Center for Healthcare Organization and Implementation Research (CHOIR), VA Bedford Healthcare System, Bedford, MA, USA.
Department of Neurology and Cancer Center, Massachusetts General Hospital, MA, Boston, USA.
J Gen Intern Med. 2022 Apr;37(Suppl 1):33-41. doi: 10.1007/s11606-021-06987-z. Epub 2022 Mar 29.
Despite increasing commitment to patient engagement in research, evaluation of the impact of these efforts on research processes, products, and teams is limited.
To explore the impacts of engaging patients as consultants to research studies by examining the experiences, impacts, and lessons learned from a program facilitating patient engagement at a Veterans Health Administration research center.
We developed a logic model to articulate the activities being implemented to support patient engagement and their anticipated outcomes. Then, we conducted qualitative, semi-structured interviews with participants in the local Veteran Consulting Network to qualitatively explore these outcomes.
Twelve researchers and eleven Veteran patients with experience working on at least one grant or funded study.
Interview transcripts were inductively coded using a consensus-based approach. Findings were synthesized using framework analysis and mapped back onto our logic model of expected patient engagement impacts.
Patient engagement improved the perceived quality and relevance of research studies as patient consultants challenged researchers' assumptions about patient populations and clinical contexts and gave feedback that helped improve the feasibility of proposed grants, readability of study materials, comprehensiveness of study assessments, and cultural sensitivity and relevance of interventions. Patient engagement also had personal benefits to researchers and patients. Researchers reported improved communication skills and higher job satisfaction. Patients reported a sense of purpose and satisfaction from their work with greater awareness of and appreciation for research.
Engaging patients in research can have multiple benefits to the people and work involved. Our evaluation process can serve as a template for other organizations to plan for and assess the impact of their own patient engagement programs. Creating logic models and updating them based on feedback from program users make engagement goals explicit, help verify expected mechanisms to achieve impact, and facilitate organizational learning.
尽管越来越多地致力于让患者参与研究,但对这些努力对研究过程、成果和团队的影响进行评估的工作却十分有限。
通过考察一个在退伍军人健康管理局研究中心促进患者参与的项目,探索将患者作为顾问纳入研究的影响,以此来评估其影响。
我们制定了一个逻辑模型来阐明为支持患者参与而实施的活动及其预期成果。然后,我们对当地退伍军人咨询网络中的参与者进行了半结构化的定性访谈,以深入探讨这些结果。
12 名研究人员和 11 名有过至少一项资助研究经验的退伍军人患者。
采用共识方法对访谈记录进行归纳编码。采用框架分析法对研究结果进行综合分析,并将其映射回我们预期的患者参与影响的逻辑模型。
患者参与提高了研究的质量和相关性,因为患者顾问对研究人员关于患者群体和临床环境的假设提出了挑战,并提供了反馈,有助于提高拟议拨款的可行性、研究材料的可读性、研究评估的全面性,以及干预措施的文化敏感性和相关性。患者参与对研究人员和患者也有个人收益。研究人员报告说,他们的沟通技巧得到了提高,工作满意度也有所提高。患者报告说,他们从与研究相关的工作中获得了目标感和满足感,对研究的认识和欣赏也有所提高。
让患者参与研究可以为相关人员和工作带来多重益处。我们的评估过程可以作为其他组织计划和评估自身患者参与项目影响的模板。创建逻辑模型并根据项目使用者的反馈进行更新,可以使参与目标更加明确,有助于验证实现影响的预期机制,并促进组织学习。