Transcript View PDF - 5th Utrecht Stem Cell Conference

Patient participation
An addition to research
Kanjerketting
Tikkie Ring
- Hart&Vaatgroep College van
ervaringsdeskundigen
-Heart Foundation  Committee
Societal Quality
Participation ladder
From research subject to driving force
Patient as research subject
Patient as research subject
Patient as informant
Patient as informant
- Training Jacob Jongbloed Society 2013,
2016
- Presentation Cardiovascular Treaty of
Utrecht 2013
- Lecture University of Wageningen 2014,
2015, 2016
Patient as advisor
Patient as advisor
- Research proposals (in various stages);
- Patient letters;
-…..
Patient as reviewer
Patient as reviewer
- Committe Societal Quality
- British Medical journal;
-…….
Patient as research partner
Patient as research partner
- VU Medical centre
- UMCU
- clinical research?
Patient as initiator of research
Patient as initiator
- Research agenda of Dutch Heart Foundation
What’s in it for you?
???
What’s in it for you
-Additional view on prioirities;
-Additional view on outcome measures;
-Suggestions for recruiting respondents;
-Help focus on group of patients;
-Increase legitimacy of research and public support;
-Help with implementation of study results.
What’s in it for the patients?
???
What’s in it for the patients?
- Make a contribution for other patients,
patients of the future;
- Do something in return;
- Interesting;
- Way to spend their time;
-…
Criteria for patients
-Selection procedure
-Training
-Affinity with research
-Reasonable knowledge of English and cardiovascular
terminology
-Emotional distance from illness
-Patience
Research proposal from a patient’s
point a view
-Relevant;
-Expected outcome;
-Work in practice, feasible;
-Next step;
-Knowledge transfer;
-Patient participation;
-…
What’s in it for me?
Patient of the future??
Questions??
Erika Buitenhuis & Marianne Salm