Partnering with patients in healthcare research: a scoping review of ethical issues, challenges, and recommendations for practice

Abstract

Background: Partnering with patients in healthcare research now benefits from a strong rationale and is encouraged by funding agencies and research institutions. However, this new approach raises ethical issues for patients, researchers, research professionals and administrators. The main objective of this review is to map the literature related to the ethical issues associated with patient partnership in healthcare research, as well as the recommendations to address them. Our global aim is to help researchers, patients, research institutions and research ethics boards reflecting on and dealing with these issues. Methods: We conducted a scoping review of the ethical issues and recommendations associated with partnering with patients in healthcare research. After our search strategy, 31 peer reviewed articles published between 2007 and 2017 remained and were analyzed. Results: We have identified 58 first-order ethical issues and challenges associated with patient partnership in research, regrouped in 18 second-order ethical themes. Most of the issues are transversal to all phases and stages of the research process and a lot of them could also apply to patient-partnership in other spheres of health, such as governance, quality improvement, and education. We suggested that ethical issues and challenges of partnered research can be related to four ethical frameworks: 1) Research ethics; 2) Research integrity; 3) Organizational ethics, and 4) Relational ethics. Conclusions: We have identified numerous ethical issues associated with the recent approach of patientpartnership in research. These issues are more diverse than the issues associated with a more traditional research approach. Indeed, the current discussion on how we address ethical issues in research is anchored in the assumption that patients, as research participants, must be protected from risk. However, doing research with, and not on, the patient involves changes in the way we reflect on the ethical issues associated with this approach to research. We propose to broaden the ethical discussion on partnered research to not only rely on a research ethics framework, but to also frame it within the areas of research integrity, organizational ethics and relational ethics.

Citizen Consultation on Problematic Usage of the Internet: Ethical Considerations and Empirical Insights From Six Countries

“…Finally, it should be noted that the proposed ethical considerations for the early involvement of citizens in the emerging field of PUI do not represent an exhaustive list, but could be extended to include other useful considerations by researchers in related fields ( 11 , 23 , 34 ). Thus, issues such as tokenism (i.e., treating the consultation exercises like “tick-box” exercises), or lack of feedback for involved citizens (i.e., debriefing citizens on the ways their involvement has been taken forward by researchers), are also relevant in the context discussed.…”

“…On the other hand, the articles were considered for exclusion if they comprised case studies and were restricted to investigations in specific research area, population or country. The final selection included frameworks, guidelines, recommendations, handbooks, and checklists, but most importantly of reviews, reviews of reviews, and even frameworks of frameworks (see Figure 2 ) ( 11 , 13 – 23 ). A relatively small selection of publications considered the ethical aspects for citizen participation in research processes, in step-by-step fashion (see Figure 2 ).…”

Patient-partner engagement at the Centre de recherche du CHUS in the Province of Québec, Canada: from an intuitive methodology to outreach after three years of implementation

“…The last but not the least challenge will be to quantify the Committee’s objectives and impact using strict and context-developed metrics [ 28 , 38 ]. Indeed, the field of patient-partners is struggling to develop metrics and setting policies to address barriers and secure participation [ 39 ]. Accordingly, one of the Committee’s future objectives is to participate in efforts to develop mechanisms to more precisely qualify and, if possible, quantify patient contributions to research under our specific context and based on the PARADIGM framework for monitoring and evaluating patient engagement.…”

The Needs of Families During Cardiac Arrest Care: A Survivor- and Family-led Scoping Review Protocol

“…Our goal is to engage our patient/family coinvestigators through an "equitable collaboration with individuals, families and communities affected by a health topic at all stages of the research process, from conception of the study idea through dissemination of results/findings." 46 Identification and mitigation of the common challenges and ethical issues of patient-partnered research 47 will be actively mitigated through consultation with the local Strategy for Patient-Oriented Research Unit 48 and university research ethics office. 49…”