At the heart of the dialogue Improving the patient - professional interaction in decision making Janneke Elberse Msc, Ma Athena Institute Vrije Universiteit Amsterdam

Introduction  Current situation in the Netherlands –Bottom up –Individual projects –Slowly more involvement government

Patient participation project  Different initiatives have taken place Diabetes Foundation Burn Foundation Asthma Foundation  Identify and prioritize research topics  Partnership is created between different stakeholders  Special attention for care user group  Dialogue meeting

Project Heart Foundation  Partnership  Shared research agenda  Short time span

Project Heart Foundation

Dialogue meeting Presentation Care users’ perspectives Reflection presentation by PO Work session Problem → Research topic Plenary feedback Work session Dialogue research topic list Prioritizing and mutual understanding Reflection presentation by expert Presentation experts’ perspectives Dialogue meeting

 Asymmetrical relation between care users and researchers  Inclusion strategies applied Project Heart Foundation

Outcomes  Clear research topics  Participants very enthusiastic  Mutual respect created but  Researcher based research topics  Inclusion /exclusion care users’ perspectives  Behaviour  Verbal interaction

Identified obstacles  Asymmetrical relation between stakeholder groups leads to exclusion  Lack of sense of urgency  Care users not empowered enough to speak up

Recommendations  How to improve the dialogue between care users and researchers? Decrease asymmetry Increase visibility Empower care users Select care users/ researchers Increase coherency

Conclusion Dialogue was a first step in the right direction! but Improvement is needed!

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