The road that leads to the involvement of patients in research, undertaken in our country quite recently, is still long and for this reason the suggestions provided by those who have been practicing it for the longest time are precious. The opportunity to reflect comes from the intervention of some Canadian patients in the scientific journal Research Involvement and EngagementThat lists how much could go wrong in the patient engagement process. In particular, the issues are summarized in four points: inviting the patient to the working table as a mere practical adaptation to the requests of health agencies; harbor more or less conscious prejudices towards patients; not providing them with support (including logistical support) to encourage their participation; not recognizing the vulnerability of patients, whose contribution is at the same time often considered “subjective”, “emotional”, “biased”, not representative or personal. The article concludes with a call for reflection to all the figures involved.
Accepting the invitation are Paola Zaratin, director of scientific research of the Italian Multiple Sclerosis Foundation (Fism), Usman Khan of the Institute of Health Policies of Leuven and Guendalina Graffigna, director of the EngageMinds Research Center HUB of the Catholic University in Milan. In a comment to the Canadian work, published in the same journal, address what they consider one of the factors at the origin of the failure to optimize patients’ contribution, the very concept of the “expert patient”. The three write: «We support the importance of ensuring the broad inclusion of all the different types of “experiential knowledge” that patients can bring and we highlight the risk of a poorly representative approach if guided only to select patients with knowledge and skills relating to the mechanisms of scientific research».
Towards broader involvement
Zaratin, Khan and Graffigna state that when only “expert patients” are involved, representativeness is at risk, since this participation does not make it scientifically relevant and does not include all the different experiences of patients. Precisely for this reason, we need a new science of involvement, aimed not only at patients, but at all citizens. This new science would address the challenges and opportunities of patient-reported health impact, digital medicine and artificial intelligence.
We need authentic listening
For this, however, it would be necessary to implement new research management systems. «Paradoxically today we risk generating a worrying inequity in the forms of patient participation in research which in turn can introduce dangerous biases into the scientific process” considers Guendalina Graffigna. «To make the objective of patient engagement in research a reality, we must first of all deeply question the classic practices of scientific research in order to guarantee authentic forms of listening and involvement of people’s secular knowledge, in all its different forms. New recruitment and involvement tools, increasingly inclusive and sensitive, must be tested. I think it is necessary to train researchers and technicians in an authentic dialogue with the experiential knowledge of patients, before (and in addition to) training patients in technical knowledge to make them able to dialogue with researchers.”
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