Patient Engagement Methods Cluster
The themes were identified via a thorough consultation process with diverse stakeholders with expertise/interest in patient engagement methods in BC. In total, we conducted 32 individual and 2 focus group interviews (38 people participated in either an interview or focus group), and 62 people completed an online survey. We also conducted a Tweetchat, which included 38 active participants. Participants in the stakeholder consultation exercise included patient partner, researcher, healthcare provider and decision maker representatives from across BC. Analysis of the findings of the stakeholder consultations was conduced by PE Methods Cluster Lead Erin Michalak and KT Specialist Alison Hoens.
One dominant theme stood out, irrespective of consultation method: Advancing and Embracing Diversity in Patient Engagement in Research in BC. Broadly speaking, many of the stakeholder consultation participants spoke to significant strengths and strides in advancing patient engagement in research in the province, and provided impressive case examples of innovative research undertaken or underway. However, a high proportion of participants also spoke to a collective need to ‘move the dial’ in terms of advancing methods with the aim of empowering people from marginalized, disenfranchised or underserved populations who often face multiple, intersecting barriers to fully engage in research.
Other themes (described below) were identified during the stakeholder consultations, but the dominance of the ‘Diversity’ theme was notable. We are therefore proposing that the work ahead for the PE Methods Cluster speaks clearly to this theme. Specifically, we propose that all PE Methods Cluster projects should, at some level, seek to advance the science of patient engagement in diverse populations.
What do we mean when we use the term ‘diversity’ in this context? Participants provided specific examples of the need for improved engagement methods in research in a range of traditionally marginalized populations. These include, but are not limited to:
- Patients experiencing multiple inter-sectional barriers, stigmatized identities, inequities or forms of oppression;
- Indigenous/First Nations peoples;
- Patients living in rural/remote areas in BC;
- Youth/older adults;
- Ethnic minority/immigrant/racialized populations;
- People of diverse genders (a preponderance of female participants in research was spoken to, and the need for improved methods for engagement of people who identify as transgender/gender-diverse);
- Patients identifying as LGBTQ2;
- Patients who are in poverty/low SES;
- Patients who are in an acute stage of illness or experiencing a complicated illness trajectory (e.g., co-morbidities, or the experience of more than one health condition at once)
Discussions around the theme of ‘diversity’ did not speak frequently to specific project ideas, but instead to the values seen as underpinning the need for the PE Methods Cluster to advance the science in the area. Values and opportunities for research advancement included: appreciating intersectionality, attention to redistribution of power, the merits of a health equity lens and the desire for the PE Methods Cluster to co-create authentic methods for BC’s First Nations to engage in health research and share traditional ways of knowing.
Sub-theme A. Patient Priority Setting. This sub-theme was nested within rich conversations about the need for patients, where possible, to be included from the beginning to the end of the cycle of research and knowledge translation. The most prominent gap spoken to in the consultations concerned the need for improved methods to involve patients in priority setting for research. Specific project examples included rigorous comparisons of various research methodologies (e.g., Deliberative Dialogue, Delphi Consensus Consultation methods, quantitative methods, mixed methods).
Sub-theme B. Harnessing Digital Health Technologies. This sub-theme spoke to a perceived opportunity to harness the rapidly evolving field of digital health technologies in the work ahead of the PE Methods Cluster. Specific project examples included digital methods to advance ‘Citizen Science’ (broadly defined as a social movement, wherein the public actively engage in scientific research activities through their intellectual efforts, knowledge and resources, or by contributing their own information (e.g., health-related data; lived experiences), projects to explore online platforms and social networking to advance patient engagement in research and projects on patient perceptions of the ethics of AI/machine learning/newer technologies such as Blockchain.
Sub-theme C. Advancing Methods for, and Evaluation of, Recruitment and Patient Role Optimisation. This sub-theme spoke to a desire to advance recruitment methods for patient-engaged research projects, and to develop better methods to assess, articulate and evaluate patient roles in research. Specific project examples included projects to identify new evidence on methods for matching of patients to projects/researchers, projects designed to deepen understanding of the most effective roles patient partners can play in diverse research studies and to help identify when, whom, and how best to engage, and projects to better evaluate/measure the impact of recruitment strategies on a range of (e.g., patient-centric, research-centric, policy-centric) outcomes (e.g., patient satisfaction/health and psychosocial outcomes, research process/quality/impact, policy level impacts).