Evolving partnerships: engagement methods in an established health services research team

Abstract

Background The Translating Research in Elder Care (TREC) program is a partnered health services research team that aims to improve the quality of care and quality of life for residents and quality of worklife for staff in nursing homes. This team includes academic researchers, trainees, research staff, citizens (persons living with dementia and family/friend caregivers of persons living in nursing homes), and decision-makers (ministries of health, health authorities, operators of nursing homes). The TREC team has experience working with health system partners but wanted to undertake activities to enhance the collaboration between the academic researchers and citizen members. The aim of this paper is to describe the TREC team members’ experiences and perceptions of citizen engagement and identify necessary supports to promote meaningful engagement in health research teams. Methods We administered two online surveys (May 2018, July 2019) to all TREC team members (researchers, trainees, staff, decision-makers, citizens). The surveys included closed and open-ended questions guided by regional and international measures of engagement and related to respondents’ experience with citizen engagement, their perceptions of the benefits and challenges of citizen engagement, and their needs for training and other tools to support engagement. We analyzed the closed-ended responses using descriptive statistics. Results We had a 78% response rate (68/87) to the baseline survey, and 27% response rate (21/77) to the follow-up survey. At baseline, 30 (44%) of respondents reported they were currently engaged in a research project with citizen partners compared to 11(52%) in the follow-up survey. Nearly half (10(48%)) of the respondents in the follow-up reported an increase in citizen engagement over the previous year. Respondents identified many benefits to citizen engagement (unique perspectives, assistance with dissemination) and challenges (the need for specific communication skills, meeting organizing and facilitation, and financial/budget support), with little change between the two time points. Respondents reported that the amount of citizen engagement in their research (or related projects) had increased or stayed the same. Conclusions Despite increasing recognition of the benefits of including persons with lived experience and large-scale promotion efforts, the research team still lack sufficient training and resources to engage non-academic partners. Our research identified specific areas that could be addressed to improve the engagement of citizens in health research.

Active involvement in scientific research of persons living with dementia and long-term care users: a systematic review of existing methods with a specific focus on good practices, facilitators and barriers of involvement

“…Furthermore, our results show that training academic researchers and involved persons is essential to develop the skills to facilitate involvement and to fulfil their role with confidence, respectively. Whilst the need for training is acknowledged by others [ 41 , 42 ], there are legitimate objections to the idea of training involved persons, as the professionalization underpinning the concept of training is at odds with voicing a lay perspective [ 43 , 44 ]. Furthermore, it is argued that experiential knowledge is compromised when training is structured according to the dominant professional epistemology of objectivity [ 45 ].…”

“…Funding bodies increasingly require involvement of the public to be part of research proposals. Yet, support in terms of financial compensation and time for the implementation of involvement in research is rarely part of funding grants [ 42 ]. In addition, whereas an emergent design could aid the impact of involvement, funders often require a pre-set research proposal in which individual components are already fixed [ 5 , 47 ].…”