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

Claudio Del Grande

Geneviève Rouleau

Jean-Christophe Bélisle-Pipon

Canadian Journal of Bioethics

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Canadian Journal of Bioethics
Revue canadienne de bioéthique
“What Is PER?” Patient Engagement in Research as a Hit
Jean-Christophe Bélisle-Pipon, Claudio Del Grande and Geneviève Rouleau
Volume 1, Number 2, 2018
URI: https://id.erudit.org/iderudit/1058274ar
DOI: https://doi.org/10.7202/1058274ar
See table of contents
Publisher(s)
Programmes de bioéthique, École de santé publique de l'Université de
Montréal
ISSN
2561-4665 (digital)
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Cite this document
Bélisle-Pipon, J.-C., Del Grande, C. & Rouleau, G. (2018). “What Is PER?” Patient
Engagement in Research as a Hit. Canadian Journal of Bioethics / Revue
canadienne de bioéthique, 1(2), 59–62. https://doi.org/10.7202/1058274ar
Article abstract
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.
 
J-C Bélisle-Pipon, C Del Grande, G Rouleau. Can J Bioeth / Rev Can Bioeth. 2018, 1(2):59-62 
Canadian Journal of Bioethics 
Revue canadienne de bioéthique 
 
 
Correspondance / Correspondence: Jean-Christophe Bélisle-Pipon, jbelislepipon@law.harvard.edu  
ISSN 2561-4665 
 
2018 J-C Bélisle-Pipon, C Del Grande, G Rouleau. Creative Commons Attribution 4.0 International License 
 
Les éditeurs suivront les recommandations et les procédures décrites dans le Code 
of Conduct and Best Practice Guidelines for Journal Editors de COPE. Plus 
précisément, ils travaillent pour s’assurer des plus hautes normes éthiques de la 
publication, y compris l’identification et la gestion des conflits d’intérêts (pour les 
éditeurs et pour les auteurs), la juste évaluation des manuscrits et la publication de 
manuscrits qui répondent aux normes d’excellence de la revue. 
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. 
 
ART, CULTURE ET OEUVRE DE CRÉATION / ART, CULTURE & CREATIVE WORKS 
“What Is PER?” Patient Engagement in Research as a Hit 
Jean-Christophe Bélisle-Pipon1,2, Claudio Del Grande3,4, Geneviève Rouleau4,5 
 
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. 
Mots clés Keywords 
engagement des patients, travail artistique fondé sur la recherche, 
savoir expérientiel, autonomisation des patients, recherche axée sur 
les patients, résultats centrés sur les patients, implication des patients 
patient engagement, research-based artistic work, experiential 
knowledge, patient empowerment, patient-oriented research, patient-
centered outcomes, patient involvement 
 
 
[Researcher]  What is PER?  
  Patients explain me, explain me  
  Once more  
    
[Researcher]  Patients explain me, explain me  
  Once more  
    
  What is PER?  
  Hey Hey  
   [Patients’ back vocals]  
Whoa ooh whoa ooh 
    
[Patients]  I don’t know why you’re not fair  
  I give you my insights, but you don’t bear  
  So, am I right? What is wrong?  
  Gimme a plea  
    
[Patients]  What is PER?  
  Researchers explain me, explain me  
  Once more  
    
[Patients]  What is PER?  
  Researchers explain me, explain me  
  Once more  
   [Researchers’ back vocals]  
Whoa ooh whoa ooh whoa ooh whoa oh 
oh ooh whoa ooh whoa oh oh oh oh (Bis)  
    
[Patients]  Oh, I can help, what can I do?  
[Researcher]  I’m applying for grants and I need you  
[Both]  I know we’re a team, me and all of you  
[Researcher]  I can’t press Send  
    
[Researcher]  What is PER?  
  Funders explain me, explain me  
  Once more  
    
[Researcher]  What is PER?  
  Funders explain me, explain me  
  Once more  
Bélisle-Pipon et al. 2018 
Page 60 
   [Researchers’ back vocals]  
Whoa ooh whoa ooh whoa ooh whoa oh 
oh ooh whoa ooh whoa oh oh oh oh (Bis) 
    
[Researcher]  What is PER?  
   [Researchers’ back vocals]  
Whoo ooh whoo ooh whoo ooh  
  What is PER?  
   [Researchers’ back vocals]  
Whoo ooh who ooh whoo ooh  
  What is PER?  
[Both]  No one can tell me, can tell me  
  At once  
    
[Researcher]  Explain me  
[Researcher]  Just tell me  
    
[Patients]  I want no other,   
[Researcher]  no other advisor  
[Patients]  This is our care  
[Researcher]  Our affair  
[Both]  We are together, I need you forever  
  Is it PER…  
    
[Both]  What is PER?   
  Won’t you explain me, explain me  
  Once more  
    
  What is PER?   
  Funders explain me, explain me  
  Once more  
  Hey Hey [Patients’ back vocal] 
Whoa ooh whoa ooh whoa ooh whoa oh 
oh ooh whoa ooh whoa oh oh oh oh (Bis) 
    
  What is PER?  
  Patients explain me, explain me  
  Once more [Researchers’ back vocal] 
Whoa ooh whoa ooh whoa ooh whoa oh 
oh ooh whoa ooh whoa oh oh oh oh (Bis) 
    
  What is PER?  
  Researchers explain me, explain me  
  Once more  
    
  What is PER?  
 
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 song – pastiche of the highly successful hit “What Is Love” performed by Haddaway in the 90s’1 – addresses 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 
                                                           
1 The song was released in 1993 on the label Coconut. Written and produced by Dee Dee Halligan and Junior Torello 
(https://www.youtube.com/watch?v=HEXWRTEbj1I). 
Bélisle-Pipon et al. 2018 
Page 61 
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 superficially – minutes 
before submitting a grant application – leaving 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.  
Towards answering the question “What is PER?” 
Whether in the context of patient-oriented research (Canadian model, established by the Canadian Institutes of Health 
Research, CIHR) [7], patient-centred outcomes research (American model as defined by the Patient-Centered Outcomes 
Research Institute, PCORI) [8], or public involvement in research (British model championed by INVOLVE, funded by the 
National Institute for Health Research, NIHR) [9], engaging patients in research is complex. It requires researchers to balance 
their expertise and quest for evidence-based knowledge with the perspectives and the subjectivity of patients. It entails 
recognizing that patients have experiential knowledge that can potentially increase the relevance and validity (both internal 
and external) of research projects. To achieve this, it is necessary to have a common vision of PER as well as a clear 
understanding of respective expectations and limitations.  
 
As some funding opportunities (and increasingly scientific journals2) 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.  
 
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 receive – the 
back vocals in the song – are 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. 
 
Remerciements Acknowledgements 
JCBP est financé par des bourses postdoctorales des Instituts de 
recherche en santé du Canada (IRSC), du Fonds de recherche du 
Québec – Santé (FRQS) et l’Unité SOUTIEN-SRAP du Québec. 
CDG est financé par des bourses de doctorat du FRQS et de l’Unité 
SOUTIEN-SRAP du Québec. GR est financé par des bourses de 
doctorat du Réseau de recherche en interventions en sciences 
infirmières du Québec (RRISIQ), du FRQS, de l’Unité SOUTIEN-
SRAP du Québec et des IRSC. 
JCBP is funded by postdoctoral fellowships from the Canadian 
Institutes of Health Research (CIHR), the Québec Health Research 
Fund (FRQS) and the Québec SPOR-SUPPORT Unit. CDG is funded 
by doctoral fellowships from the FRQS and the Québec SPOR-
SUPPORT Unit. GR is funded by doctoral fellowships from the Québec 
Network on Nursing Intervention Research, the FRQS, the Québec 
SPOR-SUPPORT Unit and the CIHR. 
Conflit d’intérêts Conflicts of Interest 
JCBP est cofondateur et ancien éditeur exécutif de BioéthiqueOnline 
et membre du Conseil consultatif de rédaction de la Revue 
canadienne de bioéthique. CDG et GR n’ont rien à déclarer. 
JCBP is cofounder and former Executive Editor of BioéthiqueOnline, 
and is member of the Canadian Journal of Bioethics Editorial Advisory 
Board. CDG and GR have nothing to declare. 
 
Édition/Editors: Jacques Quintin & Elena Theodoropoulou 
 
Affiliations 
1 The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics, Harvard Law School, Cambridge, MA, USA 
2 Health Law Institute, Dalhousie University, Halifax, NS, Canada 
3 School of Public Health, Université de Montréal, Montréal, Québec, Canada 
4 University of Montreal Hospital Research Centre, Montréal, Québec, Canada 
5 Faculty of Nursing, Laval University, Québec, Québec, Canada 
 
Reçu/Received: 19 Mar 2018 Publié/Published: 6 Jul 2018 
                                                           
2 The number of journals explicitly welcoming articles about PER is growing. For instance, the British Medical Journal (BMJ) and the Canadian Medical 
Association Journal (CMAJ) both seek to publish scholarship about PER [10,11]. The BMJ (since 2015) and BMJ Open (since 2018) now require that articles 
submitted be accompanied by a patient and public involvement statement describing whether and how patients were involved in the research [12]. 
Bélisle-Pipon et al. 2018 
Page 62 
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research: doing science. Breathe Sheff. 2015;11(3):223–7.  
3. Forsman B. An ethical analysis of the phenomenon of misconduct in research. Acta Oncol. 1999 Jan 1;38(1):107–
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4. Karazivan P, Dumez V, Flora L, Pomey M-P, Del Grande C, Ghadiri DP, et al. The patient-as-partner approach in 
health care: a conceptual framework for a necessary transition. Acad Med. 2015 Apr;90(4):437–41.  
5. Rouleau G, Bélisle-Pipon J-C, Birko S, Karazivan P, Fernandez N, Bilodeau K, et al. Early career researchers’ 
perspectives and roles in patient-oriented research. Unpublished manuscript. 
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biomedical research? Soc Sci Med. 2005 Jun 1;60(11):2575–84.  
7. Canadian Institutes of Health Research. Strategy for Patient-Oriented Research. 2010. 
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“What Is PER?” Patient Engagement in Research as a Hit

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