Moving towards a more inclusive patient and public involvement in health research paradigm: the incorporation of a trauma-informed intersectional analysis

Carolyn Shimmin,Kathryn M Sibley,Josée G Lavoie,Kristy D M Wittmeier,Evan D Wicklund

doi:10.1186/s12913-017-2463-1

Abstract

BackgroundThe concept of patient engagement in health research has received growing international recognition over recent years. Yet despite some critical advancements, we argue that the concept remains problematic as it negates the very real complexities and context of people’s lives. Though patient engagement conceptually begins to disrupt the identity of “researcher,” and complicate our assumptions and understandings around expertise and knowledge, it continues to essentialize the identity of “patient” as a homogenous group, denying the reality that individuals’ economic, political, cultural, subjective and experiential lives intersect in intricate and multifarious ways.DiscussionPatient engagement approaches that do not consider the simultaneous interactions between different social categories (e.g. race, ethnicity, Indigeneity, gender, class, sexuality, geography, age, ability, immigration status, religion) that make up social identity, as well as the impact of systems and processes of oppression and domination (e.g. racism, colonialism, classism, sexism, ableism, homophobia) exclude the involvement of individuals who often carry the greatest burden of illness — the very voices traditionally less heard in health research. We contend that in order to be a more inclusive and meaningful approach that does not simply reiterate existing health inequities, it is important to reconceptualize patient engagement through a health equity and social justice lens by incorporating a trauma-informed intersectional analysis.SummaryThis article provides key concepts to the incorporation of a trauma-informed intersectional analysis and important questions to consider when developing a patient engagement strategy in health research training, practice and evaluation. In redefining the identity of both “patient” and “researcher,” spaces and opportunities to resist and renegotiate power within the intersubjective relations can be recognized and addressed, in turn helping to build trust, transparency and resiliency — integral to the advancement of the science of patient engagement in health research.

Highlights

The concept of patient engagement in health research has received growing international recognition over recent years
It excludes the involvement of individuals who may not identify as “patients” for a myriad of reasons — people who are unable to access the healthcare system because of geography and/or systemic barriers; individuals living with mental health or substance use issues who may be hesitant in taking up the identity of patient due to the associated stigma attached to such a label; and people who refuse to engage or prematurely exit the healthcare system because of unresponsive or disrespectful care
The social gradient to health as well as the inverse care law make evident that patient engagement strategies and approaches that do not consider the simultaneous interactions between different social categories that make up social identity, as well as the impact of systems and processes of oppression and domination, risk excluding the involvement of individuals who often carry the greatest burden of illness — the very voices traditionally less heard in health research

Summary

Discussion

How a trauma-informed intersectional analysis can inform public involvement in health research strategies In acknowledging: firstly, the problematic nature of the conceptualization of patient engagement especially with regard to the inclusion of voices traditionally less heard in health research; and secondly how the incorporation of a trauma-informed intersectional analysis might lead to more authentic and meaningful involvement of people with lived experience, their families and communities in health research; the question becomes how do we bridge the theory to action gap in order to ameliorate engagement practice? We propose a number of ways below in which a trauma-informed intersectional analysis can be integrated into training, practice and evaluation of public involvement in health research. Evaluative measures have to look at the level of public engagement in health research (whether it be information sharing, consultation, collaboration or community-driven) and the quality and integrity of the engagement process (e.g. active participation, inclusion of relevant perspectives, mutual respect, clear and accountable communication, safety, etc.) and the overall impact of involvement of people with lived experience, on the research and the researcher and public research partner. Did the research team have access to cultural and gender responsive support services in case a researcher or public research partner requires additional support due to past experiences of trauma?

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