Patient engagement in a Canadian health research funding institute: implementation and impact.

BACKGROUND: Patient engagement (PE) or involvement in research is when patient partners are integrated onto teams and initiatives (not participants in research). A number of health research funding organisations have PE frameworks or rubrics but we are unaware of them applying and reporting on their own internal PE efforts. We describe our work at the Canadian Institutes of Health Research's Institute of Musculoskeletal Health and Arthritis (CIHR IMHA) to implement, evaluate and understand the impact of its internal PE strategy. METHODS: A co-production model was used involving patient partners, a PE specialist and staff from IMHA. A logic model was co-developed to guide implementing and evaluating IMHA's PE strategy. Some of evaluating the PE strategy and understanding its impact was a collaboration between the Public and Patient Engagement Collaborative (McMaster University) and IMHA. RESULTS: IMHA convened a PE Research Ambassador (PERA) group which co-led this work with the support of a PE specialist. In doing so, PERA had a number of meetings since 2020, set its own priorities and co-produced a number of outputs (video, publications, webinars, blog and modules called the How-to Guide for PE in Research). This work to evaluate and measure impacts of IMHA's PE strategy revealed positive results, for example, on PERA members, Institute Advisory Board members and staff, as well as beyond the institute based on uptake and use of the modules. Areas for improvement are mainly related to increasing the diversity of PERA and to improving accessibility of the PE outputs (more languages and formats). CONCLUSIONS: Implementing a PE strategy within CIHR IMHA resulted in several PE activities and outputs with impacts within and beyond the institute. We provide templates and outputs related to this work that may inform the efforts of other health research funding organisations. We encourage health research funders to move beyond encouraging or requiring PE in funded projects to fully 'walk the talk' of PE by implementing and evaluating their own PE strategies.

The Role of Patient Advisory Councils in Health Research: Lessons From Two Provincial Councils in Canada.

This article describes two patient advisory councils (PACs) in Canada in order to contribute to the limited evidence base on how they might facilitate patient engagement in health research. Specifically, members of PACs from Newfoundland and Labrador and Alberta describe their councils' governance structure, primary functions, creation and composition, and recount specific research-related activities with which they have been involved. Key challenges of these councils and facilitators of their use are also presented. Finally, members from both councils recount lessons learned and offer suggestions for others interested in advisory councils as a mechanism for patient engagement in any health research project. Members believe patient engagement can result in better quality research and encourage decision makers and researchers to utilize patients' valuable input to inform health system changes and drive priorities at a policy level.

Canadians' views on the use of routinely collected data in health research: a patient-oriented cross-sectional survey.

BACKGROUND: Little is known about Canadians' knowledge of and level of support for using administrative and other large, routinely collected data for health research, despite the benefits of this type of research to patients, health care systems and society. We sought to benchmark the views of Canadian adults on this topic. METHODS: Researchers and patient leaders of 3 joint and skin disease organizations codeveloped a cross-sectional online survey that was conducted between January and August 2017. The patient partners were engaged as full partners. Recruitment was mainly through the organizations' websites, email and social media. The survey captured respondents' initial perceptions, then (after background information on the topic was provided) elicited their views on the benefits of health research using routinely collected data, data access/privacy concerns, ongoing perceptions and educational needs. RESULTS: Of the 230 people who consented, 183 (79.6%) started the survey, and 151 (65.6%) completed the survey. Of the 151, 117 (77.5%) were women, 84 (55.6%) were British Columbians, 87 (57.6%) were university graduates, and 101 (66.9%) had a chronic disease. At the beginning of the survey, 119 respondents (78.8%) felt positively about the use of routinely collected data for health research. Respondents identified the ability to study long-term treatment effects and rare events (114 [75.5%]) and large numbers of people (110 [72.8%]) as key benefits. Deidentification of personal information was the top privacy measure (135 [89.4%]), and 101 respondents (66.9%) wanted to learn more about data stewards' granting access to data. On survey completion, more respondents (141 [93.4%]) felt positively about the use of routinely collected data, but only 87 (57.6%) were confident about data security and privacy. INTERPRETATION: Respondents generally supported the use of deidentified routinely collected data for health research. Although further investigation is needed with more representative samples, our findings suggest that additional education, especially about access and privacy controls, may enhance public support for research endeavours using these data.

Patient Perspectives on the Challenges and Responsibilities of Living With Chronic Inflammatory Diseases: Qualitative Study.

BACKGROUND: Collectively, chronic inflammatory diseases take a great toll on individuals and society in terms of participation restrictions, quality of life, and economic costs. Although prior qualitative studies have reported patients' experiences and challenges living with specific diseases, few have compared the consequences of disease management in daily life across different types of inflammatory diseases in studies led by patient partners. OBJECTIVE: The aim of this study was to identify the significant consequences of inflammatory arthritis, psoriasis, and inflammatory bowel diseases on daily life and explore commonalities across diseases. METHODS: A cross-sectional Web-based survey was designed by patient research partners and distributed by patient awareness organizations via their social media channels and by sharing a link in a newspaper story. One open-ended item asked about burdens and responsibilities experienced in daily life. Informed by narrative traditions in qualitative health research, we applied a thematic content analysis to participants' written accounts in response to this item. This is an example of a study conceived, conducted, and interpreted with patients as research partners. RESULTS: A total of 636 Canadians, with a median age band of 55-64 years, submitted surveys, and 80% of the respondents were women. Moreover, 540 participants provided written substantive responses to the open-ended item. Overall, 4 main narratives were generated: (1) daily life disrupted; (2) socioeconomic vulnerabilities; (3) stresses around visible, invisible, and hiding disabilities; and (4) actions aimed at staying positive. Ways in which participants experienced social stigma, pain and fatigue, balancing responsibilities, and worries about the future appeared throughout all 4 narratives. CONCLUSIONS: People living with chronic inflammatory diseases affecting joints, skin, and the digestive tract report important gaps between health, social, and economic support systems that create barriers to finding the services they need to sustain their health. Regardless of diagnosis, they report similar experiences navigating the consequences of lifelong conditions, which have implications for policy makers. There is a need for outcome measures in research and service delivery to address patient priorities and for programs to fill gaps created by the artificial administrative separation of health services, social services, and income assistance.