“What Is PER?” Patient Engagement in Research as a Hit

Engaging patients in research conduct and agenda setting is increasingly considered as an ethical imperative, and a way to transcend views of patients as passive subjects by fostering their empowerment. However, patient engagement in research (PER) is still an emerging approach with debated definitional and operational frameworks. This song addresses the sometimes difficult encounter and elusive mutual understanding between researchers and patients. “What is PER?” is an impressionistic illustration of the challenges and issues that

Résumé de l'article Impliquer les patients dans la conduite de la recherche et dans l'établissement des agendas de recherche est de plus en plus considéré comme un impératif éthique de même qu'un moyen de transcender la vision classique des patients en tant que sujets passifs en favorisant leur autonomisation. Cependant, l'engagement des patients en recherche est encore une approche émergente avec des cadres définitionnels et opérationnels débattus. Cette chanson aborde la rencontre parfois difficile et l'insaisissabilité de la compréhension mutuelle entre chercheurs et patients. « What is PER? » est une illustration impressive des défis et enjeux rencontrés dans l'univers de l'engagement du patient en recherche.
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The editors follow the recommendations and procedures outlined in the COPE Code of Conduct and Best Practice Guidelines for Journal Editors. Specifically, the editors will work to ensure the highest ethical standards of publication, including: the identification and management of conflicts of interest (for editors and for authors), the fair evaluation of manuscripts, and the publication of manuscripts that meet the journal's standards of excellence.

Résumé
Abstract Impliquer les patients dans la conduite de la recherche et dans l'établissement des agendas de recherche est de plus en plus considéré comme un impératif éthique de même qu'un moyen de transcender la vision classique des patients en tant que sujets passifs en favorisant leur autonomisation. Cependant, l'engagement des patients en recherche est encore une approche émergente avec des cadres définitionnels et opérationnels débattus. Cette chanson aborde la rencontre parfois difficile et l'insaisissabilité de la compréhension mutuelle entre chercheurs et patients. « What is PER? » est une illustration impressive des défis et enjeux rencontrés dans l'univers de l'engagement du patient en recherche.
Engaging patients in research conduct and agenda setting is increasingly considered as an ethical imperative, and a way to transcend views of patients as passive subjects by fostering their empowerment. However, patient engagement in research (PER) is still an emerging approach with debated definitional and operational frameworks. This song addresses the sometimes difficult encounter and elusive mutual understanding between researchers and patients. "What is PER?" is an impressionistic illustration of the challenges and issues that can be found in the universe of patient engagement in research.

Afterword
Patient engagement in research (PER) is increasingly recognized and considered as an ethical imperative, based on the predication that research must serve those on whom and for whom it is conducted [1]. Seeking to transcend a paternalistic view of the involvement of patients in research (as objects and subjects of research), PER's objective is to value their knowledge and their experiences as being able to guide and orient research conduct and priority setting, so that it is more relevant and of greater impact [2]. Historically, researcher-patient relationships were not easily qualified as being founded on comradeship, equality and inclusivity [3]. Therefore, such a new approach to health research is laudable and likely necessary, but not without difficulty. PER requires, to some extent, the transformation of relationships between the various parties involved. An important change of culture and mentalities is needed to allow patients to join research teams and to be considered as important and valued partners [4].

"What is PER?"
This songpastiche of the highly successful hit "What Is Love" performed by Haddaway in the 90s' 1addresses themes related to PER operationalization as well as the obstacles and pitfalls in rebalancing the researcher-patient relationship; one of its critical obstacles being the meaningful and effective involvement of patients in research. "What Is PER" returns to the root of this concept and questions its foundations and implications based on both patients' and researchers' perspectives. The song focuses on the challenges to reach a genuine, mutually beneficial researcher-patient relationship. But, achieving mutual understanding is not easy. On the one hand, research carries its share of imperatives and constraints (e.g., never-ending quest for funds and publications) that can easily escape patients. On the other hand, patients' realities and experiences with their disease, the health care system and research endeavour may sometimes seem trivial or biased (uncontrolled experiences vs. controlled experiments) to researchers. Too often, patients and researchers live in parallel realities. This is evoked by the repetition of the same questions and incessant requests to get an explanation of what PER really is and what actually goes wrong. Both are seeking to have a common understanding of what unites them, of the terms of their relationship.
PER, as a (new) research approach [5], seeks to intermingle patients and researchers, particularly by valuing patients as partners, and their experiential knowledge as complementary to scholarly knowledge. The choir of patients stress that they want to contribute to research and share their perspective that forms a "communal body of knowledge exceed[ing] the boundaries of individual experiences" [6]. However, in the song, researchers are only involving them superficiallyminutes before submitting a grant applicationleaving patients dissatisfied with their involvement: "I don't know why you're not fair. I give you my insights, but you don't bear". Researchers also are dissatisfied with and puzzled by funder expectations regarding their involvement of patient partners in research. In essence, "What is PER" focuses on miscommunication and Augean expectations between patients, researchers and funders. The song evokes a need for a frank and open dialogue within the research community, including patients, researchers, funders and so on. As some funding opportunities (and increasingly scientific journals 2 ) are now requiring the involvement of patients, this nudges researchers to engage in PER approaches. The instrumentalization of patients to gain access to these funds is real and represents a pressing ethical issue [1], yet even well-intentioned researchers are facing difficulties in authentically conducting PER. The song conveys that researchers' and patients' narratives are still tangential, highlighting that these communities have not yet established the necessary dialogue [13]. The terms of their relationship (or of their affair) are not yet established, nor has agreement been reached on what they should expect from each other; this is potentially one of the most pressing operational dimensions of PER.

Towards answering the question "What is PER?"
Much remains to be done to address the issues of communication and genuine and mutually beneficial relationships. When researchers and patients ask each other and research funding agencies what PER entails, the answers they receivethe back vocals in the songare heartfelt but remain elusive. It is as if the words are lacking for them to truly understand each other at this early stage of their new partnership. Making them still wonder what PER is.