Exploring Ethical Issues Related to Patient Engagement in Healthcare: Patient, Clinician and Researcher’s Perspectives

Montreuil, Michèle; Martineau, Joé T.; Racine, Éric

doi:10.1007/s11673-019-09904-6

Cited by 31 publications

(45 citation statements)

References 37 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…In line with this pragmatic view, we identified ethical aspects based on any mention of ethical principles or values that touched upon children's engagement in the research process, and included children's experiences and perspectives when available (Montreuil, Martineau et al, 2019). For example, we included the extent to which an environment promotes children's agency, since agency is fundamental to theories of human flourishing (Ryff & Singer, 2008).…”

Section: Data Charting Proceduresmentioning

confidence: 99%

A Review of Approaches, Strategies and Ethical Considerations in Participatory Research With Children

Montreuil

Bogossian

Laberge-Perrault

et al. 2021

International Journal of Qualitative Methods

Self Cite

View full text Add to dashboard Cite

Participatory research can change the view of children from research subjects to active partners. As active partners, children can be recognized as agents who can contribute to different steps of the research process. However, “participatory research” is an umbrella term that covers both the collection of data with children and children’s participation in making decisions related to the research process. As such, it raises particular challenges for researchers. Based on a pragmatic ethics approach, we were inspired by the realist review methodology to synthesize the current literature, identify different strategies used to engage children aged 12 and below in participatory research, and analyze how they affect children’s active participation and the ethical aspects related to each. Fifty-seven articles were retained for inclusion in the review. A variety of strategies were used to involve children in the research process, including discussion groups, training/capacity-building sessions, photography and filming, children as data collectors and questionnaires. The most prevalent ethical considerations identified were related to power dynamics and strategies to facilitate children’s expression and foster the authenticity of children’s voices. Researchers should address these ethical considerations to actively involve children within the research process and prevent tokenistic participation. Active inclusion of children in research could include co-identifying with them how they want to be involved in knowledge production (if they want to) from the beginning of a project.

show abstract

Section: Data Charting Proceduresmentioning

confidence: 99%

A Review of Approaches, Strategies and Ethical Considerations in Participatory Research With Children

Montreuil

Bogossian

Laberge-Perrault

et al. 2021

International Journal of Qualitative Methods

Self Cite

View full text Add to dashboard Cite

show abstract

“…Researchers should be particularly mindful of the subtle influences of relational power, especially when selecting their own patients to be patient-partners [50]. Relational power differences may be experienced more acutely by FSI patient-partners who are suffering loss of self-esteem related to illness, loss of function, or altered perception of self; all of which may make them less inclined to share negative experiences so as to preserve the caring relationship with their clinician on the research team [43,51]. Differences in relational power may potentially silence less confident patients and inhibit their capacity to challenge the 'professional' voices around the table [52].…”

Section: Discussionmentioning

confidence: 99%

“…Strategies to reduce relational power differentials and promote participation include providing networking opportunities outside of the study and having meetings facilitated by staff external to the core project team [26]. There is also the risk that some patients may expect to receive preferential treatment if they agree to become project partners, given their direct access to their clinician [51].…”

Section: Discussionmentioning

confidence: 99%

Ethical considerations for engaging frail and seriously ill patients as partners in research: sub-analysis of a systematic review

et al. 2021

View full text Add to dashboard Cite

Background The commitment to engage patients as partners in research has been described as a political, moral and ethical imperative. Researchers feel ill-equipped to deal with potential ethical implications of engaging patients as partners. The aim of this study is to identify the ethical considerations related to engaging frail and seriously ill (FSI) patients as partners in research. Methods We conducted a sub-analysis of a prior systematic review of 30 studies that engaged FSI patients as partners in research. Studies were included if they reported ethical considerations associated with partnering. We performed deductive content analysis, data were categorized according to Beauchamp and Childress’ Principles of Biomedical Ethics (2019): autonomy, non-maleficence, beneficence, and justice. Results Twenty-five studies were included. Common ethical considerations reported in relation to the principles were: autonomy – promoting desired level of involvement, addressing relational and intellectual power, facilitating knowledge and understanding of research; non-maleficence – protection from financial burden, physical and emotional suffering; beneficence – putting things right for others, showing value-added, and supporting patient-partners; and, justice – achieving appropriate representation, mutual respect for contributions, and distributing risks and benefits. Conclusions When partnering with FSI patients, research teams need to establish shared values and ensure processes are in place to identify and address ethical issues. Researchers and patients should work together to clarify the intent and outcomes of the partnership, actively address power differentials, recognize and minimize the potential for unintended harm, and strive to maximize the benefits of partnership. Systematic review registration The protocol for the original systematic review has been registered with the International Prospective Register of Systematic Reviews PROSPERO (CRD42019127994).

show abstract

“…Importantly, implementing models for training and supervising representatives and evaluating engagement while avoiding tokenism requires an evidence-based approach. 25 Many innovative examples are available to guide institutions in providing this infrastructure and support for P2C2 representatives. [26][27][28][29][30] We close by expressing our gratitude to Evelyne de Leeuw for stirring the field of P2C2 engagement research.…”

Section: The Role Of Health Systemsmentioning

confidence: 99%

Patient, Public, Consumer, and Community Engagement: From Consucrat to Representative Comment on "The Rise of the Consucrat"

DeCamp

Brewer

Dukhanin

2020

Int J Health Policy Manag

View full text Add to dashboard Cite

Patient, public, consumer, and community (P2C2) engagement in healthcare delivery, research, and policy-making has been long considered an ethical obligation and is increasingly a regulatory requirement globally. The requirement to include a P2C2 member on various governing bodies may have inadvertently created what Evelyne de Leeuw calls the "consucrat" – a career consumer who has been designated and professionalized to function on behalf of a particular group or community. The concept of a consucrat can be problematic when a P2C2 member is co-opted by an institution governing body or in situations where institutions only seek and listen to the same voice over time. In this commentary, we suggest that one way to avoid these problems is to take seriously the concept and process of representation. Representation is only meaningful when P2C2 members are actively connected with those whom they represent. Doing so helps ensure P2C2 members remain grounded in the real-world concerns of their constituency and that representatives, backed by the voices of others, will be more powerful in effecting change.

show abstract

Exploring Ethical Issues Related to Patient Engagement in Healthcare: Patient, Clinician and Researcher’s Perspectives

Cited by 31 publications

References 37 publications

A Review of Approaches, Strategies and Ethical Considerations in Participatory Research With Children

A Review of Approaches, Strategies and Ethical Considerations in Participatory Research With Children

Ethical considerations for engaging frail and seriously ill patients as partners in research: sub-analysis of a systematic review

Patient, Public, Consumer, and Community Engagement: From Consucrat to Representative Comment on "The Rise of the Consucrat"

Contact Info

Product

Resources

About