Breault Lorraine J, Rittenbach Katherine, Hartle Kelly, Babins-Wagner Robbie, de Beaudrap Catherine, Jasaui Yamile, Ardell Emily, Purdon Scot E, Michael Ashton, Sullivan Ginger, Unger Aakai'naimsskai'piiaakii Sharon Ryder, Vandall-Walker Lorin, Necyk Brad, Krawec Kiara, Manafò Elizabeth, Mason-Lai Ping
1Department of Psychiatry Faculty of Medicine and Dentistry, University of Alberta, Edmonton, Canada.
DRPS Steering Committee, Edmonton, Canada.
Res Involv Engagem. 2018 Oct 16;4:37. doi: 10.1186/s40900-018-0115-1. eCollection 2018.
The 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.
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. 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. 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. 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.
艾伯塔省抑郁症研究优先事项设定项目旨在让患者、家属和临床医生切实参与确定与经历过抑郁症的艾伯塔省居民需求相契合的研究议程。该项目仿照英国詹姆斯·林德联盟开发的一个流程，并进行了调整以适应加拿大艾伯塔省的情况。本研究描述了在项目各阶段用于确保将有抑郁症亲身经历者的声音纳入其中的流程。这个为期一年的项目以一场促进会议告终，以确定抑郁症研究重点的首要关键领域。有亲身经历者作为项目指导委员会成员、调查参与者和研讨会参与者参与其中。希望这个流程将为未来的优先事项设定机会提供指导，并推动艾伯塔省的抑郁症研究。
抑郁症研究优先事项设定（DRPS）项目的明确目标是描述用于确定抑郁症研究优先事项的患者参与流程，并反思这种参与方式的成功之处、积极影响和改进机会。为了帮助支持艾伯塔省以患者为导向的抑郁症研究优先事项设定，艾伯塔省以患者为导向的研究支持战略的患者参与（PE）平台以及成瘾与心理健康领域的合作伙伴共同设计了一个明确的流程，让患者参与DRPS的设计和实施。英国詹姆斯·林德联盟（JLA）优先事项设定伙伴关系（PSP）方法被改编为一个六步流程，以确保在项目各阶段纳入有抑郁症“亲身经历者”（PWLE）的声音。本研究在PE平台设计的PSP的每个阶段都采用了明确且并行的患者参与流程。患者参与分为五个步骤：i）提高认识和建立关系；ii）共同设计和共同开发共享决策过程；iii）协作沟通；iv）集体意义建构；v）认可、庆祝和表彰。对这六个PE流程进行了形成性评估，以探索并行患者参与流程的成功之处。该项目成功地让有抑郁症亲身经历者作为研究优先事项设定的合作伙伴参与进来，将他们的声音纳入导致前25个抑郁症研究问题的讨论和决策中。DRPS项目通过确定经历过抑郁症的艾伯塔省居民对抑郁症研究的优先事项，为加拿大的抑郁症研究做出了积极贡献。计划开展传播活动，以促进对优先研究问题的进一步知识交流，重点强调在纳入抑郁症PWLE声音方面流程的重要性。
