Position of KCE on patient involvement in health care policy research
KCE Reports 320 (2019)
Around the world, the tendency is to involve patients in scientific research projects aimed at providing guidance to healthcare policy-makers. Patients, who are faced with the physical, emotional and financial consequences of their illness, have specific knowledge which researchers do not have (or which are not described in the scientific literature). This is what is referred to as “expertise by experience”. It is therefore logical to take their point of view into account. In Belgium, KCE is the first public institution to examine this issue.
Our researchers have studied the scientific literature and consulted the opinions of Belgian experts and institutions similar to KCE in other countries, taking into account the ethical and philosophical aspects associated with patient involvement. We have also discussed and researched the matter internally, questioning our own culture, opinions and experiences. As a result of this in-depth exercise, we have put forward 18 positions on the subject.
Investing in time and in additional resources will be the main challenge for the researchers. They will also have to look closely at the emotional burden that this involvement will represent for patients and researchers, and at the possible conflicts of interest, just as they do for the other stakeholders. The next step will be to develop a methodological guide offering practical recommendations.
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