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26/52 A systematic take on Patient Engagement

Outcome of MPNEminiMEET2022, Brussels

The opportunities for patient engagement currently multiply. While in general a desirable evolution, patient engagement opportunities are not created equal but rather vary greatly in a patient's ability to shape outcomes, the amount of time and effort that need to be invested and the level of expertise that is required in order to effect change.

In our work as patient advocates, we have encountered different motivations to seek the engagement of patients. We believe it is necessary to have a clear understanding of the different types of engagement as in our experience, mismatching expectations between those seeking to engage and those who are suppose to engage are a major source of frustration.

From our point of view, valid reasons to seek the involvement of patients (as well as citizens) map and relate as follows:

  1. Outreach and awareness for transparency and accountability towards society

  2. User-testing for product or service development

  3. Citizen Science

  4. Shaping and actively participating in research.

to be continued

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