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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
Promoting patient-centred healthcare around the world
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
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:
• Concebir • Esperantra • Asociacion Fibro America • the Argentine Cystic Fibrosis Association
Promoting patient-centred healthcare around the world
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.
Promoting patient-centred healthcare around the world
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
Promoting patient-centred healthcare around the world
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
Promoting patient-centred healthcare around the worldPromoting patient-centred healthcare around the world
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?
Promoting patient-centred healthcare around the worldPromoting patient-centred healthcare around the world
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!
Promoting patient-centred healthcare around the world
Introductions
Getting to know each other
90 Seconds per person – beat the bell!
• Name
• Organization
• Country
• What does your group do for patients?
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.
Promoting patient-centred healthcare around the world
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?
Promoting patient-centred healthcare around the world
Coffee Break
Promoting patient-centred healthcare around the world
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?
Promoting patient-centred healthcare around the world
An Introduction to IAPO and
Patient-Centred Healthcare
Hussain Jafri, Chair, IAPORegina Namata-Kamoga, Board Member, IAPOIAPO Workshop13-14 October 2009Buenos Aires, Argentina
Promoting patient-centred healthcare around the world
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
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
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
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
Promoting patient-centred healthcare around the world
Making Patient-Centred Healthcare a reality
Promoting patient-centred healthcare around the worldPromoting patient-centred healthcare around the world
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)
Promoting patient-centred healthcare around the worldPromoting patient-centred healthcare around the world
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
Promoting patient-centred healthcare around the world
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
Promoting patient-centred healthcare around the world
Lunch
Please be back here by 14.10
Thank you
IAPO Workshop13-14 October 2009Buenos Aires, Argentina
Promoting patient-centred healthcare around the world
Session 2
How are decisions made on what healthcare services and
treatments are available?
IAPO Workshop13-14 October 2009Buenos Aires, Argentina
Promoting patient-centred healthcare around the world
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
Promoting patient-centred healthcare around the world
Regional approaches to
healthcare decision-making
Durhane Wong-Rieger, IAPO Board MemberEva-Maria Ruiz de Castilla, Esperantra]IAPO Workshop13-14 October 2009Buenos Aires, Argentina
Promoting patient-centred healthcare around the world
Regional approaches to
healthcare decision-making
Q&A
IAPO Workshop13-14 October 2009Buenos Aires, Argentina
Promoting patient-centred healthcare around the world
Break
Please be back here by 15.30
Thank you
Promoting patient-centred healthcare around the world
What is the reality for patients’ organizations working within
these approaches to healthcare decision-making?
IAPO Workshop13-14 October 2009Buenos Aires, Argentina
Promoting patient-centred healthcare around the world
Fibroamerica Case Study
Question and Answer
IAPO Workshop13-14 October 2009Buenos Aires, Argentina
Promoting patient-centred healthcare around the world
Group work – Case Study 1:
Identifying how we can each learn from the work of
Fibroamerica
IAPO Workshop13-14 October 2009Buenos Aires, Argentina
Promoting patient-centred healthcare around the world
Questions for group work:
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?
IAPO Workshop13-14 October 2009Buenos Aires, Argentina
Promoting patient-centred healthcare around the world
What have we learnt?
What’s next?
IAPO Workshop13-14 October 2009Buenos Aires, Argentina
Promoting patient-centred healthcare around the world
A Question for Discussion:
What is the single biggest challenge for
your organization in supporting better
access to healthcare for patients?
IAPO Workshop13-14 October 2009Buenos Aires, Argentina
Promoting patient-centred healthcare around the world
Close of Day 1
IAPO Patients Workshop
Thank you
IAPO Workshop13-14 October 2009Buenos Aires, Argentina
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
Promoting patient-centred healthcare around the world
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
Promoting patient-centred healthcare around the world
Introduction to effective advocacy for patients organizations
Why Advocacy?Virginia LaddPresident and Executive Director, American Autoimmune and Related Disorders Association & IAPO Board Member
IAPO Workshop13-14 October 2009Buenos Aires, Argentina
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
Promoting patient-centred healthcare around the world
Mapping the issues:
IAPO Workshop13-14 October 2009Buenos Aires, Argentina
What is the single biggest challenge for your
organization in supporting better access to
healthcare for patients?
Promoting patient-centred healthcare around the world
Mapping the issues:
Exploring the underlying issues in accessing healthcare in more detail
IAPO Workshop13-14 October 2009Buenos Aires, Argentina
Promoting patient-centred healthcare around the world
Break
Please be back here by 11.25
Thank you
IAPO Workshop13-14 October 2008Buenos Aires, Argentina
Promoting patient-centred healthcare around the world
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
Promoting patient-centred healthcare around the world
• 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
Promoting patient-centred healthcare around the world
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
Promoting patient-centred healthcare around the world
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
Promoting patient-centred healthcare around the world
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.
Promoting patient-centred healthcare around the world
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
Promoting patient-centred healthcare around the world
Sharing the burden, maximising impact: exploring the benefits of working in partnerships and networks to effect change
Q&A and Discussion
Promoting patient-centred healthcare around the world
Group Work – Part II
Developing Advocacy
Approaches to Improve Access
IAPO Workshop13-14 October 2008Buenos Aires, Argentina
Promoting patient-centred healthcare around the world
Introduction to the
Multi-Stakeholder Seminar
Jeremiah Mwangi, IAPOBlanca Mesistrano, FibroamericaIAPO Workshop13-14 October 2009Buenos Aires, Argentina
Promoting patient-centred healthcare around the world
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
Promoting patient-centred healthcare around the world
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
Promoting patient-centred healthcare around the world
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
Promoting patient-centred healthcare around the world
IAPO Workshop13-14 October 2009Buenos Aires, Argentina
What would you like to achieve/ask this afternoon?
Promoting patient-centred healthcare around the worldPromoting patient-centred healthcare around the world
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.
Promoting patient-centred healthcare around the worldPromoting patient-centred healthcare around the world
IAPO Patient WorkshopWorking Effectively with the WHO
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
Promoting patient-centred healthcare around the world
IAPO Workshop13-14 October 2009Buenos Aires, Argentina
IAPO Patient WorkshopWorking Effectively with the WHO
Participant testimonials
Promoting patient-centred healthcare around the world
Thank you!