promoting patient-centred healthcare around the world iapo, afa, concebir, esperantra and fipan are...

Promoting patient-centred healthcare around the world

IAPO, AFA, Concebir, Esperantra and fipan are

pleased to welcome you to a workshop on:

Patient-Centred Healthcare

13 - 14 October 2009Buenos Aires, Argentina


Welcome from IAPO and our Regional

Supporting Organizations

• Hussain Jafri, IAPO

• Estela Chardon, Concebir

• Blanca Mesistrano, Asociación Fibro America

• Eva Maria Ruiz de Castilla, Esperantra

• María Cristina Jung , Asociación Argentina de Lucha

contra la Enfermedad Fibroquística del Páncreas


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

Supporting organizations:

Workshop sponsors:

• Concebir • Esperantra • Asociacion Fibro America • the Argentine Cystic Fibrosis Association


Overview of the regional variances in

healthcare access and delivery across

Latin America

Merula Steagall, Associação Brasileira de Linfoma e Leucemia, ABRALE IAPO Workshop13-14 October 2009Buenos Aires, Argentina

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

Aims of the workshopThe workshop will provide the opportunity for you, as participants, to:

1.Develop your understanding of the issues faced by patients’

organizations in other countries and disease areas;

2.Build your networks with other patients’ organizations across Latin

America and globally;

3.Understand the work of IAPO, and how the concept of patient-centred

healthcare helps us to connect local health issues on the global level;

4.Increase your understanding of how different approaches to decision-

making in healthcare affect access to healthcare within Latin America,

and can be influenced by patients’ organizations and;

5.Develop your approach to advocacy, in particular identifying new

partnerships or models for advocacy.


Day One

Session 1 – Tuesday morningExploring patient-centred healthcare – locally and globally

09.30-13.00 Welcome and introductionsOverview of healthcare in the regionGroup work on key healthcare issuesIntroduction to IAPO and patient-centred

healthcare

13.00-14.15 Lunch

Session 2 – Tuesday afternoonHow are decisions made on what healthcare services and treatments are available?

14.15-17.30 Presentations, case studies and group work on different approaches to healthcare decision-making

17.30 End of day one


Day Two

Session 3 – Wednesday morning

Principles of, and approaches to, patient engagement and advocacy

09.30-13.00 Presentations, case studies and group work on

collaborative approaches to advocacy and

partnerships

13.00 Lunch

Multi-stakeholder Seminar and ReceptionWednesday afternoon

15.00-18.00 Seminar on Improving Access to Healthcare through Patient Involvement

18.30 Reception


Rules of Engagement and Respect

1. Listen when others are talking

- Everyone is an expert about their own experience and deserves respect

2. It is OK to disagree

- Our goal is to hear and learn from divergent perspectives

3. Do not be afraid to respectfully challenge one another by

asking questions

- But it is not OK to personally attack a person or organization

- Ask yourself how would I want to be treated by someone who disagrees with me?


Rules of Engagement and Respect

4. Keep to your Agreements

- Be on time and help the group stay on schedule

5. Keep confidences

- Our objective is to grow partnerships based on trust

6. Participate to your fullest ability

- Get the most out of the workshop by contributing as much as you can in all the sessions

And finally – ENJOY YOURSELF!


Introductions

Getting to know each other

90 Seconds per person – beat the bell!

• Name

• Organization

• Country

• What does your group do for patients?


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.


Questions for group work:

How do these healthcare policy issues relate to your

work, and affect the patients you 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?


Coffee Break



How do these healthcare policy issues relate to your

work, and affect the patients you 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?


An Introduction to IAPO and

Patient-Centred Healthcare

Hussain Jafri, Chair, IAPORegina Namata-Kamoga, Board Member, IAPOIAPO Workshop13-14 October 2009Buenos Aires, Argentina


About IAPO

• 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


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


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

http://www.patientsorganizations.org/involvement

http://www.patientsorganizations.org/involvement

http://www.patientsorganizations.org/healthliteracy

http://www.patientsorganizations.org/declaration

http://www.patientsorganizations.org/declaration

International

•Ensuring patient involvement in global policy initiatives and activities

•Participating in regional and global consultations

•Meetings and workshops for multi-stakeholder decision-makers

Regional and National

•Regional Workshops (Africa – 2008, Latin America - 2009)

•Member consultations on policy issues (Patient Safety – 2007,

Intellectual Property – 2008, Patient Information – 2009)

•Support for groups to participate in World Health Organization activities

including attendance at the World Health Assembly


Making Patient-Centred Healthcare a reality


African Regional Workshop

1. Identifying critical issues for African Patient groups

2. Working together across boundaries

3. Building cross-sector alliances

“I plan to mount a systematic patient/citizen advocacy campaign on the participation and involvement ofpatients in the processes towards developing National Health Policies.”(Workshop delegate)


African Regional WorkshopNext Steps – Meeting Outcomes

• Use of the principles of patient-centred healthcare to guide people’s work in a more significant way

• Workshops with colleagues and others to share learning

• Establishment of new local, national or pan-African networks of patient organizations

• Collaborative working with new partners


Any questions

on IAPO and

Patient-Centred Healthcare?

Hussain Jafri, Chair, IAPOJo Groves, CEO, IAPORegina Namata-Kamoga, Board Member, IAPOIAPO Workshop13-14 October 2009Buenos Aires, Argentina


Lunch

Please be back here by 14.10

Thank you

IAPO Workshop13-14 October 2009Buenos Aires, Argentina


Session 2

How are decisions made on what healthcare services and

treatments are available?



Day One

Session 2 – Tuesday afternoonHow are decisions made on what healthcare services and treatments are available?

14.15-17.30 Presentations, case studies and group work on different approaches to healthcare decision-making

17.30 End of day one


Regional approaches to

healthcare decision-making

Durhane Wong-Rieger, IAPO Board MemberEva-Maria Ruiz de Castilla, Esperantra]IAPO Workshop13-14 October 2009Buenos Aires, Argentina


Regional approaches to

healthcare decision-making

Q&A



Break


Thank you


What is the reality for patients’ organizations working within

these approaches to healthcare decision-making?



Fibroamerica Case Study

Question and Answer



Group work – Case Study 1:

Identifying how we can each learn from the work of

Fibroamerica




What most resonated with me from Blanca’s presentation?

Could I use any of the approaches adopted by Fibroamerica?

What one change could I make to my work based on this presentation?



What have we learnt?

What’s next?



A Question for Discussion:

What is the single biggest challenge for

your organization in supporting better

access to healthcare for patients?



Close of Day 1

IAPO Patients Workshop

Thank you



IAPO, AFA, Concebir, Esperantra and fipan are

pleased to welcome you to a workshop on:

Patient-Centred Healthcare:

13 - 14 October 2009Buenos Aires, Argentina


Day Two

Session 3 – Wednesday morning

Principles of, and approaches to, patient engagement and advocacy

09.30-13.00 Presentations, case studies and group work on

collaborative approaches to advocacy and

partnerships

13.00 Lunch

Multi-stakeholder Seminar and ReceptionWednesday afternoon

15.00-18.00 Seminar on Improving Access to Healthcare through Patient Involvement

18.30 Reception


Introduction to effective advocacy for patients organizations

Why Advocacy?Virginia LaddPresident and Executive Director, American Autoimmune and Related Disorders Association & IAPO Board Member


Empowering Patients Through Advocacy

The role of advocacy is becoming increasingly important to the welfare of

patients because of the dramatic changes in the financing and delivery of

health care and how research funding is allocated.

Organizations and agencies representing patients must step up to this challenge by:

• Making advocacy a priority program area

• Taking a strong advocacy stanceCollaboration in this area is essential

More than ever, patients need independent advocates to help protect their interests.

The four principal targets of patient advocacy organizations are:

Individual patient or “case” advocacy

Health care payers

Health care providers

Health Policy Makers

Today, in the face of new economic relationships in health care, physicians and

other providers are confronted with potential conflict of interest with regard to patients.

Of great importance today is the role that voluntary patient organizations play.

The principles of advocacy and collaboration that organizations use can be applied locally, nationally and internationally within different

systems and different sized organizations.

We must empower patients to become their own “BEST ADVOCATE.”

Patients need to be empowered to be their own best advocate in order to face:

• financial pressures

• differences in medical opinions

• Healthcare rationing

• Patient safety

Patients need to be empowered to be their own best advocate in order to face:

• advancements in biotechnology

• explosion of information via the Internet

• having a voice in the national research agenda

Patient groups are in a position to play this role.

Patient organizations increase their effectiveness by working in coalitions:

• Voluntary health organizations and non-governmental coalitions

• political or policy coalitions

The critical factor to involvement in coalitions is for organizations to realize that each group has a larger societal or “corporate” responsibility that extends

beyond their own mission.

Groups that represent patients cannot do it alone.

Successful Areas of Collaboration

• NIH Autoimmune Disease Coordinating Committee.

• National Autoimmune Research Plan.• National Health Council –Healthcare

Reform Campaign.

Current Advocacy Issues

• Increasing NIH research funding• Full funding for the NIH Autoimmune Diseases

Research Plan• Medicare Prescription Drug Coverage• Stem Cell Research• Therapeutic cloning and legislation• Patient’s rights

A Case for Collaboration

AARDA views collaboration as a resource.

Strategic Planning• Summit Committee

– AARDA leadership volunteers and senior staff– Corporate representatives– Researchers– Professional organizations– Other patient groups

• Committee purpose is to identify collaborative opportunities.

Collaborative effort must fit into AARDA’s overall strategic plan.

Organizations

• Other Autoimmune Groups

• National health Council

• Society for Women’s Health

• Clinical Immunology Society•First international scientific meeting on autoimmunity

• Federation of Clinical Immunology Societies•Scientific and lay meetings

• American College of Rheumatology•Scientific workshop

Organizations (continued)

Institutions• National Institutes of Health

– Co-sponsored eight scientific meetings

• Johns Hopkins University– Sponsored nine Autoimmune Days that brought

together all different disciplines that might be involved in autoimmune disease

– AARDA was the initial funder of the Autoimmune Research Center at Johns Hopkins.

Collaborative Projects• Scientific Meetings

• Public Forums

• Research Grants

• Advocacy –Policy Issues

• (Fundraising????)

National Coalition of Autoimmune Patient Groups

Mission: To consolidate the voice of autoimmune disease patients and to

promote increased education, awareness, and research into all aspects

of autoimmune diseases through a collaborative approach.

– AARDA provides all inquirers with our information on their disease and refers them to appropriate groups

– No local chapters– Encourages all magazine stories to include

a side bar listing other groups– Refers donors interested in funding single

disease research to appropriate groups

Building Trust

Collaborative Advocacy• Members agreed to refer to their singular diseases as

autoimmune in order to reach the public with a more unified voice.

• Successful in getting report language that called for the formation of an NIH Autoimmune Diseases Coordinating Committee which involves all of the NIH institutes, the FDA, and the CDC.

• Initial funding of 150 million over five years for the committee.

Collaborative Advocacy

• Successfully advocated for Congress to request a report on what was the exact status of autoimmune research at the NIH.

• Successfully advocated for language in the Children's Health Act which required the NIH committee to produce a national research plan. The plan is now completed and was recently submitted to Congress.

Family Foundation approached AARDA to fund one of our projects.• Several meetings, written agreement• AARDA invested resources and

spokesperson in mutual fund raising event.

• Following event, family decides to fund another project

• AARDA pulls out of the relationship.

When Collaboration Fails

• What we learned from the experience– Make sure all involved understand how a

non -profit works.– Make sure the involved parties have the

same ethics.– Don’t let the money drive the decisions.

Thank you


Mapping the issues:


What is the single biggest challenge for your

organization in supporting better access to

healthcare for patients?


Mapping the issues:

Exploring the underlying issues in accessing healthcare in more detail



Break


Thank you



KP TsangBoard Member, IAPO

Sharing the burden, maximising impact: exploring the benefits of working in partnerships and networks to affect change

IAPO’s approach to partnerships and networks

IAPO’s approach to partnerships


• Cross-sector alliances are crucial to improving healthcare for patients. It is only

through effective engagement by all stakeholders with patient groups that our

work and the experiences of patients and patients’ organizations can be

understood and acted upon.

• The aim is to ensure the patients’ voice is heard where healthcare decisions are

made and to maximize the patients’ influence at all levels of healthcare.

No patient-centred healthcare without co-operation

Stakeholders and partnerships


Who are the stakeholders that we need to work with to develop and

implement healthcare policies that address patients’ needs?

- Patients’ organizations

- Governments/policy-makers

- Doctors, nurses, pharmacists and other healthcare

professionals

- Healthcare industry and business corporations

- Other voluntary agencies and foundations

- World Health Organization (WHO)

Where does IAPO partner to influence policy?

– Official Relations Status with WHO (since 2007)

– Participation at the WHO World Health Assembly

– Partnerships with international health professions association (World Medical Association,

International Council of Nurses and International Pharmaceutical Federation (FIP))

– Working relationships with international bodies such as:

• the International Medical Products Anti-counterfeiting Taskforce (since 2006)

• FIP’s Working Group on Patients as Partners (since 2009)

Combining international, regional and national level advocacy

Patients for Patient Safety (strand of the WHO Patient Safety Programme)

• Ensuring and enabling patient involvement in strands of the Alliance at a global level

• Ensuring and enabling patient involvement at a regional and national level


IAPO Partnerships‘…meaningful and supported engagement in all levels (of healthcare policy)

and at all points of decision-making…’ (from IAPO Declaration)

Case study on partnerships to work towards patient-centred healthcare in Hong Kong


The Alliance for Patients Mutual Help Organizations (APMHO) which was founded in 1993

has 40 patients organizations crossing a variety of diseases.

It has been working to promote Patient-Centered Healthcare since attending the Global

Patients Congress in 2006.

It advocates to the government and major public healthcare provider – Hospital Authority to

accept patient’s delegates to participate at various levels of the healthcare system.

As a result, patient delegates are sitting in advisory committees of the government, Board

of the Hospital Authority, public Complain Committee of HA, Steering Committee of a

number of hospitals, etc.

Outcomes: Patients’ advice has been taken in decision making on a stop smoking policy,

provision of vaccination to children, regulations on pharmaceutical products, etc.


María Isabel RolandoPresidentConcebir

Sharing the burden, maximising impact: exploring the benefits of working in partnerships and networks to affect change

A Case Study from Concebir


Sharing the burden, maximising impact: exploring the benefits of working in partnerships and networks to effect change

Q&A and Discussion


Group Work – Part II

Developing Advocacy

Approaches to Improve Access



Introduction to the

Multi-Stakeholder Seminar

Jeremiah Mwangi, IAPOBlanca Mesistrano, FibroamericaIAPO Workshop13-14 October 2009Buenos Aires, Argentina


Seminar Agenda 15.30 Patient-Centred Healthcare – Improving Access to Healthcare through Patient Involvement

Introduction to IAPO and Regional Supporting OrganizationsIntroduction to Patient-Centred Healthcare

16.20 Break

16.50 Panel Discussion: How does patient involvement improve access to healthcare in Latin America?

Chair: Durhane Wong-Rieger, Governing Board Member, International

Alliance of Patients’ Organizations

18.00 Seminar close

18.30 Reception


Panel Discussion:

How does patient involvement improve access to

healthcare in Latin America?

Chair: Durhane Wong-Rieger, IAPO

Panellists: Luis Adrian Quiroz Castillo,

Derechohabientes Viviendo con VIH del

IMSS, Mexico

Blanca Mesistrano, Asociación Fibro

America, Argentina

Lic Elena Perich, Federacion Argentina de

Enfermeria

Monica Carles, Representative of Ministry of

Health


Invited Stakeholders

• Representatives from the Ministry of Health

• Representatives from WHO

• Healthcare Professionals

• Nurse’s association

• Doctor’s association

• Pharmacist’s association

• Dentist’s association

• Regulators

• Academics

• Civil Society



What would you like to achieve/ask this afternoon?


IAPO Patient WorkshopWorking Effectively with the WHO

• One day interactive seminar to coincide with the World Health Organization – 62nd World Health Assembly

• 30 Patient Advocates from 17 Countries

• Aim:

• To provide attending patient advocates

with a better understanding of the role

of the WHO in global health policy

Some of the key topics covered in the workshop included: •patient advocacy and the WHO, •counterfeit medicines & patient safety, •chronic conditions and; •health promotion.



Outcomes:• Coordinated eight meetings with IAPO members and their country

delegates.

• IAPO intends to hold this workshop annually as a key part of the IAPO strategic plan

“The patient voice shouldalways be heard as clearly aspossible.” – Ted Karpf,WHO Partnership Office




Participant testimonials


Thank you!

promoting patient-centred healthcare around the world iapo, afa, concebir, esperantra and fipan are...

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healthcare access

healthcare services

healthcare treatment

safety healthcare

patient engagement

healthcare affect access

patient involvement