Engaging To Fight Chronic Disease

Michaela Benedigov PFCD

Need to have patients on board

Many countries share the legacy of keeping quiet People are not used to dialogue re health, healthcare The case of patient organizations: Lack of skills leads to lack of leverage Reasons: cultural & educational What they say from above (physician, government) is often taken for granted

Even if they want to engage, they dont know how

Why we engage
Our mission: Empower a wide range of stakeholders to take active part in the policy- and decision-making process Provide them a set of means to exercise their leverage, educate them and advance their skills in public affairs Our goal: better healthcare outcomes More accessible healthcare services

State-of-the-art prevention & treatment

More efficient policies

Projects: Hungary
Goal:
Get patient organizations involved in drafting WHOs strategy and action plan for improving access to medicines for neglected diseases in poor & developing countries Influence developments in the WHO to seek a result that is more supportive of innovation

What we did:
Stakeholders mapping & auditing in Czech Republic, Slovakia, Hungary and Poland We invited the most relevant organizations to the satellite symposium held the day prior to IAPOs Global World Congress in Budapest (February 19, 2008) We asked them to sign the patients declaration on innovation and global health

Projects: Hungary
Results:
We identified & invited almost 150 relevant patient organizations in the 4 countries 38 representatives of these organizations attended the symposium in Budapest to have their voice heard and sign patients declaration on innovation and global health

Projects: Czech Republic

Goals:
Help Czech patient organizations get involved in decision-making processes to advocate their rights Educate patient leaders in strategic planning; improve their knowledge of legislation system, public affairs, media relations, communication and presentation skills Improve access to state-of-the-art treatment

What we did:
Stakeholder mapping & audit

Seminar for selected stakeholders

Set of communication trainings for patient leaders

Projects: Czech Republic

Results:
We identified & interviewed almost 50 relevant patient organizations 16 organizations represented by 21 patient activists took part in the seminar in Prague, extremely positive feedback All 21 patient activists got communication trainings in 4 sessions, equally positive feedback

Conclusions
Process of working together creates win-win situations Engagement improves dialogue Dialogue in most cases results to better public policies Partnership between civil society, private sector and public sector usually improves the committment to implement and maintain the programs and policies In healthcare: encourage both behavioral and systemic changes leading to better heathcare outcomes

Thank you!
Michaela Benedigov PFCD