institutionalization of patient engagement and ... · institutionalization of patient engagement...

Institutionalization of Patient Engagement and Consultation within the Structures and Systems of the Department of Health

Grace Marie V. Ku, MD, MPH, FPAFP, PhD1, 2, 3

Godofreda V. Dalmacion, MD, MSc, MHPEd, FPOGS2

Emmanuel Baja, MS, ScD2, 3

1Faculty of Medicine & Pharmacy, Vrije Universiteit Brussels, Belgium 2Department of Clinical Epidemiology, College of Medicine, University of the Philippines Manila 3Institute of Clinical Epidemiology, National Institutes of Health, University of the Philippines Manila Correspondence to: GMVKu at [email protected]; +639153615683

Ku, Dalmacion, Baja. Institutionalization of Patient Engagement 2

Table of Contents

LIST OF ABBREVIATIONS 4

EXECUTIVE SUMMARY 5

CHAPTER I: INTRODUCTION 7

GENERAL OBJECTIVE OF THE STUDY 8 DESIGN 8 METHODOLOGY 8

CHAPTER II: CONCEPTUAL FRAMEWORK 9

THE PATIENT ENGAGEMENT MODEL 9 SELF-EFFICACY, SELF-MOTIVATION AND SELF-CARE 10 THE MAJOR ROLES IN PATIENT ENGAGEMENT 11

CHAPTER III: METHODOLOGY 13

REVIEW OF LITERATURE ON PATIENT ENGAGEMENT IN OTHER COUNTRIES 13 KEY INFORMANT INTERVIEWS AND FOCUS GROUP DISCUSSIONS 14 NON-PARTICIPATORY OBSERVATION 15

CHAPTER IV: RESULTS 16

REVIEW OF LITERATURE 16 INTERVIEWS WITH THE DEPARTMENT OF HEALTH KEY PERSONNEL 35 CURRENT PRACTICES IN PATIENT ENGAGEMENT 35 CURRENT INITIATIVES TO INSTITUTIONALIZE PATIENT ENGAGEMENT 36 LIMITATIONS OF PATIENT ENGAGEMENT PRACTICES 36 PERCEPTIONS ON PATIENTS’ INVOLVEMENT 36 POTENTIALS FOR PATIENT ENGAGEMENT 37 PATIENT INTERVIEWS 39 DEMOGRAPHICS 39 FOCUS GROUP DISCUSSIONS 39 INDIVIDUAL PATIENT INTERVIEWS 41 RECOMMENDATIONS FROM PATIENTS’ GROUPS / PATIENTS 43 NON-PARTICIPATORY OBSERVATION 44 A PATIENT GROUP IN ACTION 44 A DEPARTMENT OF HEALTH – RETAINED HOSPITAL 44 LOCAL GOVERNMENT UNITS 45

CHAPTER V: DISCUSSION 46

THE CONTINUUM 48 CONSULTATION, ACTIVATION AND AROUSAL 49 INVOLVEMENT AND ADHERENCE 51 SHARED LEADERSHIP AND THE EUDAIMONIC PROJECT PHASE 52


PROPOSED ACTIVITIES IN THE DIFFERENT LEVELS OF THE ENGAGEMENT CONTINUUM TO PROMOTE AND SUSTAIN PATIENT ENGAGEMENT 53 LEVEL 0: INITIATION OF ENGAGEMENT PRIOR TO DIRECT CARE / INDIVIDUAL LEVEL 53 LEVEL 1: DIRECT PATIENT CARE / INDIVIDUAL LEVEL 56 LEVEL 2: ORGANIZATIONAL DESIGN AND GOVERNANCE LEVEL 57 LEVEL 3: POLICY-MAKING LEVEL 57

MONITORING AND EVALUATION 59

OUTPUT AND OUTCOME MEASURES 59 IMPACT ON UNIVERSAL ACCESS 59

QUO VADIS, DOH? 62

THE “PATIENT AFFAIRS UNIT” 62 VISION AND MISSIONS 62 FUNCTIONS 62 STAFF COMPLEMENT 63 A ROADMAP FOR OPERATIONALIZATION 65

CHAPTER VI: CONCLUSIONS & WAYS FORWARD 69

REFERENCES 71


LIST OF ABBREVIATIONS

BHFS Bureau of Health Facilities and Services

BHW Barangay Health Worker CSO Civil Society Organizations DAOP Diabetes Association of Pateros DOH Department of Health DPCB Disease Prevention and Control

Bureau FGD Focus Group Discussion HFDB Health Facility Development Bureau HHRDB Health Human Resources

Development Bureau HTA Health Technology Assessment IDI In-depth Interview KII Key Informant Interview LGU Local Government Unit MeTA Medicines Transparency Alliance NCPAM National Center for Pharmaceutical

Access and Management RHU Rural Health Unit UHC Universal Health Coverage


EXECUTIVE SUMMARY

Introduction Patient engagement has come to be considered the cornerstone of the health

care system revolution for its potential impact on health outcomes and on

reducing health care costs. Moves towards full patient engagement -

promoting and supporting active patient and public involvement in health

and healthcare to strengthen their influence on healthcare decisions, at both

the individual and collective levels – have been evident in most high-income

and some middle-income countries. In the Philippines, the call for patient

engagement in health and healthcare has become louder.

This study was conducted to devise strategies in institutionalizing

mechanisms within the DOH in order to mainstream patient engagement

and consultation in the public health sector. In order to do so, an attempt to

establish the current state of affairs of patient engagement in health and

health care in the Philippines was made and examples of successful

implementations of patient engagement in other countries were reviewed,

taking into consideration lessons learned, possible behavior change theories

that could be applied, and adapting these to the context of the Philippines.

Methodology This was a predominantly qualitative study that involved review of related

literature and pertinent documents and records; interviews with

patients/patients’ groups and key personnel at the Philippine Department of

Health; and non-participatory observation of a patient group in action, a

healthcare facility, and two local government units.

Results and Discussion

Patient engagement at the individual level involves a series of phases that

educates, arouses and activates patients to become capable of being involved

in their healthcare and make informed decisions about their health. The

same phases are evident for patients to become involved in a collective

manner and ultimately become partners with health organization

administrators and policy-makers in health and healthcare issues. In the

Philippines, there are no formal or structured patient engagement programs

in the public health sector. Patient education initiatives depend on local

government units and undertakings of the national government related to


patients and patients’ groups are mostly informative. Aside from sporadic

occurrences in the grassroots level, there are limited formal mechanisms by

which patients are involved and participate in decision-making, and there are

no regulatory mechanisms by which to enforce such.

The authors identify phases and levels of patient engagement, adapted from

patient engagement models of Barello and Graffigna (2015) and Carman et

al. (2013) and, applying current practices in other countries and adapting

these to the context of the Philippines, propose a roadmap for

operationalization to institutionalize patient and family engagement within

the structures and systems of the Department of Health. The roadmap

consists of seven strategies, namely: (1) education, empowerment and

enablement of patients and their families to be engaged in healthcare; (2)

preparation of direct care providers and health facility administrators for

patient engagement in healthcare; (3) creation of the First Line Care Team;

(4) monitoring and evaluation (including transparency and accountability);

(5) legislation and regulation; (6) partnership in health facility governance;

and (7) partnership in public policy (including research/production of

evidence for policy and HTA).

A separate unit in the DOH dedicated to patients’ affairs is recommended.

The mandate, functions and minimum staffing with corresponding basic

duties and responsibilities for this Patient Affairs Unit were identified.

While the DOH prepares for the official requisites towards the creation of

this unit, the Disease Prevention and Control Bureau may be designated to

initiate implementation of the first four strategies above, in coordination

with the Health Human Resources Bureau, the Bureau of Health Facilities

and Services and the Health Facilities Development Bureau, and in

collaboration with Local Government Units.

The DOH should introduce regulatory changes to institutionalize patient

engagement. Legislative changes have to be advocated by patients and

patients’ groups, together with their supporters such as the Medicines

Transparency Alliance.

Once the Patient Affairs Unit has been established with a full complement of

specific staff members, the seven strategies can be fully implemented.


CHAPTER I

INTRODUCTION

Universal access to health and universal health coverage (UHC) imply that

all people and communities have access, without any kind of discrimination,

to comprehensive, appropriate and timely, quality health services based on

health as a fundamental human right. To achieve the goals set forth in UHC,

a multi-sectoral approach to address the social determinants of health and

promoting a society-wide commitment to foster health and well being is

required. Patient engagement is an indispensable ingredient in health service

delivery. Engagement means actively soliciting the experiences and values

these stakeholders bring to the table, and involving them throughout the

process. Patients, being the center of all health-related interventions, should

be rightfully at the center of the discussions. Unfortunately, the very

important patient perspective is often presented by researchers, policy

makers, disease-based organizations, and healthcare professionals, rather

than by the patients themselves.

In 2014, the Medicines Transparency Alliance (MeTA) Philippines, in

collaboration with the World Health Organization (WHO), commissioned a

research study entitled “Stakeholder Mapping and Development of a Framework for

the Engagement and Empowerment of Patient Organizations in the Philippines”. In the

study, there were 59 duly “licensed” patient organizations that were mapped

out which have varying mandates, structures, objectives and levels of

capacity. Gaps were identified in the areas of advocacy, communication and

information sharing, and provision of patient support and other services. In

spite of the encouraging number of patient organizations in the country,

there was no consolidated or umbrella organization that engages with the

Department of Health (DOH) and other stakeholders. Individual groups

consult or lobby on an ad hoc basis, oftentimes on specific disease-related

issues. Only a few relatively more organized groups supported by medical

societies or healthcare professionals are able to discuss their concerns with

other stakeholders, but the voice of the majority in this sector is largely

unheard. Although patient-centered care and patient safety is a national

priority and a core agenda of the DOH, there is no formal or institutional

mechanism within the current DOH structure to engage, consult and

collaborate with patients and patients’ organizations. To date, no organized


patient group, no agency inside the Department of Health or the Local

Government health facilities is directly connected with formally

incorporating patient engagement in the delivery of health care. Evidently

MeTA has identified the Department of Health to push forward patient

engagement by commissioning this study, which aims for the

institutionalization of Patient Engagement within the structures of the

Department of Health.

GENERAL OBJECTIVE OF THE STUDY This research was conducted to formulate institutional mechanisms within

the DOH in order to mainstream patient engagement and consultation in

the public health sector.

DESIGN Qualitative methods including focus group discussions, in-depth interviews

and key informant interviews; review of related literature, legislation and

documents; and observation of structures and activities considered as critical

to patient engagement were done.

METHODS Publications regarding examples/cases of effective patients’ engagement in

the public health sector as seen in other countries were reviewed; the current

practice within the DOH in sourcing patients’ insights and

recommendations, and integrating them in national policies and programs

were documented; patients experiences and opinions on patient engagement

up to the level of incorporation of their insights and recommendations in

DOH policies and activities were collected; and steps to formalize a regular

consultation process and a system to engage patient organizations in the

planning, execution and monitoring of key health policies and programs

were devised, identifying human, technical and other resources necessary to

support implementation of the proposed framework.


CHAPTER II

CONCEPTUAL FRAMEWORK

THE PATIENT ENGAGEMENT MODEL

Barello and Graffigna (2015) define patient engagement as a processual

multi-level experience that results from conjoint cognitive (think), emotional

(feel) and conative (act) orientation of individuals towards their health

management. They also proposed a patient health engagement model to

illustrate the process of patient engagement (Figure 1).

Figure 1. The Patient Health Engagement Model. (Barello & Graffigna 2015)

In the “blackout” phase, patients fall into an initial state of emotional,

behavioral and cognitive blackout determined by a critical event that appears

unexpected and out of their control. It is deemed that the patient would be

in a “pre-contemplative” state and may be fully dependent on a paternalistic

model of medical care. In the subsequent phase of “arousal,” patients are

hyper-attentive for all symptoms their bodies produce. The patient may

enter the early contemplative stages wherein perceptions of self-efficacy

(Bandura 1977) in caring for the self may already be felt. Self-care may be

fully realized in the next phase as the patient adopts engagement. The

“adhesion” phase comes when patients have enough knowledge and

behavioral skills to effectively adhere to medical prescriptions and feel

sufficiently confident in their own emotional strength to cope with their

health condition. At this point, the patient may already be empowered

enough to veer away from the paternalistic model of medical care and move

“I am an ill body”


towards a collaborative model. Finally, the “eudaimonic project” phase

features patients that have fully come to terms with their health condition

and have accepted that the “patient” self is only one of their possible selves.

They are also able to recognize the internal resources needed to project

satisfactory life trajectories for their future. This final phase is also referred

to as the “full health engagement status” where, following the self-

determination theory (Ryan & Deci 2008), sustainable (autonomous)

motivation to adopt and adhere to self-care behavior has been stimulated

and developed.

Patient engagement – particularly of people with chronic conditions – has

come to be considered the cornerstone of the health care system revolution

for its potential impact on health outcomes and on reducing health care

costs (Barello et al. 2014). Involvement of the patient in caring for

him/herself entails more than promoting simple compliance to prescribed

medications and mere adherence to the therapeutic regimen (Delamater

2006). A collaborative approach (Wagner 1998) that takes into consideration

not only the biomedical aspects of the disease or the condition but also the

psychosocial aspects of the patient as a person may elicit better participation

of the person to be engaged for better (self-)care.

SELF-EFFICACY, SELF-MOTIVATION AND SELF-CARE

Corollary to Barello and Graffigna’s Patient Engagement Model and the

behavior change theories related to the different phases of patient

engagement, a local study on people with diabetes in Luzon (Ku & Kegels

2014a) demonstrated that the degree of self-efficacy and self-motivation that

the person possesses in order to be aroused and to adhere to health

engagement may depend on the types of attitudes, perceptions and beliefs,

and the level of knowledge and skills the person has. These internal factors

may be affected by the attitudes of and the information, education, skills

training, and other forms of support that come from the environment –

from the healthcare provider, the health service, and the community.

Whether these environmental factors are considered as motivators or de-

motivators will depend on the person. (Figure 2).


Figure 2. Internal and external influences that may affect self-care (from Ku & Kegels 2014a)

THE MAJOR ROLES IN PATIENT ENGAGEMENT

There are three groups that have major roles in patient engagement: the

engagee, the engagers, and the influencers.

In patient engagement in health, patients are logically thought of as the

engagees. It should be noted that patients, as engagees, are rational actors but

individual behavior can be affected by social, contextual and environmental

influences. Thus, for a person to be engaged, changes must be put in effect

at the individual, interpersonal and community levels. Engagement should

thus occur at the levels of (1) direct patient care, (2) the health care

organization / health system, and (3) policy-making. Consequently, engagers

should include the health care providers in the patient-doctor relationship,

and representatives from the health care organization, the health system, the

community, and the society. Fully engaged patients can also become

engagers themselves.

At the “direct patient care” level, engagement occurs focusing on the


individual. The patient is (a)“activated”; (b) assisted in setting goals for

health and self-care; (c) advised and supported for the “in-between”

moments when the person has to decide for any issues concerning the

condition without the immediate aid of a professional health care provider;

and (d) that arrangements have been made for follow-up, for consultations

with other health care professionals as needed, and referring the patient to

(support) groups (Ku & Kegels 2015). This individual focus becomes

collective in the other two levels. At the “health care organization/health

system level”, the patient would be involved in the organizational design and

governance of the health service or health system. At the community and

societal levels, the patient would be involved in policy-making. Carman et

al. (2013) illustrate the levels and continuum of engagement and the possible

factors that may influence engagement (Figure 3).

Figure 3. A multi-dimensional framework for patient and family engagement in health and healthcare (Carman et al. 2013)


CHAPTER III

METHODOLOGY

This was a predominantly qualitative study comprised of literature review,

qualitative interviews and, to a much lesser extent, non-participatory

observation. Scientific publications regarding experiences of other countries

on patient engagement were retrieved; interviews regarding patient

engagement among patients/patients’ groups in the Philippines and

officials/staff of the Philippine Department of Health were conducted; and

a patient group in action, a DOH-retained hospital and a municipality were

observed.

REVIEW OF LITERATURE ON PATIENT ENGAGEMENT

IN OTHER COUNTRIES

A scoping review of literature on the experiences of other countries

concerning patient engagement in the public health sector was done.

Attempts to retrieve information on the following were made: (1)

mechanisms by which a Principal Engager may support and promote

engagement at the community/societal level, the interpersonal level and at

the individual patient’s level; (2) the interactions between and within all

engagers, influencers and the engagee; (3) the processes of

implementation/operationalization; (4) the results of

implementation/operationalization; and (5) contributions of the engaged

patient either as an individual or as an organized group towards the

development of sound health policies and programs. At the

community/societal level and the health system/health service level,

healthcare providers, healthcare financiers, and support groups were deemed

as the engagers and influencers. At the interpersonal level, the healthcare

provider was considered as both an engager and an influencer, and family

and friends as influencers. Organizations with commercial interests in the

provision of health care and services are deemed as potential influencers.

Strategies delineated in the literature retrieved that could be applied in or

adapted to the context of the Philippines were noted.

Search for scientific publications were conducted using the PubMed database.

Keywords that were used were “patient engagement” and “health policies” OR

“patient participation” and “health policies”. Only publications published within


the past 10 years and written in the English language or with English

translation available were considered. Article sifting was done systematically.

Retrieved scientific publications were initially screened through the titles.

Abstracts of the chosen articles were retrieved and individually reviewed.

Full articles of the sifted abstracts were scrutinized and selected; only articles

that are relevant to this study’s objectives were included in the final

selection.

Philippine Department of Health documents (administrative orders,

programs, policies, etc.), which may refer to patient engagement, were also

reviewed. Information that were retrieved included: the types of AOs,

programs, activities and policies that were formulated / developed where

patients’ insights and recommendations were used; the specific patients’

insights and recommendations that were referred to; the degree to which

these insights and recommendations were used; and operationalization /

implementation and results if any.

KEY INFORMANT INTERVIEWS AND FOCUS GROUP

DISCUSSIONS

DOH officials/staff were interviewed regarding the extent of patient

involvement in the planning, execution and monitoring of key health

policies and programs and the strategies being utilized in gathering patients’

insights and recommendations. General open-ended questions on what

insights and recommendations from patients were considered in the

planning, execution and monitoring of key health policies and programs; the

degree to which these contributions were incorporated in the document; and

how these were collected were asked; questions specific to the

Bureau/Office were also asked.

Patients, either as individuals or as representatives of patients’ groups were

interviewed regarding their experiences of any involvement in the planning,

execution and monitoring of key health policies and programs. The

respondents were recruited from a list of patients’ groups in the Philippines

(MeTA 2014) and from snowballing. Individual patients (not belonging to

any patients’ groups in general) from sites in and outside Metro Manila were

likewise interviewed. Representation of as many (chronic)

diseases/conditions, of both sexes, of the different socio-economic strata,


etc. were sought. Additional criteria were: age of majority and willingness to

be interviewed.

The DOH interviews and patient FGDs were recorded in two separate

voice recorders and were later transcribed and translated to the English

language.

Proceedings of the individual patient interviews were noted by hand.

Thematic analyses of the qualitative data gathered from the KII/FGD were

done manually. Data from the DOH respondents were analyzed separately

from the data from the patient respondents.

Results of the analysis of the patients’ interviews were presented to the

patients / patients organization for feedback.

NON-PARTICIPATORY OBSERVATION

Activities of a local municipality-based patient organization (Diabetes

Association of Pateros), patient-engagement related activities and policies in

a DOH-retained provincial hospital (Bataan General Hospital) and any

undertakings that may influence or affect patient engagement in the City of

Balanga, Bataan and the municipality of Bangued, Abra were observed and

noted. Although this portion of the study was not in the protocol, it was

deemed that information gleaned might be useful and enrich the results

further.


CHAPTER IV

RESULTS

REVIEW OF LITERATURE A total of 377 titles were retrieved from PubMed; of which 25 full articles

were reviewed. The process of systematically sifting retrieved articles is

illustrated in Figure 4.

Figure 4. Systematic sifting of articles reviewed.

Of the 25 articles that were reviewed, three were on shared decision making

either in the individual or the collective level; six were on organizational

design and governance in either facility- or community-based health

services; four on policy level; seven on research, guidelines development and

health technology assessment; and the remaining five covering two or more

of the aforementioned topics. Tables 1-5 summarize pertinent information

taken from the reviewed full articles.

Table 1. Shared Decision-making (Individual and Collective) 1. Changing the policy landscape: haemophilia patient involvement in healthcare decision-

making Author Brian O’Mahony, Alastair Kent, Segolene Ayme Year of publication 2014 Type of study Meta-analysis; narrative Location of study European Union Type/Level of engagement studied Knowledge management; individual patient,

policy Interactions between and within all stakeholders (engagers, influencers, engagee) and processes of implementation / operationalization

Collaboration, networking


Results of implementation / operationalization

n/a

Problem(s) encountered / Limitations of the Study

n/a

Contributions of the engaged patient toward the development of sound health policies and programs

n/a

Plausible strategy (ies) for application / adaptation

All rare diseases face common challenges, so knowledge and expertise must be shared to improve the lives of affected patients [across the EU]. Collaboration can help to ensure that knowledge can be shared and resources combined as efficiently as possible, in order to tackle rare diseases effectively. Networking, registries and strong patient organisations are key success factors to achieving the goals of bridging the gap in provision of care and resources within each country.

2. Patient participation in collective healthcare decision making- the Dutch model Author van de Bovenkamp, Trappenburg and Grit

Year of publication 2009 Type of study Qualitative Location of study Netherlands Type/Level of engagement studied Not discussed in the article. Interactions between and within all stakeholders (engagers, influencers, engagee) and processes of implementation / operationalization

Patient organizations are often asked to represent the interests of patients in formal decision-making (neo-corporatist model). Researchers asked actors who have had experiences with patient participation in decision-making processes.


Issues identified: (1) there are too many opportunities for participation and many patient organizations simply cannot cope with the demand, (2) Patient organizations have difficulty in contributing their perspective and have little bargaining power to support their position/experiential knowledge, (3) Professional employees and professional volunteers have different knowledge that could colour their input and that brings the issue of representativeness to the fore. The experiential knowledge patients were originally asked to contribute could paradoxically disappear in the background this way.



Not discussed in the article.


One characteristic of neo-corporatism is that actors need to be recognized by the government to become part of the formal decision-making structure. Government therefore decides who is in and who is out. On the other end, when patient organizations focus on their professionalization


too much, they move away from the people they represent, which negatively affects their democratic potential. It is important to investigate further which subjects lend themselves to patient participation and which ones do not. The idea that patients should become an equal third party in every decision-making process concerning health care is not feasible in practice nor is it desirable when we look at the effects described. Forms of participation that rely on individual patients, such as focus groups, shadowing and training by patients, which have the advantage that they demand less of participants and are able to stay close to patient experiences, should also be considered.

3. An overview of patient involvement in healthcare decision-making: a situational analysis Author Chirk-Jenn Ng, Ping-Yein Lee, Yew-Kong Lee,

Boon-How Chew, Julia P Engkasan, Zarina-Ismail Irmi, Nik-Sherina Hanafi1 and Seng-Fah Tong

Year of publication 2013 Type of study Comprehensive literature review Location of study Malaysia Type/Level of engagement studied Direct patient care Interactions between and within all stakeholders (engagers, influencers, engagee) and processes of implementation / operationalization



n/a


n/a


Incorporating teaching of SDM into undergraduate curriculum Incorporating a more structured SDM teaching into postgraduate curriculumP Incorporating SDM training into continuing professional development, including workshops on SDM and how to use patient decision aids Incorporating SDM in clinical practice guidelines Advocate the use of patient decision aids or other decision support tools in patient care Patient involvement in decision making as a quality indicator Payment/reimbursement for practices which implement SDM or use decision aids Baseline research on patient involvement in decision making at the national level Exploratory studies on the factors influencing decision making in a multi-cultural and multi-lingual context Developing and evaluating decision support interventions to help patients make informed decisions



Develop and evaluate interventions to incorporate SDM in routine care Malaysian Medical Council should consider developing a national healthcare policy on SDM The Ministry of Health should improve on the existing patient health information system to make the content more accurate, user-friendly and accessible to the public Public health campaigns should target at empowering people to be more involved in their health care and making decisions about their health care

Table 2. Organizational design and governance of facility-based and community based health services

1. User engagement in the delivery and design of maternity services Author Nashita Patel, Daghni Rajasingam Year of publication 2013 Type of study Narrative Location of study UK (NHS) Type/Level of engagement studied Services in health facilities Interactions between and within all stakeholders (engagers, influencers, engagee) and processes of implementation / operationalization

Empowering women through use of advocacy services; ‘Life course’, women centered approach to empowering women


n/a


n/a


Empowering these groups of women from ethnic minorities by the use of advocacy services may reduce some of the variation in the quality of care provided to them


Established methods of user engagement have to be modified and culturally sensitive if service providers are to engage in a meaningful way with these groups of women. Innovative methods are required to re-educate doctors to enable shared-decision making. P

2. Involving users in service planning: A focus group approach Author Kelly A, Caldwell B, & Henshaw B

Year of publication 2006 Type of study Qualitative participatory research Location of study UK Type/Level of engagement studied Services in health facilities Interactions between and within all stakeholders (engagers, influencers, engagee) and processes of implementation / operationalization

Involvement of service users in the possible reconfiguration of follow-up services for breast cancer patients at a North London hospital; focus group approach


Patients identified their needs such as the need for reassurance after the diagnosis of cancer, continuity of care, privacy and dignity and other elements of the Pexamination technique,


information and the detection of new symptoms, the opportunity to discuss feelings and worries


Purely qualitative


The qualitative approach provided the platform for the patients to tell their stories and provide valuable information about local services. The use of the focus group provided a valuable opportunity to explore also the thoughts and feelings of respondents in relation to breast care services in more depth than would have been feasible either in a questionnaire survey or through personal interviews.


The focus group approach was an effective means of ascertaining the experiences and needs of service users.

3. Patient-and-public-involvement-models-and-muddles Author Forbat, Hubbard & Kearney Year of publication 2009 Type of study Qualitative Location of study UK Type/Level of engagement studied Services in health facilities Interactions between and within all stakeholders (engagers, influencers, engagee) and processes of implementation / operationalization

Identified four models of engagement 1) Patient as consumer 2) Patient as citizen 3) Patient/ partner as partner 4) Patient as researcher Used method called Enabling Change collaborative work, where staff and people affected by cancer worked together to make changes to the service based on patient experiences and centralising patient involvement


Identified patient involvement concepts from perspective of service providers (some of which are worrisome according to the authors):

(1) Involvement is ‘patient satisfaction’, (2) Involvement is ‘day-to-day practice’, (3) Involvement is ‘making a difference to other’s care’, (4) Involvement is ‘getting a message across’

The range of ways of conceptualising involvement are used interchangeably within policy and practice without due recognition of the very different meanings and implications of public consultation, no evidence yet that health service providers are moving beyond the equation: involvement equals consultation.


See above




One of the greatest barriers to truly integrating patient involvement into the health service, policy and research is the conceptual muddle with which


involvement is articulated, understood and actioned. There is a need for an urgent focus to underline the value in patients’ experiences informing services and research.

4. Patient empowerment as a component of health system reforms: rights, benefits and vested interests

Author Colombo, Moja, Gonzalez-Lorenzo, Liberati, Mosconi

Year of publication 2012 Type of study Narrative Location of study Italy Type/Level of engagement studied Not discussed in the article. Interactions between and within all stakeholders (engagers, influencers, engagee) and processes of implementation / operationalization





A paternalistic approach in health care still prevails in many countries, by professionals and patients. This is the first cultural obstacle to citizens’ and patients’ involvement, as health care operators often do not recognize patients and citizens as equal partners.


Involving consumers in the development of information material for patients increases its relevance, reliability and understandability. Training programs targeted at citizens, patients and health professionals are needed in order to improve: (1) patients’ skills, in making informed decisions; (2) patients’ participation on advisory boards or in multidisciplinary working groups; and (3) health professionals’ skills in informing their patients and promoting shared decision-making. Full access to complete and reliable information is the key issue to allow and increase citizens’ and patients’ participation in health care decisions. A cultural change is still needed to spread these initiatives, to shift from expert- based medicine to shared decision-making. Improving citizens’ and patients’ health literacy is a fundamental condition to attain valuable benefits.


5. A Model for Using Community-Based Participatory Research to Address the Diabetes Epidemic in East Harlem

Author Horowitz, Goldfinger, Pulichino, Arniella, & Lancaster

Year of publication 2008 Type of study Participatory research Location of study USA Type/Level of engagement studied Community-based health services Interactions between and within all stakeholders (engagers, influencers, engagee) and processes of implementation / operationalization

Community engagement between clinicians, outreach workers, community leaders and researchers A conceptual model to describe the relationship


between individuals’ environments, medical care, and beliefs and behaviors, and how all of these elements affect nutrition, physical activity, and health outcomes including obesity and diabetes was created. A pilot of the HEAL (Healthy Eating, Active Lifestyles) program revealed that participants lost weight and maintained a 5% mean weight loss at 1 year follow-up.


Building trust through community outreach, and events. Then the coalition began to involve community members in research.




This model can be applied to other communities with low-income and low-literacy minority populations. Plausible strategy (ies) for application /

adaptation 6. ‘Pizza, patients and points of view’: Involving young people in the design of a post

registration module entitled the adolescent with cancer Author Fallon, Smith, Morgan, Stoner, Austin Year of publication 2008 Type of study Pilot exploratory study to develop “adolescents

with cancer” module Location of study UK Type/Level of engagement studied Not discussed in the article. Interactions between and within all stakeholders (engagers, influencers, engagee) and processes of implementation / operationalization

Teenagers and young people with cancer from a major UK regional cancer centre were contacted by post and invited to attend a ‘Pizza, Patients and Points of View’ evening


The ‘post-it ideas storm’, and ‘diamond ranking’ identified and ranked the knowledge and qualities the participants felt adolescent cancer nurses should have.


Involving users when they are young people can provoke anxiety including; the power balance between the facilitator and the young person might be seen as unequal or threatening, both facilitator and young person may feel vulnerable and the facilitator may feel unsure they have adequately developed communication skills necessary to engage young people in a meaningful way.


There are benefits for both healthcare professionals and service users and carers to work in partnership in relation to healthcare delivery and service planning: ensuring healthcare developments reflect service user and carers’ needs, reducing assumptions about user and carer’s views and needs, and improving communication between healthcare professionals and service users



Activities used to elicit were the ‘post-it ideas storm’, ‘diamond ranking’ and ‘dot voting’ (Shephard & Treseder, 2002). Utilising the ‘spice it up’ framework (Shephard and Treseder, 2002) reduced the facilitators’ anxieties relating to engaging with young people in a meaningful way.

Table 3. Policy 1. Engaging Patients in Public Policy Advocacy

Author Charlotte W. Collins and Nuala S. Moore Year of publication 2014 Type of study Meta-analysis; narrative Location of study USA Type/Level of engagement studied Direct patient care; patient and community Interactions between and within all stakeholders (engagers, influencers, engagee) and processes of implementation / operationalization

Engagement can be as simple as listening to patient stories about their conditions, struggles, and care, and respectfully asking them to repeat these stories to those who can make a difference. Ask them about the quality of their lives, including how the cost of care impacts them and their ability to work, socialize, and pay for other living expenses. P Invite patients to meetings and invite them to set up meetings for both groups. P Nominate a motivated patient to serve as a patient consumer representative on government regulatory panels, suchPas the FDA’s advisory committees.


n/a


n/a


Suggests that the patient plus the health care professional, along with a government-relations professional, are the “golden triad” of public policy change. Patients can convey authentic passion from their own stories about how a policy directly affects them or their community, a policy maker may define the parameters of a proposal byP a cost-benefit analysis or the ease of implementation. The government-relations professional completes the golden triad by adding insight into the policy-making process and by identifying potential tactics and barriers.


2. Facts and figures about patient associations in the Netherlands between 2007 and 2009 Author Kamphuisa, Hekkerta, van Dongenb, Kool Year of publication 2012 Type of study Analysis of secondary data Location of study Netherlands Type/Level of engagement studied Policy Interactions between and within all stakeholders (engagers, influencers, engagee) and processes of implementation / operationalization










Patient associations reduce information asymmetry by informing patients through several platforms such as social media.

3. Are the assumptions underlying patients choice realistic?: a review of the evidence Author Greener Year of publication 2007 Type of study Thematic review Location of study UK Type/Level of engagement studied Not discussed in the article. Interactions between and within all stakeholders (engagers, influencers, engagee) and processes of implementation / operationalization

Patient collaborating with physician re: when, where, what kind of treatment will be given


n/a


n/a


Policies to increase patient choice require a significant investment in terms of restructuring primary-care services to allow them to happen, as well as to present relevant information to patients, but that patients may not want to make choices about where and what type of treatment they receive for the most part, being content with having a larger say in when they are treated. For us to be able to move toward a ‘co-production’ of care model in which patient choice is a central part, a change is required in which patients will lead the process of making care decisions. Factors that are grouped under the heading ‘social capital’—educational attainment level, social background, location of residence and professional status—may also affect whether a particular patient will feel comfortable making choices or not. Instead of assuming that simply providing more information for patients will allow them to make choices, we must instead think about choice in a more coherent way—we must understand how patients might make care decisions and consider how we can better prevent evidence for them that includes significant clinical and non-clinical factors. We must also allow patients not to make choices where they wish—it makes little sense to force a patient into choosing on a fairly arbitrary basis when an experienced and knowledgeable doctor can assist them. Finally, we must recognize that choice processes for health do not operate in the same way as they do in other services—they occur in a social setting where the support of family and friends is



crucial, and so, as a result, narrowing them to an individualistic process which does not take account these factors ignores the importance of individual support networks that are so crucial in welfare.

4. Tensions in public health policy: patient engagement, evidence-based public health and health inequalities

Author R Thomson, M Murtagh, F-M Khaw Year of publication 2005 Type of study Modeling Location of study UK Type/Level of engagement studied Not discussed in the article. Interactions between and within all stakeholders (engagers, influencers, engagee) and processes of implementation / operationalization

Modeling of outcomes of shared decision making VS evidence-based guidelines for hypertension treatment


If only 50% (or 25%) of eligible patients agreed to treatment as a result of shared decision making, then 122 (or 183) strokes would occur that would otherwise have been prevented. In a typical UK general practice with 10 000 patients, this would represent an extra 12 (or 18) strokes over 5 years.


Modeling only


Engaging patients in treatment choices might therefore lead to fewer patients taking treatment, an increased incidence of stroke, and failure of health services to achieve targets for blood pressure control and disease reduction. Nonetheless, patients would have experienced greater involvement in decision making, less decisional conflict, greater satisfaction with their decision and, in those who decide to take treatment, potentially better levels of concordance and blood pressure control.


There is a need to quantify the effects of patient engagement in treatment decisions and model the impact of these decisions on population health. There is also need for research that supports engagement that does not increase inequalities.

Table 4. Patient engagement in research, guidelines development and health technology assessment

1. Patient engagement in research: a systematic review Author Domecq, Prutsky, Elraiyah, Wang, Mohammed

Nabhan, Shippee, Brito, Boehmer, Hasan, Firwana, Erwin, Eton, Sloan, Montori, Asi, Dabrh and Murad

Year of publication 2014 Type of study Systematic literature review Location of study Not discussed in the article. Type/Level of engagement studied Not discussed in the article. Interactions between and within all stakeholders (engagers, influencers, engagee) and processes of



implementation / operationalization Results of implementation / operationalization

Some issues identified: patient engagement may become tokenistic (a false appearance of inclusiveness), resulting in a devaluated patients’ input. Another potential challenge described was “scope creep”; a theoretical concern that engaging patients in the research may include irrelevant community concerns and issues, which would make the research unfeasible.




Engaging patients in research improves patient enrollment and decrease attrition.


Engaging patients in all research phases (preparatory, execution and translation) seems feasible in most cases. Patient engagement in healthcare research is likely feasible in many settings. However, this engagement comes at a cost and can become tokenistic. Research dedicated to identifying the best methods to achieve engagement is lacking and clearly needed.

2. Why we need community engagement in medical research Author Jessica K. Holzer, PhD1, Lauren Ellis, MA2, and

Maria W. Merritt, PhD Year of publication 2014 Type of study Participatory research Location of study California, North Carolina, Colorado

Type/Level of engagement studied Community engagement Interactions between and within all stakeholders (engagers, influencers, engagee) and processes of implementation / operationalization

Employed locally appropriate trust-building activities such as hiring community members, working with community leaders and community-based organizations, considering the research participants’ practical needs, inquiring about factors affecting recruitment and retention, incorporating cultural practices into research protocols, and sharing results with community members Encouraging participation and promoting uptake of findings


Gains in recruitment and retention of African-American research participants


Mistrust in research; Mistrust in health care system


Value of engaging the community to medical research


Applicable to all contexts, provided that researchers maintain context-specific situational awareness

3. The role of patient advocacy organisations in neuromuscular disease R&D Author Boon, BroekgaardenP Year of publication 2009 Type of study Not discussed in the article.


Location of study Netherlands Type/Level of engagement studied Not discussed in the article. Interactions between and within all stakeholders (engagers, influencers, engagee) and processes of implementation / operationalization



How the Dutch neuromuscular disease organisation (Vereniging Spierziekten Nederland, or VSN) communicated their needs in relation to biomedical innovations: (1) Management of expectations - aligning with scientific advisors and internalising the ability to assess scientific knowledge. Here it continuously kept track of scientific developments, annotated them, tried to clarify them, and reported about them using dis- claimers. They always left the choice to patients, and if they wanted to adopt a new therapy, they encouraged measurement of safety and efficacy data. (2) Active Case Building - VSN started to put issues on the policy agenda, such as the reimbursement of expensive drugs. They did a thorough synthesis of needs and preferences, which includes in some cases even producing full-blown consultations, reports and figures. (3) Network building - had an overview of the field and the problem at hand, and envisaged that some actors needed to be brought together in order to work on the problem. This mechanism largely concerns aligning other actors to achieve some longer-term solutions.







4. User involvement, research and health inequalities: Developing new directions Author P. Beresford Year of publication 2007 Type of study Service user involvement in research Location of study n/a Type/Level of engagement studied Patients as engagees and as engagers

Interactions between and within all stakeholders (engagers, influencers, engagee) and processes of implementation / operationalization

Researchers can include users in research, and at the same time, users can initiate the researches themselves.


n/a


n/a


n/a



Health inequalities, with its concerns with disadvantage, social justice, social inclusion and equality seem a particularly suitable area to research in a participatory way, involving service users/participants and/or supporting and encouraging them to undertake their own research.

5. An international survey of the public engagement practices of health technology assessment organizations

Author Whitty Year of publication 2013 Type of study Web-based survey Location of study Australia Type/Level of engagement studied Not discussed in the article. Interactions between and within all stakeholders (engagers, influencers, engagee) and processes of implementation / operationalization





Challenges to engagement identified by respondents included the potential tension between social and scientific considerations, and practicalities around engaging patients and dissemination of information. Timeliness featured prominently, with respondents indicating a mismatch between the demand for timely HTA and the time required to undertake high-quality public engagement. A lack of expertise for undertaking qualitative research was identified as a challenge. While a majority of Health Technology Assessment (HTA) organization surveyed (67% of 39 responders) said that they engage in some form of public engagement, approximately half the organizations in the current survey reported being responsible for making decisions or recommendations. Findings of the survey appear to be that public engagement mechanisms used by HTA organizations predominantly occur via one- way transfer of information either from the HTA organization to the public (communication) or vice versa (consultation).




Some possible research questions: � Why do some HTA organisations report that

they do not undertake public engagement activity? Is this a philosophical position, or is a lack of engagement based on pragmatic barriers?

� Why and in what circumstances do organisations choose one engagement mechanism over another?


� Do different levels of HTA organisation use different public engagement mechanisms?

� To what extent do HTA organisations synthesise the literature on patient needs and perspectives or quantify patient or public preferences to inform HTA processes and decision-making?

� What are the potential role, benefits and disadvantages of novel approaches to public engagement, such as the use of social media?

� How can we synthesise the published literature and experiences from actual examples of public engagement in the HTA setting, to provide a more complete picture of development and activity in this area?

HTA organizations should be encouraged to publish narratives of their experiences with public engagement, to support the development of systematic yet pragmatic approaches and frameworks for doing so.

6. Patient-based health technology assessment: A vision of the future Author Bridges and Jones Year of publication 2007 Type of study HTA Location of study Not discussed in the article. Type/Level of engagement studied Individual patient Interactions between and within all stakeholders (engagers, influencers, engagee) and processes of implementation / operationalization

Interaction between physician and patient mediated by HTA.






A patient-based HTA can promote the antecedents of empowerment by both informing patients about medicine and informing medicine about patients.


HTA should be constructed in a way so that it is relevant to patients, and it must be respectful of the important role that physicians play in a shared decision-making environment. A patient-based HTA must be aware and respectful of patient preferences.

7. Reconsidering Patient Participation in Guideline Development Author van de Bovenkamp, & Trappenburg Year of publication 2008 Type of study Systematic literature review Location of study Type/Level of engagement studied Involvement in practice guidelines development. Interactions between and within all stakeholders (engagers, influencers, engagee) and processes of implementation / operationalization




When patients do participate, there is uncertainty amongst participants about the goals of participation and patients have difficulty following medical jargon and assessing technical medical literature. Several authors pointed out that as a consequence the patients gave little input.




Although the general consensus seems to be that patients should be involved in guideline development, the added value of their participation has yet to be established.


Decision-making processes must be studied in different ways, for example by doing case studies, surveys, interviews and guideline analysis. A combination of methods should be used, including active participation, throughout the guideline development process. Most authors concluded that patient representatives should receive more guidance during the process. Patient participants ought to be trained, prepared and educated to fulfill their task. Attention in the guidelines for individual patient preferences can be accomplished by including a separate section or chapter on patient–physician communication.

Other conclusions Doctors and guideline development organisations did not always look forward to the idea that patients be involved in guideline development for patient care. Patients contribute most on the subject of patient education, although subsequently their contributions are not acted upon. Consumers should be involved in all stages of guideline development by using several methods at once, and supporting patients throughout the process. There is little evidence in support of the position of many authors that argue in favour of patient participation in guideline development because, supposedly, it increases the quality of the guidelines. Another difficulty that is encountered is the integration of patients’ experiential knowledge in an otherwise evidence-based guideline. Even if their involvement does not change the content of the guidelines much, it could make all parties in health care at least feel more like partners.


Table 5. Multiple classifications (research, HTA, direct patient care, organizational design & governance, policy) 1. A review of literature about involving people affected by cancer in research, policy

and planning and practice Author Hubbard, Kidd, Donaghy, McDonald, & Kearney Year of publication 2007 Type of study Literature review Location of study n/a Type/Level of engagement studied Involving people affected by cancer in healthcare

research, policy and planning and practice Interactions between and within all stakeholders (engagers, influencers, engagee) and processes of implementation / operationalization

In research, people acted as advocates, strategists, advisors, reviewers and as participatory researchers. In policy and planning, people were involved in one-off involvement exercises and in longer-term partnerships. Men, those with rare cancers, children, and people who are socially deprived have been rarely involved.


n/a


n/a


n/a


There needs to be a shift away from paternalism and a commitment made to sharing power and control. Healthcare professionals need to be encouraged to stop wanting to do things for patients, but to also want to do things with patients and their family care givers. Likewise, patients need to stop wanting things only to be done to them, but to also want to do things with healthcare professionals.

Other conclusions There is confusion around who is, and who should be, involved in research and policy and planning, and a lack of clarity of definitions when using the terms “user”, “patient”, “carer”, “public”, “consumer”, “advocate”, “stakeholder”, “survivor”. In the practice setting, it is clear that an individualised approach to involvement is required so that people affected by cancer can play an active, shared or passive role as, and, when they prefer. Thus, rather than advocating and implementing a ‘participation’ or ‘non-participation’ strategy for all patients, healthcare professionals need to adopt a flexible approach


2. Great expectations? Reflections on the future of patient and public involvement in the NHS

Author Ellins Year of publication 2011 Type of study Narrative Location of study UK Type/Level of engagement studied Individual Interactions between and within all stakeholders (engagers, influencers, engagee) and processes of implementation / operationalization



Three key roles that patients can play in the healthcare system, all with the potential to improve the quality and outcomes of care: (1) evaluator, (2) consumer, (3) co-producer.


Patient feedback tends to be used on an ad hoc and selective basis, rather than systematically or rigorously. Local services are most likely to respond to issues raised about the care environment, the provision of information and accessibility (eg opening times and appointment systems).


Strategies to support patients have been established, although more tailored approaches that target the barriers to involvement that some groups are more likely to face are also required. Equally there needs to be a far greater focus on creating an environment conducive to patients evaluating services, making informed choices, and actively participating in their own care.

3. Theoretical directions for Pan emancipatory concept of patient and public involvement Author Gibson, Britten, & Lynch Year of publication 2012 Type of study Narrative Location of study UK Type/Level of engagement studied Individual with public partnership Interactions between and within all stakeholders (engagers, influencers, engagee) and processes of implementation / operationalization



Proposed a framework for Patient and Public Involvement:





People involved in establishing new involvement processes could use this framework to help identify the potential barriers and facilitators to the creation of any new engagement structures. The framework can also be used to map the diversity and fluidity of different patient and public involvement initiatives and groups. Effective engagement will always involve achieving at best a dynamic equilibrium between differing, sometimes contradictory points along the dimensions described in the framework (above). Professionals and lay people need to be able to participate from a position of equality, each acknowledging that there are complex questions of evidence and value in healthcare policy decisions. One of the aims of involvement may be to break down boundaries, share experience and build understanding. The government, together with its state ideological apparatuses, has to retreat and increase its trust in the citizenry of a democracy and its respect for their diverse cultures.

4. Patient and Citizen Participation in Health: The Need for Improved Ethical Support Author Laura Williamson Year of publication 2014 Type of study Meta-analysis; narrative Location of study n/a Type/Level of engagement studied Patient-centered approach, with individual patient

“making decisions for own health” Interactions between and within all stakeholders (engagers, influencers, engagee) and processes of implementation / operationalization

Contends that there must be public or community and private or individual patient engagement


n/a


Narrative only


n/a

5. What are the key ingredients for effective public involvement in health care improvement and policy decisions? A randomized trial process evaluation

Author Antoine Boivin, Pascale Lehoux, Jako Burgers,

And Richard Grol

Year of publication 2014 Type of study Randomized trial process evaluation Location of study Canada Type/Level of engagement studied All levels Interactions between and within all stakeholders (engagers, influencers, engagee) and processes of implementation / operationalization

The public members (1) attended a 1-day preparation meeting, (2) were consulted by vote on their local priorities for improvement, and (3) participated in a 2-day meeting to deliberate with professionals and reach agreement with them on local health care improvement priorities. The 2-


day meeting between public members and professionals included small-group deliberation, feedback of the public consultation results, and voting. In the control sites, the professionals among themselves prioritized quality indicators without public involvement (no participation of public members or feedback about the public consultation).


Priorities selected in intervention sites placed more emphasis on access to primary care, self-care support, patients’ participation in clinical decisions, and partnership with community organizations. Agreement between public representatives’ and professionals’ improvement priorities increased by 41% in favor of intervention sites. The intervention fostered mutual influence between patients’ and professionals’ priorities. Professionals’ choices moved toward indicators prioritized by the public (eg, access), and public representatives’ choices moved toward indicators prioritized by professionals (eg, self-care support).


Limited because of the diversity of public involvement interventions and the influence of the sociopolitical contexts in which they are implemented


The study showed how both technocratic (public credibility) and democratic process issues (their legitimacy to represent others) underlie the unfolding of a public involvement intervention and shape its impact on collective decisions. It also showed that public involvement interventions not only must give public participants enough information to understand the technical language used by professionals but also must support their ability to become a credible source of knowledge for professionals. Furthermore, it demonstrated that “giving a seat or two to patients” are unlikely to change health care and policy decisions.


Engagers need to better distinguish statistical representativeness from representation roles in discussions about public legitimacy. They must also expand their notion of public members’ competence beyond members’ understanding of technical terms in order to support the development of a contributory public expertise.

No DOH documents explicitly stating consultation with or engagement of

patients during the formulation or crafting in any policies or activities were

found in our search.


INTERVIEWS WITH THE DEPARTMENT OF

HEALTH KEY PERSONNEL

Representatives from five DOH bureaus/offices were interviewed. The

bureaus/offices were: (1) Health Policy Development & Planning Bureau;

(2) Health Facility Development Bureau; (3) Disease Prevention & Control

Bureau; (4) Human Health Resources Development Bureau; and (5)

Pharmaceutical Division. In-depth interviews of these key informants were

done. In two instances, there was more than one respondent per

bureau/office (HHRDB, HPDPB).

Contextual analysis of the interviews revealed the following findings

regarding current practices in patient engagement, current initiatives to

institutionalize patient engagement, limitations of patient engagement

practices, perceptions of the DOH on patient engagement, and potentials

for patient engagement.

Current Practices in Patient Engagement - Health Partners’ Meeting with civil society organizations (not

specifically patients’ groups) and academic institutions

- Joint Appraisal Committee and Joint Assessment and Planning

Initiatives

- Administrative documents and policies are drafted by the DOH, then

“nationwide” public consultations or dissemination forums are

conducted.

- Each bureau/office within the DOH craft its’ own policies and these

are funneled to DOH-HPDPB as a “finished product”.

- Engagement is more evident in a group of people with tuberculosis

(from the Lung Center of the Philippines) and disabled-people’s

organizations. However, programs for diseases/conditions that are

considered non-emergent are less or not prioritized.

- Advisory boards of hospitals are said to include one member from a

patients’ organizations (quality standards in hospitals)

- At present, patient engagement includes (and is somewhat limited to)

the use of patient satisfaction survey tools (patients are engaged as a

“service recipient” but not as a policy stakeholder).

- For the next cycle of budget preparation, the DOH will already be

required to include stakeholder consultation in its pre-planning


Current Initiatives to Institutionalize Patient Engagement - Adoption of the Mexico City Principle (disclosure of transparency

among pharmaceutical companies)

- AO 2007-0038 Development of Efficient National and Local Health

Systems: Engagement of stakeholders like LGU and Civil Society

Organizations (CSO).

Limitations of Patient Engagement Practices - Invited organizations to consultations and forum are not patient-

specific; rather, it is more of the CSOs who are more frequently

invited. Furthermore, whoever is invited to these

consultations/forums is at the discretion of DOH, and is usually

limited to those whose contact details are known to the Department

or are readily available.

- No concrete definition of “relevant” organizations to be invited to

the public consultations/fora

- DOH solicits “some” support from CSO in response to policies they

have created; but such consultations are mainly informative rather

than consultative

- There is no information system for patients and patient groups in the

DOH

- Some of the patients’ organizations have outdated websites and

contact numbers and thus are difficult to invite to policy

consultations

- DOH has no specific assigned office to receive patient inputs

- Patient groups are location-specific (inequity in patient

representation)

- Operations manuals for hospitals does not include consultations with

patients and patient groups

- Monitoring and evaluation of patient satisfaction survey results

beyond the facility as well as feedback to patients are vague

Perceptions on patients’ involvement - Perception that patients are too emotional, and might decide based

on emotions and “personally-related” experiences

- Perception that patients are not knowledgeable in the technical

process and technical concepts


Potentials for patient engagement - The need for patient engagement is recognized as this is required for

the next cycle of budget preparation

- Barangay Health Workers (BHWs) may play an important role as

patient engagers at the community level if they are trained to engage

and support people/patients

Interviews with representatives from the Department of Health revealed

that policies are usually crafted by the respective offices, bureaus, units and

the Health Policy Development and Planning Bureau (HPDPB) serves as a

“clearing house” for the “finished products”. The crafted policies are

introduced to the populace through nationwide “blitzes”, where members of

Civil Society Organizations, not necessarily of the patients’ groups’ variety,

are invited. When asked which specific patients’ groups have ever attended

any of these policy blitzes, the respondents replied that the most active ones

are those from the Lung Center of the Philippines and of people with

disabilities, which are based in Metro Manila. The DOH representatives

claim that it is difficult to invite patients’ groups as they do not have their

contact numbers, only a few patients’ groups have websites, and the contact

details listed in the said websites are oftentimes inaccurate. Neither does the

DOH have any office specifically for patients and patients’ groups –

whether to maintain a registry, to receive inputs, or to liaise between the

patients and the different offices of the Department, including the DOH-

related hospitals. With regard to specific processes in the crafting of policies

or program planning, the respondents replied that involvement of

patients/patients’ groups would depend on the office preparing the said

policy or program. However, patient participation in these activities are

vague; it is highly probable that they may only be included as a part of the

audience during information dissemination. The representatives, however,

are positive that involvement of and consultations with groups outside of

the DOH – civil society organizations generally and patients’ groups

specifically – will become a more common practice at the Department to

comply with the Department of Budget Management requirements. More

so, foreign aid specific for patient engagement activities will soon be

received by the DOH and thus they foresee an increased activity towards

inclusion and a more active participation of patients/patients’ groups in

DOH activities in the future.


The DOH respondents recognize the significance of involving patients in

decision-making, in both individual and collective modes. The NCPAM has

initiated efforts to actively seek consultations specifically with

patients/patients’ groups regarding policies and regulations on medicine and

pharmaceutical companies in the Philippines. The NCPAM representative

agrees that patients’ experiences and reasonable preferences on health and

healthcare should be taken into consideration in making decisions that will

affect them. However, there is some trepidation among higher-level

personnel of the Department of Health. Apparently, some higher-level

administrators believe that certain health or healthcare experiences,

especially bad ones, may trigger emotional responses that may cloud the

patients’ judgment. Additionally, they apparently perceive that patients do

not have adequate knowledge and/or skills to follow deliberations of board

or committee meetings and non-familiarity with processes will only delay

planning and formulation of policies, projects, activities, etc.

Understandably, the thrust towards patient engagement will demand for

human resources in terms of additional manpower and supplementing the

knowledge and skills of pre-existing human resources for health. The DOH

respondents, especially representatives from the HHRDB, recognize the

need to train health care workers on patient engagement. They identify the

potential of barangay health workers (BHW) in community-based activities.

Although a common problem is the probable turn-over of BHWs with

every local government elections, they believe that equipping BHWs with

the knowledge and skills to engage patients and families in health may

increase their perceived self-efficacy and the possibility that, because of this

perceived expertise on the matter, they may still be motivated to carry on

such activities even if they will no longer be holding the position.

The DOH DPCP respondent echoed the same belief that patient

engagement in health and healthcare is essential. The respondent believes

that much of the initial work on engaging patients will be community-based

and is actually complementary to their health promotion and disease

prevention activities and signified willingness in taking on the (earlier steps)

in implementing patient engagement in health and healthcare in the

Philippines, should this be effected.


Observations that prioritization of DOH projects may be whimsical was not

countered. Additionally, the observed lack of long-term monitoring and

evaluation of a number of implemented DOH programs and directives,

such as that of patients having representations in hospital boards, was

confirmed. Apparently, programs would be implemented and then left

behind, especially when top-level officials espouse new projects.

PATIENT INTERVIEWS

Demographics

Two focus group discussions were conducted among a total of 10 people

representing different patients’ groups. Separate individual interviews were

conducted in nine respondents. Majority of the respondents were patients

with chronic life-long conditions; two were parents of dependent patients

with chronic life-long conditions. Respondents came from Metro Manila

(City of Manila, Pasay City, Pateros, Caloocan City, Makati City, Quezon

City), Ilocos Norte (Batac City, Pagudpud), Bangued (Abra) and Cagayan de

Oro City. Ages ranged from 35 to 71 years. Educational attainment ranged

from college level (finished second year of college) to postgraduate (master’s

degree).

Focus Group Discussions

The following themes were identified from the focus group discussions with

patients’ groups:

Concepts.

- Patient engagement is thought of as a “fight”.

- Respondents believe patients should not be passive but rather should

be active co-participants in their care.

- It appears that the “engager” at the micro-level is the patient or a

concerned individual (immediate family, close friends).

- Patients are introduced to the patient organizations through informal

networks (health care provider, friends, fellow patients met in the

waiting area prior to clinical consultations). There are no formal

mechanisms to organize and integrate them.


Barriers to patient engagement.

- Some patients lack (essential) knowledge on their condition, on health

care needs, on health services

- Decentralization

• Local Government Units (LGUs) are focused on other

diseases and do not seem to “follow” priorities and policies set

by higher-ups

• Health programs and services are dependent on the whims of

the local/regional chief executives)

• Change in local politicians may mean a change in frontline

health workers (and therefore the training for initial health

workers are put to waste)

- Burdens are on the private partners (in ‘Public-Private Partnerships’

PPP health projects)

- “Doctors as gods” mentality, meaning, whatever doctors say, patients

should follow (classical, paternalistic model of medical care rather

than collaborative or patient/person-centered). This may come from

the doctor themselves or may be the norm among patients.

Perception of DOH-level patient engagement.

- Top-down approach (patients are consulted only in the end when

there are already policies)

- Lack of support from the national level to stimulate patient

engagement at the individual level

The FGD participants were a mixture of people who are aware of, and

people who have not yet heard of the term “patient engagement”. Focusing

on the key word “engagement”, those who were not aware likened “patient

engagement” to “rules of engagement” (defined by NATO as directives to

military forces that define the circumstances, conditions, degree, and

manner in which the use of force, or actions which might be construed as

provocative, may be applied).

All of them agreed that they should “have a say” regarding their condition

and medical care; and, with the emotional upheaval upon learning of their or

their children’s/relatives’ condition and the lack of external resources for

formal support, were stimulated to explore on the conditions on their own.

None of the patients’ organizations to which the respondents belong to


were established through formal mechanisms: most of the groups were

organized by the patients themselves, who got to know each other in

doctors’ waiting rooms, while some groups were initiated by their

(attending) physicians.

The respondents recognize that, at present, they may be more enlightened

regarding their conditions as compared to the majority of patients in the

Philippines. Recounting the state of affairs before they attained this certain

level of enlightenment, the respondents reported that, then, they felt at a

loss regarding their diagnosis in terms of what it is, what to do, what health

services are needed and where to avail of these. Such lack of knowledge

could translate to dependence on the healthcare providers for medical

decisions. The paternalistic model of care, which is still being actively

practiced especially in rural areas, aggravates this situation further.

With regard to activities in the Department of Health, representatives of the

patients’ groups recount that the DOH does not involve them in the

crafting of policies or in the planning of activities. Rather, the DOH

presents to them the “finished product” and their comments and/or

suggestions are no longer considered. Although policies and directives

towards delivery of patient-centered care exist, the respondents observe that

these are not truly implemented especially in the grassroots level. The

respondents indicated that there seem to be no specific actions of the DOH

towards fostering patient engagement.

Individual patient interviews

The following themes were identified from the individual patient interviews:

Concept - Minimal awareness of patient engagement whether as (1) active caring

for oneself or (2) patient participation in crafting policies and

programs by the government

- Minimal awareness of the possibility of actively participating in one’s

healthcare; paternalistic and classical model of healthcare

- Personal need necessitated involvement in caring for oneself, which

was further catalyzed by family, friends (who have similar conditions)

and attending physicians


Barriers to patient engagement. - Social and economic factors

- Lack of awareness of how to participate further (beyond caring for

oneself)

- Lack of avenues to participate

Perception of DOH-level patient engagement.

- No activities whatsoever from DOH to engage patients

- Some activities in LGU engage townspeople and sometimes used as

avenue for local health services

The individual patient interviewees showed less awareness of patient

engagement and active participation in one’s health care. Concern and the

concomitant anxiety regarding their condition have prodded some of these

patients to “research” on their diagnosis. Such avenues being utilized for

their “research” include Internet searches, asking physicians or other

healthcare providers (may be their attending physicians, or friends or

relatives in the medical field), and talking with friends or neighbors who

have similar conditions and fellow patients in the doctors’ waiting rooms.

The patient interviewees feel uninformed regarding resources, if any, that

they could tap to enrich the information and education needed for their

condition and the care for their condition. Furthermore, they perceive that

such resources may not be free and would entail additional expenses on

their part.

The respondents are not aware of any specific DOH activities regarding

education and support for their condition and the care for their condition.

The perception of some of the patient respondents outside Metro Manila is

that DOH activities in their communities are mainly immunization

campaigns and care for under-fives, where public healthcare workers go to

their villages for specific immunizations of children and where BHWs

periodically visit households to weigh children less than five years of age.

In some LGUs (such as Batac City), a monthly People’s Day is held where

local government officials hold public consultations. Residents of the city

can declare their concerns, requests, etc., which may not necessarily be

health-related, during the assembly and the LGU officials address these

accordingly.


Recommendations from patients’ groups / patients - Bottom-up approach; gathering of empirical data from grassroots to

know patient needs

- Provision of:

o avenues where patients can relay their

concerns/recommendations;

o feedback to patients from policy makers so patient can feel

that their voices are heard

- Health boards should have (an elected) member who is a patients or

part of a patient group

- Improvement of local health/patient registry

- Institutionalization of individual-centered health care

- Provision of genuine health care that also takes into consideration

issues in health care delivery

- Institutionalization of a “patient-centric” scorecard in hospitals

- Provision of training of health professionals in providing

psychosocial care

- Consideration of financial, spiritual, economic, and political

dimension of a disease

- Information dissemination to patients regarding their diseases

- Patients’ rights pamphlets and information dissemination in local

language

- Creative methods for information dissemination (using mass and

social media, text brigades, seminars while patients are on queue or in

the waiting area)

The respondents in both FGD and individual interviews feel that DOH

policies, directives, programs and activities are being formulated using a

“top-down” approach and thus do not necessarily reflect the true needs of

the populace and do not address the real situation at the front lines.

Respondents, particularly in the FGD, observe the lack of bidirectional

avenues in which patients’ feedbacks (whether these be concerns,

complaints, suggestions or recommendations) are relayed to the “top”

(managers, administrators, policy makers) and that the corresponding

responses and actions of the “top” are relayed back to the patients. These

observations were on the health facilities and the DOH levels. The

respondents feel that a lot needs to be done to improve health care delivery

including information dissemination and health promotion, the practice of


collaborative care, and recognition of the role of the patient in healthcare

decision-making. The patients suggest taking advantage of technology for

health promotion and patient education. They also demand for a shift of the

purely biomedical care practiced by healthcare workers to consider

psychosocial aspects, and for healthcare workers to listen attentively to and

have two-way communications with patients.

Although this is the initial thrust, the respondents believe that their

involvement in decision-making should not be limited only to self-care.

Patients should also be involved in the decision-making processes in health

and health care in the health services they belong to, in their LGU, and in

the national level. The creation of a patients’ registry could facilitate

communications between patients and the “top”.

NON-PARTICIPATORY OBSERVATION

A patient group in action The Diabetes Association of Pateros (DAOP) was formed through the

efforts of one of the municipal doctors, a diabetes specialist. Diabetes clinics

are held twice a week in one of the Barangay Health Stations of Pateros,

manned by the diabetes specialist and DAOP volunteers. Aside from clinical

consultations with the diabetes specialist, activities include blood glucose

testing, measurement of blood pressure, BMI and waist circumference, and

aerobic exercises. DAOP members, usually officers, actively attend

conferences and symposia for people with diabetes and disseminate lessons

learned during the twice-weekly consultations. People with diabetes from

Pateros pay a minimal membership fee in order to join. Financing is out-of-

pocket, especially as not all diabetes medications are available at the health

center pharmacy. Different pharmaceutical companies provide majority of

the diabetes care materials (diaries, leaflets, glucometers and glucose strips)

used by the group. The group seems to be active internally but is passive in

terms of involvement and participation outside their assemblage.

A Department of Health – retained hospital In the Bataan General Hospital, health promotion and patient education

towards self-management and patient engagement are actively fostered.

Leaflets on different conditions, on healthy lifestyle and smoking cessation

are readily available in strategic areas of the hospital. There is a health


promotion office manned by a health promotion nurse that offers

counseling to patients. One of the quality objectives of the hospital is “To

improve hospital services through customer’s active participation”.

Local government units The City of Balanga in Bataan province boasts itself as a healthy and smoke-

free local government unit. It has an interactive and responsive government.

The current administration involves its populace: consultative meetings are

the norm and the mayor and his board members hold office in different

barangays to be more accessible to the people. Governance is highly

inclusive and participative; for its smoke-free ordinance, senior citizens have

been given the power to monitor compliance and issue violation tickets in

cases of infringement. Other health-related activities of the city include,

among others: intensive health promotion, primary prevention and healthy

lifestyle advocacy (Balanga City Go4Health), nutrition programs in schools,

organic farming, and anti-alcohol and anti-illicit drugs campaigns.

In Bangued, Abra, a highly paternalistic type of medical care is observed.

Informal interviews revealed that, in a number of cases, particularly among

private practitioners, patients are not involved at all in the clinical

management of their condition. Beyond the provision of the diagnosis,

patients may no longer be given any other information including what

specific medicine they are given, which are dispensed unlabeled either by the

doctors themselves or through connected drugstores, wherein the doctor

writes the prescriptions in code so that only the connected drugstore can

interpret this.


CHAPTER V

DISCUSSION

Similar to most low- and middle-income countries, the Philippines is faced

with the double burden of disease and has among its ranks, health care

workers trained and more accustomed to the delivery of acute and curative-

directed care. The emergence of chronic conditions more than two decades

ago has yet to shift the paradigm in the Philippines.

The “classical model of care” was defined by psychiatrist R.D. Laing (1971)

as a “set of procedures in which all doctors are trained”, the set of

procedures composed of collecting information on the chief complaint and

medical history, doing ancillary and laboratory tests as needed, arriving at a

diagnosis and prescribing treatment and providing the prognosis. It

concentrates on the concept of the disease, the importance of the diagnosis

and the identification of treatment options, which are likely to be successful.

The physician is traditionally viewed as the “expert”, is in an authoritarian

position, and is the dominant healthcare professional; the patient is expected

to “comply” with the physician’s prescription and advice; and the disease is

of major importance while other “external factors” (social, psychological)

may be given less attention. In contrast, a collaborative type of care gives

attention to the psychosocial aspects of the patient (De Ridder et al. 2008)

and involves, enables and engages the patient in caring for the condition

(WHO 1996); and eventually actively involves and engages the patient

towards more responsive health services and policies that reflect and

provide answers and solutions to the actual needs of these people.

In order for patient engagement to be institutionalized within the structures

and systems of the Department of Health, the DOH has to assume the role

of Principal Engager for patient engagement in the public health sector. The

Principal Engager would systematize and promote patient engagement at the

healthcare professional level (patient-doctor relationship/interpersonal

influence), at the healthcare service / healthcare organization level, and at

the community and societal level. As the Principal Engager, the DOH would

be the main mover for the engagers to assist the patient in attaining full

engagement, considering various behavior change theories for each of the

phases of patient engagement.


Strategies that the Principal Engager needs to undertake and that will involve

the different engagers and influencers have to be formulated in order for the

patient to successfully traverse the different phases of engagement: to be

given appropriate information and support for a patient in the blackout phase

to be aroused and to contemplate engagement; to be provided the necessary

knowledge and skills and to stimulate perceived self-efficacy for them to move to

the adhesion phase; and to be given further reinforcements to attain full self-

determination to arrive at and sustain full health engagement status. Upon

attainment of the eudaimonic project phase, patients will then have the

capability of self-determining tailor-made and context-based disease

management and self-care strategies; furthermore, they may make more

meaningful contributions to health care and services.

The different phases of Barello and Graffigna’s (2015) Patient Health

Engagement Model correspond to the different stages of the continuum of

engagement presented in Carman et al.’s (2013) Multidimensional Framework

for Patient and Family Engagement in Health and Health Care, whether at the

individual level, the health organization/health system level, or the

community/societal level. The patient traverses the phases of patient

engagement for each level (Figure 5). It is assumed that before the patient

can make meaningful contributions at the health organization level, s/he, at

the least, has already been empowered and enabled with the knowledge and

skills for self-care and to make informed decisions regarding health care.

Similarly, before the patient can make meaningful contributions at the

policy-making level, the patient has already been activated and is or has been

involved in health organization design and governance.

Figure 5. Phases of patient engagement in the multidimensional engagement continuum


Thus, patients would undergo all the phases of engagement in each level

(Figure 6), and level-specific strategies have to be formulated to engage

patients, not only for them to accept that the “patient” self is only one of

their possible selves and to make well-informed decisions regarding their

care, but also towards sharing leadership in pertinent health service / health

system activities and in policy-making pursuits. Additionally, it may be

beneficial to initiate engagement even before the level of the patient-health

care provider consultation, either through community-based engagement

activities or wider engagement-dissemination campaigns. These may likewise

supplement and sustain the different levels and phases of engagement. A

level is thus added prior to the stated three levels of patient engagement in

the multidimensional engagement continuum (second row, Figure 6).

Figure 6. The multidimensional patient engagement continuum in the context of the Philippines

THE CONTINUUM In the current state of affairs of public health care in the Philippines, two-

way interactions between the recipients of care and the care providers are

still quite extra-ordinary. Consultations between the patient and provider are

mainly limited to the provision of biomedical care in the classical model; and

patient activation is at its minimum. Consultations between care recipients

and health service officials for health facility organizational design and

governance are usually in the form of patients’ satisfaction surveys done

merely to fulfill accreditation requirements. At policy-level, informative


rather than consultative meetings have been observed. Involvement and

shared leadership may be seen during consultations in Family Physician-led

health care services. In the Philippines, Family Medicine specialists are

trained in providing biopsychosocial care (Dionisio; Leopando & Olazo).

Involvement was noted in the Bataan General Hospital (organizational

design and governance) as well as in the City of Balanga (policy-making

level).

Consultation, activation and arousal

Activation of patients towards the arousal stage of patient engagement is

initiated in the earlier consultations with health care providers and

educators: whether in the initial visits of community-based health care

workers; in the first meetings with health care providers for specific

complaints or conditions; or in the introduction of patient representatives to

health boards and policy-making bodies. Activating patients, or informing

them regarding their condition and what needs to be done in caring for their

condition, prepares the patients to become better equipped for decision-

making in healthcare. It lays down the foundations of necessary knowledge

and skills towards the care for their condition that may motivate them

towards self-care. Furthermore, it may stimulate the patients’ perceptions of

appropriate health care needs and the corresponding services that patients

should be receiving from health facilities. Activating the patient on their

possible roles and functions as representatives in health boards or policy-

making bodies is the first step for them to be made aware on how to

become involved, and eventually become partners and share leadership in

health and healthcare governance and policy-making.

Activating the patient for self-care Ku and Kegels (2014b) conducted a study among patients with diabetes in a

hospital-based first line health service (the Veterans Memorial Medical

Center in Quezon City) and two local government health units (the RHUs

of Batac City and Pagudpud, Ilocos Norte) to evaluate diabetes knowledge,

attitudes, perceptions, and self-care practices and measure the Patients’

Assessment of Chronic Illness Care (PACIC). The PACIC, a 20-item

questionnaire designed by Glasgow et al. (2005), makes use of a 5-point

Likert scale with 1 (almost never) as the lowest and 5 (almost always) as the

highest rating and asks questions related to different aspects regarding

providing collaborative care: patient activation, delivery system design, goal


setting, problem solving, and follow-up/coordination. Overall PACIC rating

was low in the hospital-based facility (2.6) and was slightly above the

midpoint for the RHUs (3.2). Table 6 lists the PACIC ratings for Veterans

Memorial Medical Center (VMMC) and for the Batac City and Pagudpud

RHUs.

Table 6. Patients’ Assessment of Chronic Illness Care of people with diabetes consulting at two different

first line health services. (Adapted from Ku & Kegels 2014b).

Patients’ Assessment of Chronic Illness Care

Veterans Memorial Medical Center (n=350)

Batac City and Pagudpud RHUs (n=199)

Median (binomial interpolation of 95% confidence limits) Summary of overall score 2.6 (2.1-3.2) 3.2 (3.1-3.3) Patient activation 2.6 (1.6-3.6) 3.5 (3.4-3.7) Delivery system design 3.3 (2.5-4.0) 3.6 (3.4-3.8) Goal setting 2.6 (2.0-3.2) 3.1 (3.0-3.3) Problem solving 3.0 (2.7-3.2) 3.3 (3.1-3.5) Follow-up/coordination 2.1 (1.8-2.3) 3.0 (2.9-3.2)

The participants from the VMMC, who are being provided family medicine-

based first line health services, had significantly higher knowledge ratings

(mean VMMC=70.7%; mean RHU=58.7%; p<0.001); higher positive

attitudes (mean VMMC=3.7; mean RHU=3.3; p=0.002); and higher

perceived self-efficacy (mean VMMC=3.7; mean RHU=3.2; p<0.001) than

those from the RHUs. Self-care practices in terms of proportions of

participants utilizing health services (mean VMMC=78.8%; mean

RHU=37.0%; p<0.001), adherent to medications (mean VMMC=93.7%;

mean RHU 52.4%; p<0.001) and adherent to exercise (mean

VMMC=66.1%; mean RHU=32.2%; p<0.001) were also better among

those consulting at the VMMC. It appears so that the more knowledgeable

the patients are, the more “critical” they are of the care being provided

them, although the presence of culturally-competent healthcare workers in

the RHUs may also affect the assessment of care being delivered to them.

Interestingly, after arousing/activating the patients from the RHUs in a self-

management education and support project implemented by the same

researchers (Ku & Kegels 2015), statistically significant improvements were

noted in the PACIC ratings and in four of the five PACIC subscales one

year after full implementation (Table 7).


Table 7. Change in PACIC ratings one year after implementation of the First Line Diabetes Care (FiLDCare) Project in Batac City and Pagudpud (adapted from Ku & Kegels 2015) Patients’ Assessment of Chronic Illness

Care

Pre-implementation (n=164)

Post-implementation (n=164)

Wilcoxon’s signed-rank test p value

Median (binomial interpolation of 95% confidence limits)

Summary of overall score

3.2 (3.0-3.4) 3.5 (3.3-3.6) 0.009

Patient activation 3.3 (3.0-4.0) 3.7 (3.7-4.0) 0.026 Delivery system design

3.7 (3.3-3.7) 3.7 (3.3-4.0) 0.230

Goal setting 3.0 (3.0-3.0) 3.4 (3.2-3.6) 0.017 Problem solving 3.0 (3.0-3.2) 3.5 (3.2-3.8) <0.001 Follow-up/coordination

3.0 (3.0-3.0) 3.2 (3.0-3.6) <0.001

The education and skills development provided through the self-

management education and support activities of the project apparently

increased perceived self-efficacy to arouse and increase adherence of the

people with diabetes who participated. However, as explained by the

qualitative interviews conducted afterwards, the participants deemed that

improvements in the delivery system design were not addressed as the

RHUs were still not able to provide the needed laboratory tests and

medications (Ku & Kegels 2015).

Activating to arouse patients through a combination of direct health care

provider-based and community-based self-management education may be a

good strategy to apply in engaging patients.

Involvement and adherence

After having been activated and aroused, the patient moves from the

dormant listener to a participatory actor whose preferences and

recommendations are considered. In the individual level, this would equate

to a patient already equipped with enough knowledge and skills to adopt and

adhere to proper self-care. These knowledge and skills, complimented with

support and motivation from the external environment (the care providers,

the family, other members of the community) may increase a patient’s

perception of self-efficacy to to do the things needed to be done for their

condition.

In the cross-sectional study by Ku and Kegels (2014a) among people with

diabetes in Quezon City and Ilocos Norte, they were able to demonstrate


that a higher level of perceived self-efficacy positively contributed towards a

person with diabetes doing the things needed to be done for his/her

condition (i.e., adherence to medications, diet and exercise; foot care;

monitoring; follow-up).

Aside from the demonstrated effectiveness of activating patients towards

the arousal stage of patient engagement, the combination of direct health

care provider-based and community-based self-management education and

support increased perceived self-efficacy. Increasing self-efficacy may

stimulate the patient to progress to the next phase of engagement:

adherence.

With the provision of self-management education and support to patients,

and possibly proper health education and health promotion to other

members of the community, people may already be able to move from the

black-out phase to the arousal phase and, consequently to the adherence

phase and, finally, full patient engagement towards caring for one’s self.

Once patients have reached the adherence phase in caring for one’s self,

they may already be able to make meaningful contributions beyond the

individual and may already be ready to move towards the next level of the

continuum: the health organization. Actively encouraging involvement of

patients in the organizational design and governance of a health facility as

well as in policy-making may ensure that the healthcare environment that

will be created is well suited to the needs of the people. However, patients

will need to be educated on governance and policy-making for them to take

these roles.

Shared leadership and the Eudaimonic project phase

This phase of engagement is not yet evident in the Philippines as is the case

in low- and middle-income countries, and no publications on any local

studies regarding this subject was found even at the individual level. In high-

income countries such as the Netherlands, the United States of America,

Canada and the United Kingdom, involvement of patients as organized

groups in policy-level decision-making has been evident.

As stated by Collins and Moore (2014; Table 3.1, cfr page 23) the patient

plus the health care professional, along with a government-relations


professional, are the “golden triad” of public policy change. However, it

should be noted that constant and consistent equal participation in public

policy-making (in the neo-corporatist model) may lead these patient groups

to focus too much on professionalization, thereby moving them away from

the people they represent and negatively affecting their democratic potential

(van de Bovenkamp el al 2009; Table 1.2, cfr pp. 17-18).

PROPOSED ACTIVITIES IN THE DIFFERENT LEVELS OF THE ENGAGEMENT CONTINUUM TO PROMOTE AND SUSTAIN PATIENT ENGAGEMENT

Level 0: Initiation of engagement prior to direct care / individual level In the Philippines, routine annual medical examinations are unusual. The

standard practice is that people consult with medical professionals if and

when they feel symptoms. Community-based health promotion and

information dissemination activities may be helpful in activating and

arousing a patient in the blackout phase and recognizing the “I am an ill body”

phase of engagement. These activities may target those who are yet unaware

of any illness and those at risk.

Furthermore, those beyond the blackout phase may also benefit from

community-based activities to support advancement towards and to sustain

full engagement.

Level 0 activities at the local / LGU level

Community-based activities at the local level may be implementation of

local government policies, such as the case of Balanga City. Since the

enactment of the Local Government Code in 1991, the power, responsibility

and the resources for the performance of certain functions have been

transferred from the national to the local governments. This means that the

LGUs are autonomous, independent, and clearly perceived as a separate

level of government over which central authorities exercise little or no direct

control (de Guzman & Reforma, eds., 1993). Thus, Level 0 activities, at

present concentrating more on health promotion and health education

where these are being implemented, are sporadically rather than consistently

observed across all LGUs. The fact that LGUs have corporate status and

have the power to secure resources to perform their function could also

equate to inequity, where LGUs of higher economic status may have more


resources to expend towards such activities. Political will is likewise a major

determining factor for level 0 activities at the local level; as observed by

some of this study’s respondents, the whims of local government officials

strongly influence activities in the LGU.

The central government, through the DOH, should make attempts to

overcome inequities between LGUs in implementing Level 0 activities. The

DOH has to play an active role in motivating proper implementation and

ensuring continuity of implementation by consistently monitoring and

evaluating LGU Level 0 activities.

LGU Level 0 activities may include activation of the populace through

health promotion and activation of patients through specific health

education including self-management education, and provision of support

and motivation to local health workers to practice the principles of patient

engagement.

Level 0 activities at the DOH (central level)

The Department of Health can support local level 0 activities by producing

health promotion and behavior change materials (informative posters,

leaflets) that can be distributed in the community.

The DOH, through the Health Human Resources Development Bureau

(HHRDB) can provide training for local health care workers particularly

community-based health workers (BHWs), volunteers and “peers” regarding

patient education and support towards engagement. To augment the faculty,

the HHRDB can tap specific professional organizations and medical

specialty societies. Training of local healthcare workers is discussed further

in the succeeding section (Level 1 activities).

Educational and support materials, such as software programs, may be

produced and disseminated by the DOH to the local health care workers.

The Institute of Tropical Medicine in Belgium has interactive software that

was designed for European medics assigned in Africa

(http://www.kabisa.be/). The Kabisa software has educational and support

features: a trainee can learn diagnosing certain tropical conditions through a

certain presenting symptoms; and the software may suggest particular

clinical and/or laboratory tests to perform based on the data provided by


the user. Although this material is aimed to support physicians in clinical

decision-making, the concept may be used to support health care workers

and health educators in health promotion activities in the community and in

the provision of specific self-management education to patients.

On a wider, more general scale, the DOH, through the Disease Prevention

and Control Bureau (DPCB) can utilize mass and social media to increase

awareness and “advertise” patient engagement, in conjunction with the

health promotion and behavior change materials distributed locally.

According to Internet statistics

(http://www.internetworldstats.com/stats3.htm), there are more than 47

million Internet users and 30 million Facebook users in the Philippines

(43% and 27% respectively, 2015 Philippine population est). Maintaining a

pro-active and interactive Facebook page already has the potential of

reaching out to and contribute towards activating and arousing more than

one third of the Filipino population towards health engagement. On a more

ambitious scale, having and maintaining a website for patients akin to that of

the National Library of Medicine of the United States’ National Institutes of

Health (https://www.nlm.nih.gov/medlineplus/) may mean a wider reach

with more available materials for the populace. In addition to Internet-based

technologies, the use of mobile phones and short messaging systems can

also increase the reach of health promotion and education activities, as has

been demonstrated in a number of studies

(http://jhi.sagepub.com/content/15/1/17.short?rss=1&ssource=mfc). The

possibility of tapping print and broadcast media should likewise be explored.

Utilizing certain local artists and actors/actresses for health promotion

activities should be considered. For example, the phenomenon that is of Eat

Bulaga’s Kalye Serye (the main characters of which have been featured in the

2015 holiday issue of Readers’ Digest) may also be used to transmit good

health practices, aside from the good Christian values it promotes

(http://www.cbcpnews.com/cbcpnews/?p=65552). The use of mass and

social media should not be discounted. Studies have shown the considerable

degree of influence that these means of promotion and information

dissemination can have (Stern 2015). As was cited in the literature review,

involvement of patients in the preparation of the contents of the web

page/site, the text messages and print and broadcast media promotions is

recommended as this may equate to higher effectiveness.


Level 1: Direct patient care / individual level The classical, paternalistic, purely biomedical care model that is still widely

practiced in the Philippines needs to be replaced with a model of care that

considers psychosocial aspects and involves patients in decision-making, and

eventually to equal participation and leadership. The Philippine Academy of

Family Physicians requires its members to have adequate training in the

biopsychosocial approach and conducts periodic training on active listening

skills and the biopsychosocial approach to its members, and to interested

general practitioners and rural physicians nationwide. However, training of

physicians alone will not suffice. A physician, particularly government

physicians who see between 50-100 patients per day in addition to attending

to administrative duties, may not have enough time to provide education

and counseling to patients. Redistribution of standardizable tasks may be

considered, especially in public health facilities. Training of other health care

workers (nurses, midwives, pharmacists, medical technologists), community-

based health workers as well as the creation of peer educators (people who

have certain conditions and deemed “experts” of their condition) may play a

large role in the activation of patients towards adherence, and in supporting

these patients towards the full engagement phase. As was mentioned in the

preceding section, the DOH can tap professional organizations and medical

specialty societies to augment the faculty. Additionally, the DOH can

establish training of trainers modules, identifying and providing intensive

training to regional, provincial and local trainers who can then disseminate

learnings in these levels and who can perform supportive supervision to the

health care workers.

A First Line Care Team composed of pre-existing formal and informal

healthcare workers (including volunteers and “peers”) may be created to

organize provision of self-care education and activate and support the

patient towards full engagement. Simply, this could be composed of the

rural health unit staff, with the doctor and/or the nurse providing the initial

education and activation and the midwives and barangay health

workers/volunteers/peers providing support. A framework delineating

possible tasks for each cadre may be prepared, together with algorithms of

the standardizable tasks for the less skilled members of the team. The

interactive software mimicking the principles of Kabisa may also be designed

to contain education and support materials for Level 1 activities.


Training of the local formal and informal health care workers should thus

encompass community-based as well as direct patient-care based provision

of health promotion and education (Level 0 and Level 1 activities).

Level 2: Organizational design and governance level Akin to the Bataan General Hospital’s quality objective of patient

participation in the improvement of its health services, all hospitals should

be enjoined to practice a truly participatory type of governance, and not just

be required to submit regular reports on client satisfaction.

The inclusion of the “expert” or “fully-engaged patients” in organizational

governance may equate to some re-design of the health facility organization:

for example, patients may co-lead in hospital safety and quality

improvement activities as delineated in Figure 6; or may have seats in the

hospital board.

Inasmuch as the DOH is in the process of establishing a scorecard for its

retained hospitals, a patient-centric scorecard may be implemented. Such

patient-centered scorecards may likewise be implemented as part of DOH-

accreditation process(es) of any health facility with direct patient contact to

enforce implementation of patient engagement in general and participation

of patients, who should be at the least in the adherence phase of

engagement, in governance in particular. Patients in the latter phases of

engagement would have more expertise regarding their condition and the

care for their condition, and thus concerns on their credibility as a source of

knowledge regarding their condition may no longer be raised. However,

additional information on technical terms used may still need to be provided

(Boivin et al., 2014;Table 5.5, cfr pp. 33-34).

Level 3: Policy-making level Local Level

Coordination with and cooperation of local government units (LGU) for

involvement and shared decision-making with pertinent patients/patients’

groups need to be sought. Pro-active, participatory and health-oriented

LGUs, such as the City of Balanga, may be highlighted and endorsed

(through recognition, awards) for these to be emulated. Local level policy-

making that involves the community should be encouraged.


National Level

National policies should be crafted based on evidence garnered from the

grassroots level; whether in the form of evidence-generating research or

participation of the people who will be primarily affected by the said

policies. Research may even be conducted by the patients themselves: as

demonstrated in the Netherlands, the Dutch neuromuscular organization

produced a synthesis of needs and preferences, which includes in some

cases even producing full-blown consultations, reports and figures to

communicate their needs in relation to biomedical innovations (Boon and

Broekgaarden 2009; Table 4.3, cfr pp.26-27). Additionally, as Bridges and

Jones (2007; Table 4.6, cfr p.29) have observed, a patient-based Health

Technology Assessment (HTA) can promote the antecedents of

empowerment by both informing patients about medicine and informing

medicine about patients. Such patient-generated research or evidence

gathered from patients should however be monitored for true

representativeness.

The previously mentioned “golden triad” can be utilized in policy

formulation, but safeguards must be in place to protect the patient

organizations from focusing on too much professionalization.

Additionally, safeguards should also be in place so that patients/patients’

organization may not be unduly influenced by stakeholders who may have

conflicting (financial) interests in upcoming policies and decisions where

patients are actively participating in. Patients/patients’ groups who are

involved in governance and policy-making may be approached by lobbyists

and sway them to their favor. The presence of pharmaceutical companies in

certain patients’ groups’ activities may be within the scope of their

“corporate social responsibility”, but their products are printed in the

materials that are distributed and the group members know the

pharmaceutical companies’ representatives and the companies they

represent. The patients involved in governance and policy-making thus may

consider that they owe pharmaceutical companies, which provide materials

and support to their activities, and may, in return, patronize the said

companies when making decisions.

In high-income countries, declarations of conflict(s) of interest are required

for people participating in said policy-or decision-making activities.


However, such may not suffice in the Philippines. The value of the

contributions of pharmaceutical companies to patients’ groups is

recognized. However, it would be more preferable if the materials they

provide were de-identified. Furthermore, it would be more preferable that a

(central) distribution arm would collect materials from the pharmaceutical

companies and give these to the patients’ groups. This distributor thus

anonymizes the pharmaceutical companies and bars the possible links that

could be forged between the pharmaceutical companies and the patients’

groups. Such could also be a function of the DOH office, which will

undertake patient engagement.

MONITORING AND EVALUATION

Output and outcome measures Initial monitoring of patient engagement institutionalization may concern

intermediate (output and outcome) results of patient engagement, as

indicated in the level-based activities, i.e., number of healthcare workers

trained on patient engagement, number of health facilities implementing

patient engagement.

Impact on universal access Inasmuch as institutionalization of patient engagement aims to achieve the

goals set forth in UHC, the long-term indicator of the effectiveness of

institutionalization of patient engagement would be universal access to

health care. Effects of patient engagement on access to health care may be

evaluated making use of the framework proposed by Levesque et al. (2013)

(Figure 7) on patient-centered access to healthcare.


Figure 7. Framework for patient-centered access to healthcare (Levesque et al. 2013)

In this framework, Levesque (2013) proposes that access is an interface

between the characteristics of persons, households, social and physical

environments and the characteristics of health systems, organizations and

providers. Thus there are provider-related factors (uppermost boxes),

process factors in which access is realized (boxes on arrow), and user-related

factors (lowermost boxes). Access is thus viewed as (1) the possibility to

identify healthcare needs, corresponding to the arousal phase of patient

engagement; (2) the possibility to seek and use healthcare services and reach

and obtain healthcare resources (corresponding to user-related factors boxes

2-4) and which may contribute towards a person achieving the adherence

phase of engagement; and (3) to be actually offered services appropriate to

the needs for care, which may influence full engagement. Correspondingly,

providers of care should have the following characteristics: (1)

approachability; (2) acceptability; (3) availability and accommodation; (4)

affordability; and (5) appropriateness. The process factors may also be used

as intermediate indicators.

However, the feasibility of using Levesque et al.’s framework as the

framework for monitoring and evaluation of effectiveness of patient

engagement in the Philippines needs to be explored. Furthermore, the

specific indicators for the process factors (perception of needs and desire

for healthcare, healthcare seeking, healthcare reaching and utilization, and


healthcare consequences) need to be studied if these are truly representative

in terms of universal access to health care in the Philippines.

Patients’ satisfaction surveys could be modified to measure patient-

dependent health care consequences (satisfaction, economic) and include

some elements of Glasgow’s PACIC, which could monitor patient

activation and provision of collaborative care in health facilities. Inclusion of

patient engagement measures in the patients’ satisfaction survey may also be

convenient for the health facilities in terms of collection and analysis.

Additionally, improvements in the current handling of patient satisfaction

surveys with regard to reporting and feedback have to be made. These

improvements may already have been addressed in the recently concluded

Client Satisfaction Study commissioned by the Health Facility Development

Bureau (HFDB) of the DOH through the Philippine Council for Health

Research and Development, where encoding of results was programmed to

be done electronically and results are transmitted to the DOH in real time.

Other measures, such as evaluating improvements in knowledge and skills

of patients can be utilized but could be resource-intensive.

Health care consequences on health may be measured individually through

clinical endpoints, and collectively through mortality and morbidity reports.

In high-income countries such as the United Kingdom where health

information systems have long been in place, the National Health Service

can monitor individual clinical endpoints such as laboratory results of

patients with chronic conditions to evaluate the performance of health

services. The DOH health information systems installed in the DOH-

retained hospitals has the capability of doing such. However, inasmuch as

not all electronic files are transmitted to the DOH, monitoring and

evaluation through clinical endpoints especially those based on laboratory

results may not be possible at the central level but only at the level of the

hospital.

Whether monitoring is done in the hospital or in the central level, human

resources dedicated to this activity are needed. In doing so, follow-up of

issues needing feedback to both the patients and the facilities involved, in

whatever circumstance (for example, handling of non-conformance or

extending recognition and praise), can be done without undue delay.


QUO VADIS, DOH? With the suggested level-specific activities mentioned above to accompany

patients in their journey through the different phases of engagement and

possible monitoring and evaluation measures, where does the DOH start as

the principal engager? The logical first step would be for patient-specific

activities to be organized in a single unit in the DOH.

The “Patient Affairs Unit”

Vision and Missions It is envisioned that in the Philippines, patients and families will be fully

engaged in health care. The primary objective of the “Patient Affairs Unit”

would be to champion and safeguard patients by advancing patient and

family engagement in health care in the Philippines. This aim is envisioned

to be achieved by:

1. Promoting patient-centered care and shared decision-making

2. Fostering patient education, empowerment and enablement

3. Encouraging partnerships and shared leadership between patients,

health care providers, health care facility boards, and health policy

makers

Functions Functions of the “Patient Affairs Unit” would include but not limited to:

1. Coordination of all activities on patient engagement, such as

a. Patient engagement-related training of healthcare workers (in

cooperation with HHRDB)

b. Monitoring and evaluation of patient engagement activities in

all levels (in cooperation with HFDB, BHFS)

c. Enforcement of patient engagement activities in all levels in

coordination with pertinent DOH accreditation bodies.

d. Production of health promotion and education materials

2. Accreditation of patient organizations

3. Maintenance of a patient and patient organization registry

4. Central processing unit for patients’ feedbacks, whether positive or

negative

5. Reference center for recruitment of patients/patient organizations in

research, HTA, policy-making activities of the DOH

6. Monitoring of patient engagement in research, HTA, policy-making

activities of the DOH


7. Production and distribution of patient engagement materials for care

providers as well as for patients

8. Distribution of de-identified/anonymized pharmaceutical companies-

produced patient engagement materials and other patient care

materials to patients/patients’ groups

Staff Complement Ideally, this “Patient Affairs Unit” should be an independent/separate office

in the DOH. The fully working Unit where patient engagement activities

would already be completely developed and implemented would be

expected to have a minimum composition of the following key personnel

with their respective expected minimum duties and responsibilities:

1. Unit Chief

a. Oversees the day-to-day operations of the Unit

b. Reports to the Secretary of Health regarding activities of the

Unit

2. Monitoring and Evaluation Officer

a. Receives reports of the liaison officers (specific activity reports,

reports of client satisfaction surveys, reports of health

outcomes, and reports of patients’ feedbacks)

b. Collates and analyses reports

c. Make the necessary recommendations and appropriate actions,

including feedbacks to patients, DOH offices, LGUs and

health facilities based on report results

3. Liaison Officer, DOH (Internal)

a. Collaborates and coordinates with other DOH offices for Unit

functions where other DOH offices are involved

b. Monitoring and evaluation of the Unit’s activities where other

DOH offices are involved

c. Collaborates and coordinates with DOH-retained hospitals

d. Monitors and evaluates patient engagement activities in DOH-

retained hospitals

e. Monitors and evaluates client satisfaction survey results of

DOH-retained hospitals

f. Monitors and evaluates clinical endpoints, mortality and

morbidity reports of DOH-retained hospitals

4. Liaison Officer, Patients

a. Registry officer for patients’ groups


b. Coordinates with patients/patients’ groups

c. Monitors and evaluates levels of “involvement” and “partnership

and shared leadership” of patients/patients’ groups in research,

HTA and policy-making activities of the DOH

d. Receives feedbacks from patients/patients’ groups

e. Distribute materials to patients/patients’ groups (cfr functions

7 and 8,p. 63)

5. Liaison Officers, LGUs

a. Coordinate and collaborate with LGUs for community-based

and direct healthcare provider-based patient engagement

activities

b. Monitors and evaluates patient engagement activities in the

community and rural health unit/local government health units

c. Monitors and evaluates client satisfaction survey results of

local government health units

d. Monitors and evaluates clinical endpoints, mortality and

morbidity reports of local government health units

6. Liaison Officers, public hospitals

a. Coordinate and collaborate with public hospitals for patient

engagement activities

b. Monitors and evaluates patient engagement activities in public

hospitals


public hospitals


morbidity reports of public hospitals

7. Liaison Officers, private hospitals

a. Coordinate and collaborate with private hospitals for patient

engagement activities

b. Monitors and evaluates patient engagement activities in private

hospitals


private hospitals


morbidity reports of private hospitals

8. Information Technology and Media Officer

a. Maintains website/social media page(s) of the unit

b. Manages print and broadcast media activities of the Unit


c. Maintains telecommunications-based patient education and

support activities of the Unit

d. Manages and maintains software-based educational materials

of the Unit

e. Monitors and evaluates activities in social media page(s)

f. Monitors and evaluates print and broadcast media activities

g. Monitors telecommunications-based patient education and

support activities

h. Monitors and evaluates production and usage of software-

based educational materials

A roadmap for operationalization The following strategies are recommended to be implemented so that the

mandate of patient and family engagement in health care in the Philippines

is realized:

1. Education, empowerment and enablement of patients and their families

to be engaged in healthcare

2. Preparation of direct care providers and health facility administrators for

patient engagement in healthcare

3. Creation of the First Line Care Team

4. Monitoring and evaluation (including transparency and accountability)

5. Legislation and regulation

6. Partnership in health facility governance

7. Partnership in public policy (including research/production of evidence

for policy and HTA)

Early stages of implementation Although “units” do not necessarily require legislation for these to be

established in government agencies in the Philippines, the need for full-time

staff may be. However, a fully working “Patient Affairs Unit” is not a requisite

in the earlier stages of implementing patient and family engagement in the

Philippines. Priorities at this point would be: (1) education, empowerment

and enablement of patients and their families to be engaged in healthcare;

(2) preparation of direct care providers and health facility administrators for

patient engagement in healthcare together with (3) creation of the First Line

Care Team; (4) initial monitoring and evaluation, and making results

available for transparency and accountability; and (5) advocacy for

regulatory and legislative changes to establish patient and family engagement

in the Philippines.


However, the fifth strategy is not solely for the DOH to undertake. The

DOH may put forth regulatory changes that, for example, will (a) require

patient and family engagement competencies for certification and

accreditation of health facilities and (b) provide incentives and penalties for

involving/not involving patients and families in organizational governance.

However, advocacy for legislative changes would be better forwarded with

patients/patients’ groups and their supporters (including MeTA) at the

forefront. Such legislation may include (a) provision of recognition and

rewards (such as PhilHealth reimbursements) for care that fully incorporate

patient and family engagement, (b) multi-sectoral support for patient and

family engagement activities, (c) provision for involvement and shared

leadership of patients/patients’ groups in public policy-making bodies, (d)

inclusion of patient engagement competencies education and training in

curricula of medical courses, (e) requiring patient and family engagement

competencies for board certification of medical and paramedical

professions, (f) inclusion of health promotion and activation towards

engagement in health and healthcare in elementary and high school

curricula, etc.

Although strategies 6 and 7 (partnerships in health facility governance and

policy-making) are not prioritized, these may also be implemented at this

stage, as there are already fully engaged patients/patients’ groups who have

the capacity to be involved and to become partners in governance and

policy making.

Patient and Provider Preparation

Much of the education, empowerment and enablement of patients and

families is foreseen to take place in the communities and during clinical

consultations with their healthcare providers. Inasmuch as this is so, patient

engagement activities of the DOH at this point may be performed by the

Disease Prevention and Control Bureau (DPCB) in coordination with

HHRDB, Bureau of Health Facilities and Services (BHFS) and HFDB.

Duties and responsibilities of DPCB 1. Coordinate and collaborate with HHRDB, BHFS and HFDB for

initial patient engagement activities.

2. Coordinate with LGUs.

3. Implement (agreed upon) patient engagement activities.


4. Raise awareness of patient engagement through nationwide blitzes

and public announcements in broadcast and print media.

5. Create condition-specific educational materials (posters, leaflets) to

inform and educate patients and their families, translating medical

information (and medical jargon) to plain language and in dialects.

6. Maintain a website and/or social media page(s) where patients can

find materials on health and healthcare, including the condition-

specific educational materials above and can interact with the DOH.

7. Monitor and evaluate implemented patient engagement activities.

8. Make monitoring and evaluation results available for transparency

and accountability.

9. In coordination with HFDB, introduce measures of patient

engagement in the DOH Client Satisfaction Survey.

10. In coordination with HHRDB, (and possibly with medical specialty

societies), create a Patient Engagement education module for

healthcare workers and a Patient engagement education module for

patients and their families.

Duties and Responsibilities of HHRDB 1. Create and conduct training workshops for trainers of formal and

informal direct health care providers (physicians, nurses, midwives,

pharmacists, dentists, medical technologists, barangay health workers,

peer educators) on patient-centered care, self-management education

and support provision, shared decision-making, and the

biopsychosocial approach as delivered by a multidisciplinary team;

and on possible community resources (such as the Department of

Social Welfare and Development, possible existing patients’ groups,

community-based organizations) to facilitate partnerships outside of

the health facility to which the patients may be referred to for (self-

care) support (based on the contents of the Patient Engagement

education module for healthcare workers).

2. Knowledge management and preparation of educational and

decision-support materials (paper-based and/or interactive or non-

interactive software) that can be used by trainers for knowledge

transfer.

3. Monitor and evaluate effects of training (change in knowledge on

Patient Engagement; number of care providers trained; number of


care providers educating patients and families on patient engagement;

number of care providers practicing patient engagement)

Duties and Responsibilities of BHFS, HFDB

1. Coordinate and collaborate with respective health facilities for

training of care providers on patient engagement

2. Monitor and evaluate (initial) indicators* for patient engagement in

respective health facilities.

*initially could be (1) number of patients (and families) being

provided with education (based on the Patient Engagement education

module for patients and families) and (2) outcomes of the revised

Client Satisfaction Survey; eventually to include Levesque’s factors

(where applicable) and health outcomes.

Full implementation Eventually, after the activities on preparing the patient and the care

providers have been implemented, it is expected that a number patients will

move to the latter phases of Barello and Graffigna’s Patient Engagement

framework. At that point, the “Patient Affairs Unit” may have become fully

operational and some legislation may have been passed. Inasmuch as the

number of patients who are ready to be involved in governance will already

increase, full implementation of strategies 6 and 7 (partnership with health

facilities and eventually partnership in public policy) including monitoring

and evaluation of implementation of these strategies will be in order. The

education, empowerment and enablement of patients and their families to

be engaged in healthcare and preparation of direct care providers and health

facility administrators for patient engagement in healthcare activities will still

be continued. Monitoring and evaluation will be expanded to include other

outcomes and impacts of the patient engagement activities. Transparency

should be maintained.


CHAPTER VI CONCLUSIONS & WAYS FORWARD

Engaging patients in their health care and within the structures and systems

of the Department of Health involves a number of phases and different

levels that the patient needs to undergo. Being the national agency for

health, the DOH shall act as the principal engager. This will entail assisting

and supporting the journey of a patient through the phases of black out;

arousal and activation regarding their condition; involvement in and

adherence to plans in maintaining their own health, and involvement as

advisers in health services design and governance, and policy-making; and

finally to full engagement status where the patient makes decisions in

partnership with the health care provider, the health service managers, and

the policy-makers. Initiating changes in the different levels of the continuum

and implementing interventions to progress through the different phases of

patient engagement is complex, and will involve numerous sectors and

actors who may have conflicting interests. The DOH must be prepared to

undertake such arduous task and should have mechanisms in place to

implement, monitor and ensure sustainability of the different patient-

engagement activities, at the same time putting safeguards in place to ensure

that the outputs of patient engagement activities reflect the needs of the

patients.

In this early stage, patients in the (near) full engagement status should

already be sought and be involved for patient engagement implementation:

be it in the planning of the different activities, the crafting of promotional

and behavior change materials, or the construction of initial policies for

patient engagement.

The DOH should take advantage of the impending implementation of the

scorecard and modify this into a patient-centric scorecard to stress the need

to deliver patient- and person-centered care and engage patients in the

organizational design and governance of health facilities.

Due to healthcare devolution, cooperation and coordination of local

government units should be sought and maintained. Encouragement of and

recognition of LGUs who advocate participatory governance may motivate


collaboration. In this way, patient engagement may be fully implemented in

the local government health units and in the communities.

Aside from creating a cadre of “peer educators” to activate co-patients, the

possibility of stimulating fully engaged patients as future engagers should

not be discounted; this could augment sustainability of patient engagement

in the Philippines.

Involvement of other sectors to support patient engagement is essential.

Possible contributions of LGUs, healthcare facilities, medical (specialty)

societies, and mass media have been identified. Other government agencies

such as the Department of Social Welfare and Development and the

Department of Education as well as the private sector can also play active

roles in patient and family engagement.

Advocacy for regulatory and legislative changes to establish patient and

family engagement in the Philippines should be prioritized; and vigilance

regarding full implementation and continuity of patient engagement

activities should be maintained.

The full effects of patient engagement on access to healthcare may only be

realized years after its implementation. However, intermediate and process

indicators may be able to indicate positive (or negative) results of

implementation.


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