Researching what matters to improve chronic pain care in Canada: A priority-setting partnership process to support patient-oriented research

Abstract

Background Chronic pain affects more than 6 million Canadians. Patients need to be involved in setting research priorities to ensure a focus on areas important to those who will be most impacted by the results. Aims The aim of this study was to leverage patient experiences to identify chronic pain research priorities in Canada. Method The process was informed by the James Lind Alliance. After gathering an exhaustive list of questions using surveys, town hall meetings, interviews, and social media consultations, we used a computerized Delphi with four successive iterations to select the final list of research priorities. The final Delphi round was conducted by a panel of ten patients living with chronic pain and ten clinicians from different disciplines. Results We received more than 5000 suggestions from 1500 people. The Delphi process led to the identification of 14 questions fitting under the following 4 themes: (1) improving knowledge and competencies in chronic pain; (2) improving patient-centered chronic pain care; (3) preventing chronic pain and reducing associated symptoms; and (4) improving access to and coordination of patient-centered chronic pain care. Challenges included the issue of chronic pain being ubiquitous to many diseases, leading to many initial suggestions focusing on these diseases. We also identified the need for further engagement efforts with marginalized groups in order to validate the priorities identified or identify different sets of priorities specific to these groups. Conclusion The priorities identified can guide patient-oriented chronic pain research to ultimately improve the care offered to people living with chronic pain.

Citizen and stakeholder led priority setting for long-term care research: identifying research priorities within the Translating Research in Elder Care (TREC) Program

“…To address our specific goals, we adapted the priority setting methods described by the James Lind Alliance (JLA) [18]. Typically, JLA priority setting partnerships bring together patients and clinicians to identify unanswered research questions in a given clinical area; the list of finalized priorities is then released publicly with the goal of influencing funding agencies and researchers [4,19,20]. Priority setting methods include a widely distributed survey with open ended questions on a specific clinical area to generate ideas for research, response management which includes collating and removing duplicates, literature searches to determine if sufficient research has been conducted on responses, and an inperson workshop with approximately 20-25 respondents to identify the final priorities.…”

Guidance on authorship with and acknowledgement of patient partners in patient-oriented research

“…The Network aims to increase access to care for people living with pain and to speed translation of research into care. Patients are actively involved and participating as partners throughout the Network's governance, priority setting [4], research, and knowledge translation activities. Given this high level of patient engagement across the Network, there have been instances where patient partners have been recognized as authors on scientific publications from Networkfunded research projects [5] (personal communication with Dr. Dave Walton, March 5, 2020).…”

The lived experience of anxiety and the many facets of pain: A qualitative, arts-based approach

“…30,39 Capturing experiences adequately and accurately is an important step in validating health and illness models, including chronic pain models in children and youth. 40,41 Woodgate and colleagues have provided support for the effectiveness of qualitative, arts-based methods in understanding health and illness experiences in young people by using drawing 36,42 and photovoice. 36,37,[43][44][45][46][47][48][49] The aim of this article is to highlight the ways in which pain is a central experience for young people living with an anxiety disorder.…”