People with lived experience (PWLE) of depression: describing and reflecting on an explicit patient engagement process within depression research priority setting in Alberta, Canada

Abstract

Plain English summaryThe Alberta Depression Research Priority Setting Project aimed to meaningfully involve patients, families and clinicians in determining a research agenda aligned to the needs of Albertans who have experienced depression. The project was modeled after a process developed in the UK by the James Lind Alliance and adapted to fit the Alberta, Canada context. This study describes the processes used to ensure the voices of people with lived experience of depression were integrated throughout the project stages. The year long project culminated with a facilitated session to identify the top essential areas of depression research focus. People with lived experience were engaged as part of the project’s Steering Committee, as survey participants and as workshop participants. It is hoped this process will guide future priority setting opportunities and advance depression research in Alberta.Abstract Background The Depression Research Priority Setting (DRPS) project has the clear aim of describing the patient engagement process used to identify depression research priorities and to reflect on the successes of this engagement approach, positive impacts and opportunities for improvement. To help support patient-oriented depression research priority setting in Alberta, the Patient Engagement (PE) Platform of the Alberta Strategy for Patient Oriented Research Support for People and Patient-Oriented Research and Trials (SUPPORT) Unit designed, along with the support of their partners in addictions and mental health, an explit process to engage patients in the design and execution of the DRPS. Methods The UK’s James Lind Alliance (JLA) Priority Setting Partnership (PSP) method was adapted into a six step process to ensure voices of “people with lived experience” (PWLE) with depression were included throughout the project stages. This study uses an explicit and parallel patient engagement process throughout each estage of the PSP designed by the PE Platform. Patient engagement was divided into a five step process: i) Awareness and relationship building; ii) Co-designing and co-developing a shared decision making process; iii) Collaborative communication; iv) Collective sensemaking; and v) Acknowledgement, celebration and recognition. A formative evaluation of the six PE processes was undertaken to explore the success of the parallel patient engagement process. Results This project was successful in engaging people with lived depression experience as partners in research priority setting, incorporating their voices into the discussions and decisions that led to the top 25 depression research questions. Conclusions The DRPS project has positively contributed to depression research in Canada by identifying the priorities of Albertans who have experienced depression for depression research. Dissemination activities to promote further knowledge exchange of prioritized research questions, with emphasis on the importance of process in engaging the voices of PWLE of depression are planned.Electronic supplementary mater...

Engaging a person with lived experience of mental illness in a collaborative care model feasibility study

“…Similar findings have been found in peer engagement for youth program development [17]. Among adults, patient involvement in mental health and substance use settings reduced hospital readmission, increased patient well-being and engagement, and provided educational opportunities to health care staff and systems [18][19][20][21][22][23][24][25][26]. Lastly, several studies identified the importance of developing new processes of patient-oriented care, with the help of PWLE, rather than using existing practices with the hope that patients will adapt [27,28].…”

Consumer engagement in occupational therapy health‐related research: A scoping review of the Australian Occupational Therapy Journal and a call to action

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“…The benefits to researchers from partnerships with consumers include enhanced knowledge of consumer engagement, improved lay communication skills, and more positive attitudes to involving consumers (Harrison et al., 2019; Haywood, Martinez, Pyatak, & Carandang, 2019). Positive impacts for consumers include an enhanced understanding of their illness, formation of social supports (Haywood et al., 2019), and enhanced confidence and competence to contribute to positive change in the health system (Breault et al., 2018).…”

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