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Promoting patient-centred healthcare around the world IAPO, CHAIN, UNHCO and JFSCU are pleased to welcome you to a workshop on: Patient-Centred Healthcare: Aligning Healthcare Systems with Patients’ Needs Monday 3 November 2008 Kampala, Uganda

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Page 1: Promoting patient-centred healthcare around the world IAPO, CHAIN, UNHCO and JFSCU are pleased to welcome you to a workshop on: Patient-Centred Healthcare:

Promoting patient-centred healthcare around the world

IAPO, CHAIN, UNHCO and JFSCU are pleased to

welcome you to a workshop on:

Patient-Centred Healthcare:

Aligning Healthcare Systems with Patients’ Needs

Monday 3 November 2008Kampala, Uganda

Page 2: Promoting patient-centred healthcare around the world IAPO, CHAIN, UNHCO and JFSCU are pleased to welcome you to a workshop on: Patient-Centred Healthcare:

Promoting patient-centred healthcare around the world

IAPO would like to acknowledge the support of our workshop supporting organizations and sponsors:

Supporting organizations:

Workshop sponsors:

Pharmaceutical Research and Manufacturers of America

• Community Health and Information Network (CHAIN) • Uganda National Health Consumers/Users’ Organization (UNHCO) • Joyce Fertility Support Centre (JFSCU)

Page 3: Promoting patient-centred healthcare around the world IAPO, CHAIN, UNHCO and JFSCU are pleased to welcome you to a workshop on: Patient-Centred Healthcare:

Promoting patient-centred healthcare around the world

About IAPO and

background to this workshop

• Unique global alliance of national, regional and

international groups representing patients

• Established in 1999

• Crossing borders and diseases

• Vision: Patients throughout the world are at the

centre of healthcare

• Representing an estimated 365 million patients

worldwide

• www.patientsorganizations.org

Page 4: Promoting patient-centred healthcare around the world IAPO, CHAIN, UNHCO and JFSCU are pleased to welcome you to a workshop on: Patient-Centred Healthcare:

Promoting patient-centred healthcare around the world

IAPO’s Membership• 200 member organizations

• Membership spans 40 countries and all world regions

• Representing an estimating 365 million patients

International

•Alzheimer’s

Disease International

•Multiple Sclerosis

International

Federation

•Arthritis and

Rheumatism

International

Regional

•Latin American Cystic

Fibrosis Federation

•European Organization

for Rare Disorders

(EURORDIS)

•Community Health and

Information Network

CHAIN (Great Lakes Region

of Africa)

National

•Alliance for Patients’

Mutual Help Organizations

(Hong Kong)

•New Zealand Organization

for Rare Disorders

•Cancer Patients

Association of Slovenia

•American Diabetes

Association

Page 5: Promoting patient-centred healthcare around the world IAPO, CHAIN, UNHCO and JFSCU are pleased to welcome you to a workshop on: Patient-Centred Healthcare:

Promoting patient-centred healthcare around the worldPromoting patient-centred healthcare around the world

IAPO’s Mission

1. Realizing active partnerships with patients’ organizations, maximizing their impact through capacity building

2. Advocating internationally with a strong patients’ voice on relevant aspects of healthcare policy, with the aim of influencing international, regional and national health agendas and policies

3. Building cross-sector alliances and working collaboratively with like-minded medical and health professionals, policy makers, academics, researchers and industry representatives

We work towards our vision of patient-centred healthcare by:

Advocacy Capacity Building Partnerships

Page 6: Promoting patient-centred healthcare around the world IAPO, CHAIN, UNHCO and JFSCU are pleased to welcome you to a workshop on: Patient-Centred Healthcare:

Promoting patient-centred healthcare around the worldPromoting patient-centred healthcare around the world

IAPO’s Values

Accessibility: IAPO is committed to ensuring that the work it does is accessible to its members and partners.  Accountability: IAPO is accountable to its membership through our Annual General Meeting (AGM) and our Governing Board, elected by the members. The Board is the accountable body for IAPO and staff report directly to them.  Commitment to Diversity: We recognise and celebrate the diversity within IAPO’s membership. We realise the challenges that this commitment brings given language barriers, cultural difference, the differing resource levels of organizations and the global disparity in access to healthcare. Yet, we are committed to working in a way in which all patient-led organizations can be actively involved with IAPO, contributing their own unique perspectives.

Page 7: Promoting patient-centred healthcare around the world IAPO, CHAIN, UNHCO and JFSCU are pleased to welcome you to a workshop on: Patient-Centred Healthcare:

Promoting patient-centred healthcare around the worldPromoting patient-centred healthcare around the world

IAPO’s Values Inclusiveness: IAPO strives to be inclusive in all its work. We work with our members and our Board to ensure that IAPO’s services, events and membership structure are as inclusive as possible.  Independence: IAPO is a patient-led organization independent of government, industry and other professional organizations. IAPO’s strategic direction is set by our members through our Governing Board.  Representation: IAPO strives to be fully representative of patients’ needs and views. Given the diversity of IAPO’s membership, we recognise the challenges this entails. We ensure that consultation with members is an integral part of our work including undertaking an annual survey of members’ needs and using all this information to guide future projects and accurately represent our members at an international level. Transparency: IAPO strives to have clear processes for its work including its decision-making processes, utilising its website and other appropriate communication tools. IAPO also has an open, transparent framework to guide its funding agreements. IAPO works in partnership with a number of organizations; all formal partnerships are governed by clear and transparent guidelines.

Page 8: Promoting patient-centred healthcare around the world IAPO, CHAIN, UNHCO and JFSCU are pleased to welcome you to a workshop on: Patient-Centred Healthcare:

Why patient-centred healthcare?

Promoting patient-centred healthcare around the world

Page 9: Promoting patient-centred healthcare around the world IAPO, CHAIN, UNHCO and JFSCU are pleased to welcome you to a workshop on: Patient-Centred Healthcare:

Why ….Cont’d

Promoting patient-centred healthcare around the world

Page 10: Promoting patient-centred healthcare around the world IAPO, CHAIN, UNHCO and JFSCU are pleased to welcome you to a workshop on: Patient-Centred Healthcare:

Promoting patient-centred healthcare around the worldPromoting patient-centred healthcare around the world

Aims of the workshop

1. Introduce and discuss IAPO’s vision of patient-centred healthcare with patient groups

2. Explore the patient perspective on what patient-centred healthcare means to patient groups in Africa working in different countries and disease areas

3. Develop our capacities to promote patient-centred healthcare through presentations, sharing of case studies, provision of tools and facilitated exchange

4. Develop supportive networks between like-minded patient groups in Africa and initiative working relationships between patient groups and other healthcare stakeholders (policy-makers, health professionals, industry representatives, academics and others)

5. Identify potential strategies and actions for patient groups and for IAPO to promote patient-centred healthcare regionally and globally

Page 11: Promoting patient-centred healthcare around the world IAPO, CHAIN, UNHCO and JFSCU are pleased to welcome you to a workshop on: Patient-Centred Healthcare:

Promoting patient-centred healthcare around the world

Workshop Overview - Morning

9.30-10.45 Introduction to the day, welcoming remarks and

outline of meetingChair: Myrl Weinberg, Chair of the Board, IAPO and Robinah

Kaitiritimba –

10.45-11.00 Introduction to Patient-Centred HealthcareJo Groves, CEO, IAPO

11.00-11.30 Break

11.30-12.30 What difference would Patient-Centred

Healthcare make to your patients?

(Robinah Kaitiritimba and Ella Fearon-Low, Capacity Building Director,

IAPO)

12.30-13.30 Lunch

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Promoting patient-centred healthcare around the world

Workshop Overview - Afternoon

13.30-13.50 What difference would Patient-Centred

Healthcare make to the patients I work with?

Continued

13.50-14.15 Collaborating for positive change: Case Study

Robinah Kaitiritimba

14.15-15.30 Collaborating to advocate(Durhane Wong-Rieger – IAPO Board Member and Ella Fearon-Low)

15.30-15.40 Working with IAPO towards Patient-Centred

Healthcare(Myrl Weinberg and Esther Thompson – Membership and Events

Coordinator, IAPO)

15.40-16.00 Taking our messages forward(Jo Groves and Jeremiah Mwangi - Senior Policy Officer, IAPO)

16.00 Workshop End

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Promoting patient-centred healthcare around the world

Workshop – Getting to know each other and what we want to get out of today?

• Tell your group one thing about yourself

• Tell your group one thing you hope to get out of today

Page 14: Promoting patient-centred healthcare around the world IAPO, CHAIN, UNHCO and JFSCU are pleased to welcome you to a workshop on: Patient-Centred Healthcare:

Promoting patient-centred healthcare around the world

An Introduction to Patient-Centred

Healthcare

Jo Groves, Chief Executive Officer

IAPO Workshop3 November 2008Kampala, Uganda

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Promoting patient-centred healthcare around the world

Content of Presentation

• IAPO’s principles of patient-centred healthcare

• Patient perceptions of healthcare

• Patient-centred healthcare in practice

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Promoting patient-centred healthcare around the world

What is patient-centred healthcare?

Patient-Centred Healthcare Principles

• Respect and support for the individual patient, their wants, preferences, values,

needs and rights

• Choice and empowerment

• Patient engagement in health policy www.patientsorganizations.org/involvement

• Access and support

• Information that is accurate, relevant and comprehensive

www.patientsorganizations.org/healthliteracy

IAPO Declaration on Patient-Centred Healthcare can be accessed online at:

www.patientsorganizations.org/declaration

The essence of patient-centred healthcare is that the healthcare system is designed and delivered so that it can answer the needs of patients

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Promoting patient-centred healthcare around the world

Why patient-centred healthcare?

Research Evidence – There is growing evidence of the benefits of its practice (including

patient quality of life, improving physiologic measures and increasing efficiency of use of

healthcare services) See ‘What is Patient-Centred Healthcare?: A Review of Definitions

and Principles’ Available online: www.patientsorganizations.org/pchreview

Patients support for a patient-centred approach – An IAPO survey* in 2006 into the

perceptions of healthcare of 1200 patient group members in 12 countries** found that

patients had concerns relating to healthcare and favoured a patient-centred approach.

* The survey was undertaken by Consensus Research and supported by Pfizer Inc.

** The countries included in the survey were: UK, Germany, France, Hungary, Austria, Czech Republic, Italy, Spain, Belgium,

Sweden, Canada, Nigeria.

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Promoting patient-centred healthcare around the world

IAPO Study: Patients’ Organizations Members Perceptions on Healthcare

Objective - To provide an objective insight into patient organisation members’ perceptions on the state of

healthcare, future concerns, and reactions to government healthcare policies.

Survey Methodology

• The study was undertaken in 2006 with 1200 members of patients’ organisations in 12 countries*

• Random sampling of publicly available lists of patients’ organizations followed by random digit dialling

The study results:

• demonstrated strongly shared views on the needs and concerns of members related to currently

administered healthcare

• signalled a need for a shift to a more patient-centred approach to healthcare

• identified three recurring themes that illustrate shared concerns related to:

•timely access to the best treatment and information

•the right to participate in decisions at the individual patient level

•patient involvement in policy-making

* UK, Germany, France, Hungary, Austria, Czech Republic, Italy, Spain, Belgium, Sweden, Canada, Nigeria

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Promoting patient-centred healthcare around the world

Where patients stand on healthcare issues

Where key healthcare issues are concerned,members of patients‘ organizations express theirstrongest agreement with the need for:

•accurate, relevant and comprehensive information for patients and their caregivers, to help them make informed decisions about treatment [98%, 78%]

•ensuring access to necessary services, treatments and preventive care [97%, 77%]

•patient-centred healthcare policies that respect their unique needs, values and independence [95%, 66%]

Agreement on healthcare positions

Q7. Would you say you strongly agree, agree somewhat, disagree somewhat orstrongly disagree with each of the following statements?

98%

97%

95%

95%

95%

84%

78%

77%

66%

66%

62%

56%

0% 20% 40% 60% 80% 100%

Accurate, relevant and comprehensiveinformation must be provided to patients

and health care providers in anunderstandable format in order for them tomake informed decisions regarding their

Provisions should be made to ensure thatall patients can access necessary services,

regardless of their conditions or socio-economic status, including safe, high

quality and appropriate services,

Patients have a fundamental right to patient-centred health care that respects their

unique needs, preferences, values,autonomy and independence

Patients have the right and responsibility toparticipate, to the best of their ability, as

partners in making health care decisionsthat affect their lives

In formulating health care policy,governments should more actively take into

account the views of doctor and patients'organizations

Doctors should be free to prescribe themedicines they think their patients require,

without bureaucratic interference fromgovernment or regulatory agencies

Agree [NET[Strongly Agree

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Promoting patient-centred healthcare around the world

What patients want from their healthcare system

Members of patients’ organizationsassign top priority to:

•access to the treatment they and their doctors believe is best for them [81%] •reducing delays and waiting times for appointments and treatments [76%]•reducing paperwork so that doctors can spend more time with patients [67%]

Importance Ratings

% Top 4 Box

[7, 8, 9, 10 on 0-10 Scale]

Q5. How would you rate the importance of each of the following healthcare proposals orissues to you personally, on a scale from 0-10, with l0 meaning that it’s very importantto you personally, and 0 meaning not at all important?

81%

76%

67%

65%

63%

59%

0% 20% 40% 60% 80% 100%

Ensuring that patients have access to thetreatment that they and their doctorsbelieve is best for them, including the

newest medicines, medical devices andprocedures

Reducing delays and waiting times forpatients to get appointments and

treatments

Reducing paperwork for physicians sothat they can spend more time with

patients

Introducing a computerized central healthinformation system to provide vital

information in case of an emergency orhelp prevent the prescription of

medicines that might have harmful side

Engaging patients in health care policydecision-making to ensure that policies

reflect patient and family caregiver needs

Health guides, created and provided bypatient groups, that help families

maintain accurate health records, followtheir doctor's prescriptions andrecommendations, and provide

Total Members

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80%

68%

71%

70%

71%

76%

0% 20% 40% 60% 80% 100%

Reducing delays and waiting times for patients to get appointments

and treatments

Creation of a coalition representing key stakeholders such as patient organizations, health care providers, scientific societies, educators and pharmaceutical companies that participates in the development of health care policies and decisions

Public conferences and lectures created through a partnership between patient advocacy groups and health care professionals targeting both individuals and patient groups that provide information on personal wellness and disease prevention

Health guides, created and provided by patient groups, that help families maintain accurate health records, follow their doctor's prescriptions and recommendations, and provide information about nutritional, exercise and lifestyle choices

Engaging patients in health care policy decision-making to ensure that policies reflect patient and family caregiver needs

A partnership between a patient advocacy group and a government health care agency to create policy that would positively affect the treatment of all patients with a certain condition or disease within a fixed budget

Nigeria

Q5. How would you rate the importance of each of the following health care proposals or issues to you personally, on a scale from 0-10, with l0 meaning that it’s very important to you personally, and 0 meaning not at all important?

% Top 4 Box

[7, 8, 9,10 on 0-10 scale]

45

Promoting patient-centred healthcare around the worldPromoting patient-centred healthcare around the world

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Nigeria [Continued]

67%

70%

82%

80%

71%

70%

58%

0% 20% 40% 60% 80% 100%

Enlisting leading experts on health care to develop new programs and policies for governments to follow to improve the quality of health care across all countries

Introducing a computerized central health information system with appropriate safeguards so that doctors, hospitals and heath care providers have access to a patient’s medical history, to provide vital information in case of an emergency or help prevent the prescription of medicines that might have harmful side effects

Reducing paperwork for physicians so that they can spend more time with patients

Enabling patient-centered decision-making by providing both a platform for input and voting rights to relevant patient representatives in your community

Ensuring that patients have access to the treatment that they and their doctors believe is best for them, including the newest medicines, medical devices and procedures

Allowing patient-centered decision-making by giving relevant patient representatives input and voting rights on cost-containment issues like health technology assessment and the substitution of similar medicines in place of medicines specifically prescribed by your physician

Q5. How would you rate the importance of each of the following health care proposals or issues to you personally, on a scale from 0-10, with l0 meaning that it’s very important to you personally, and 0 meaning not at all important?

% Top 4 Box

[7, 8, 9,10 on 0-10 scale]

In order to ensure access to new medicines for all people, increasing the co-payment for patients who can afford it

46

Promoting patient-centred healthcare around the world

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International

Patients for Patient Safety - WHO World Alliance for Patient

Safety

• Ensuring patient involvement in patient safety initiatives

• Regional and National Workshops and resources

• Over 100 patient advocates trained worldwide

National

• Patients Rights Law 2004, Cyprus

• Patient Information and Empowerment, Uganda

• Family Health Teams, Ontario, Canada

Promoting patient-centred healthcare around the world

Patient-centred healthcare and patient engagement in practice

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Promoting patient-centred healthcare around the world

Conclusions

• The strain on healthcare systems is a massive global problem

• The best way to achieve patient-centred healthcare is with an

approach based on strong values of respect, partnership and equity –

no patient-centred healthcare without cooperation of all stakeholders

• Meaningful patient engagement must be central to efforts to refocus

health systems on people and patients

• Together we can… working together we have the potential for

positive change for the benefits of patients around the world

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Promoting patient-centred healthcare around the worldPromoting patient-centred healthcare around the world

 

What difference would patient-centred healthcare make to the patients I work with?• Access

– Patients have access to healthcare services warranted by their conditions. Access to safe, quality and appropriate services, treatment, preventive care and health promotion activities.

• Information– Patients receive accurate, relevant and comprehensive information to

enable them to make informed decisions about healthcare treatment and living with their condition.

• Involvement– Patients and patients’ organizations would share the responsibility of

healthcare policy-making through meaningful and supported engagement in all levels and at all points of decision-making, to ensure that they are designed with the patient at the centre.

• Safety– Healthcare would be safe and the current threats to patient safety such

as: the cleanliness of hospitals, the risk of receiving counterfeit or substandard medicines or being harmed by care would be reduced. 

Page 26: Promoting patient-centred healthcare around the world IAPO, CHAIN, UNHCO and JFSCU are pleased to welcome you to a workshop on: Patient-Centred Healthcare:

Promoting patient-centred healthcare around the world

Questions for group work

Working in your small groups please take it in turns to talk about an example from your experience that relates to the issue in the corner that you are in. Please use the questions listed below to guide your discussion. We will let you know when it is time to move on to the nextissue.

1. Give an example of a time when this issue affected the patients you work with?

2. How have you addressed this issue?

Page 27: Promoting patient-centred healthcare around the world IAPO, CHAIN, UNHCO and JFSCU are pleased to welcome you to a workshop on: Patient-Centred Healthcare:

Promoting patient-centred healthcare around the world

Workshop Overview - Afternoon

13.30-13.50 What difference would Patient-Centred

Healthcare make to the patients I work with?

Feedback session

13.50-14.15 Collaborating for positive change: Case Study

Robinah Kaitiritimba

14.15-15.30 Collaborating to advocate(Durhane Wong-Rieger – IAPO Board Member and Ella Fearon-Low)

15.30-15.40 Working with IAPO towards Patient-Centred

Healthcare(Myrl Weinberg and Esther Thompson – Membership and Events

Coordinator, IAPO)

15.40-16.00 Taking our messages forward(Jo Groves and Jeremiah Mwangi - Senior Policy Officer, IAPO)

16.00 Workshop End

Page 28: Promoting patient-centred healthcare around the world IAPO, CHAIN, UNHCO and JFSCU are pleased to welcome you to a workshop on: Patient-Centred Healthcare:

Promoting patient-centred healthcare around the world

Feedback session: What difference would Patient-

Centred Healthcare make to the patients I work with?

1. Give an example of a time when this issue affected the patients you work with?

2. How have you addressed this issue?

Page 29: Promoting patient-centred healthcare around the world IAPO, CHAIN, UNHCO and JFSCU are pleased to welcome you to a workshop on: Patient-Centred Healthcare:

Promoting patient-centred healthcare around the world

IAPO Workshop on Patient-Centred Healthcare3 November 2008Kampala, Uganda

Getting your message across – collaborating to advocate

Durhane Wong-RiegerChair, Consumer Advocare Network & IAPO Board Member

Page 30: Promoting patient-centred healthcare around the world IAPO, CHAIN, UNHCO and JFSCU are pleased to welcome you to a workshop on: Patient-Centred Healthcare:

Promoting patient-centred healthcare around the world

Session Outline

• Advocacy in Action: An example

• Advocacy Workshop – Group work

• Defining your message –

• Defining your stakeholders

• Defining what we want to achieve

• What advocacy strategies can I employ to achieve my

outcomes

• Feedback from group work – Are there any key messages

we want to take to the IAPO seminar

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Promoting patient-centred healthcare around the world

SMALL GROUP: BIG PROBLEM

• Problem: No funding for rare disorder

• Canadian Environment

• Drugs funded but not for all conditions

• Rare diseases = Very expensive drugs

• Fabry’s: only 300 patients in Canada

• Government doesn’t pay attention

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Promoting patient-centred healthcare around the world

ADVOCATING for Fabry’s in Canada (1)

• Raised Awareness through Personal Stories

• Patient approaches Opposition Health Critic

• Personal stories profiled in media

• Group Activism

• National Patient group

• National media

Page 33: Promoting patient-centred healthcare around the world IAPO, CHAIN, UNHCO and JFSCU are pleased to welcome you to a workshop on: Patient-Centred Healthcare:

• Press conference, demonstration lead to opportunity to present case to Common Drug Review (cost-effectiveness body)

• Press conference leads to meeting with Health Minister

• Support from Medical Professional Groups, Ethics, Drug Conferences

Case presented to Decision Makers

Promoting patient-centred healthcare around the world

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Promoting patient-centred healthcare around the world

ADVOCATING for Fabry’s in Canada

• Encouraged Individual (Radical) Activism

• Patients refused to leave hospital without treatment; law suite

• Public Campaign: 1200 letters in 2 weeks

• TV, radio, newspapers

• Demonstration staged at Health Ministers Annual Conference

Page 35: Promoting patient-centred healthcare around the world IAPO, CHAIN, UNHCO and JFSCU are pleased to welcome you to a workshop on: Patient-Centred Healthcare:

ADVOCATING for Fabry’s in Canada

• Meetings with politicians and decision makers

• Numerous meetings with Health Ministers and Drug Plan advisors

• Pressure made this key issue at Health Ministers Annual Conference

• Result in promise of funding through “research protocol”

Promoting patient-centred healthcare around the world

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Promoting patient-centred healthcare around the world

ADVOCATING for Fabry’s Treatment

• Started with Individual Stories

• Company agrees to compassionate access for individual patients

• Individual families approach their parliamentary representatives

• Opposition Health Critic becomes champion and continuously raises issue in legislature

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ADVOCATING for Fabry’s in Canada

• Media becomes engaged

• On own and with PR firm, generate press releases and stories

• Local and national papers pick up stories about impact on patients, family

• Selected journalists become champions; create newspaper series on orphan diseases, including Fabry’s, and their treatment.

Promoting patient-centred healthcare around the world

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Promoting patient-centred healthcare around the world

Summary of Fabry Strategies and Tactics

• Strategy: Generate widespread support for issue and credibility

• Strategy: Make issue real; put personal face on it

• Tactic: Take individual stories public

• Tactic: Engage support of significant media and decision makers

• Tactic: Engage support from similar and diverse others

• Tactic: Demonstrate widespread impact and public support

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Promoting patient-centred healthcare around the world

Summary of Fabry Strategies and Tactics

• Strategy: Engage “insiders” who influence or make decision

– Tactic: Leverage connections to engage help of political aids

– Tactic: Take issue to committees, hearings, parliamentary sessions

– Tactic: Engage opposition parties to advocate internally

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Promoting patient-centred healthcare around the world

Summary of Fabry Strategies and Tactics

• Strategy: Engage “third-party” experts to support issue

• Tactic: Organize forums or conferences to discuss issue

• Tactic: Engage medical experts, ethicists, academics to support

• Tactic: Embed issue in broader social or political agenda; “rights”

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Promoting patient-centred healthcare around the world

ADVOCACY MODEL

FEW PUBLICGROUP

Reformer (Member)

TacticsLegitimize Issue

InfluenceEvidence, Trade-offs

Success factorsExpertise, Compromise

Best OutcomesInternal debate, temporary resolution,policy change

Individual (Radical)

TacticsTestimonials, Lawsuit

InfluenceSympathy, Guilt

Success factorsPersonality, Integrity

Best OutcomesWin Case, Raise awareness

Activist (Group)

TacticsDemonstrations, Class Action

InfluenceConfrontation, Media

Success FactorsPublic support, Credible spokespeople

Best OutcomesSupport for Issue

Broker (Independent)

TacticsPublic debate, negotiate

InfluenceInformed public, expert support

Success factorsDiplomacy, public commitment

Best OutcomesWin-win solution, commitment to change

Leg

itim

acy w

ith

Decis

ion

Makers

Credibility Among Consumers (Public)

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Promoting patient-centred healthcare around the world

ADVOCACY: LESSONS LEARNED

1. Get Their Attention; It’s the Sizzle That Sells2. Make Them Care; Engage Them Emotionally3. An Effective Demonstration Needs Numbers; Make It

Politically Worthwhile to Solve the Issue4. Engage Influential Insiders to Support Issue; Better Yet,

Get a Seat at the Table5. Row Together; Find Common Ground; Watch Out for

“Divide and Conquer”; Keep Everyone Informed and Engaged

6. Let Others (Without Vested Interest) Speak For You; Make Solving the Issue the “Right Thing” to Do

7. Small is Good; Don’t Forget: David Won8. When You Get to the Top, Don’t Forget to Send the

Elevator Back Down

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Promoting patient-centred healthcare around the world

Group Work (2-5 people)

• What are your key messages?

• Define your stakeholders

• Who do you serve?

• Who do you want to influence?

• What do you want to achieve? What are your key

outcomes?

• What advocacy strategies can I employ?

10 minutes per question

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Promoting patient-centred healthcare around the world

Together we can…

Esther Thompson

IAPO Membership & Events Coordinator

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Membership activities

- IAPO works to build the skills and capacity of its members

through sharing resources, specialist toolkits, and twinning.

- IAPO provides a platform for shared advocacy with a strong

patient voice including opportunities for members to participate

in policy activities at national, regional and international levels

Promoting patient-centred healthcare around the world

Advocacy Capacity Building Partnerships

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Global Patients Congress

Member led capacity building sessions

Plenary sessions and workshops bringing

together patients representatives, policy

makers, health professionals, researchers

and industry

3rd Global Patients Congress, organized

by patients around the world, held in

Budapest Feb 2008-

www.patientsorganizations.org/congress

Promoting patient-centred healthcare around the world

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Promoting patient-centred healthcare around the world

Participation in healthcare policy making at an international level

IAPO Meeting on Patient-Centred Healthcare

30 March 2007 – UN New York, USA

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Exchanging ideas and sharing resources

IAPO Twinning Service A framework for two organizations to work

together to share expertise for their mutual benefit

•The Patients' Exchange Resource Shares Covers eight main topic areas of relevance to patients' organizations worldwide:

Advocacy, Basics, Collaboration, Communications, Fundraising, Patient Services,

People and Policy Formulation.

Promoting patient-centred healthcare around the world

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In-depth briefing papers, policy statements and toolkits

•Briefing Papers & policy

statements

•Patient Safety Toolkit

to be launched 3

November 2008, Uganda

Promoting patient-centred healthcare around the world

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Promoting patient-centred healthcare around the world

Some conclusions

• We share common issues and concerns nationally, regionally and

globally

• As groups representing patients, we all strongly believe that

meaningful patient engagement must be central to efforts to improve

healthcare and that we, as patient representatives have a valuable

contribution to make

• Together we can – We hope you will join IAPO’s global patients’

movement so we can do this together. IAPO can provide support for

your work and ensure patients in Africa are represented in global

healthcare policy.

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Promoting patient-centred healthcare around the world

Taking our work forward

•IAPO can facilitate networking and exchange between

patient groups in Africa

• IAPO will produce a report on this workshop and seminar,

which can be used to inform our work but also to advocate for

patient-centred healthcare

• What messages do we want to take forward to the mutli-

stakeholder seminar? (Access, Information, Safety,

Involvement)

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Promoting patient-centred healthcare around the world

Taking our work forward

• What messages do we want to take forward to the mutli-

stakeholder seminar?

• Access

• Involvement

• Safety

• Information

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Contact us

Please visit our website to find out more: www.patientsorganizations.org/membership

International Alliance of Patients’ Organizations703 The Chandlery50 Westminster Bridge RoadLondon SE1 7QYUnited Kingdom

Tel: +44 20 7721 7508Fax: +44 20 7721 7596Email: [email protected]: www.patientsorganizations.org

Promoting patient-centred healthcare around the world