Leese Jenny, Macdonald Graham, Kerr Sheila, Gulka Lianne, Hoens Alison M, Lum Wendy, Tran Bao Chau, Townsend Anne F, Li Linda C
Department of Physical Therapy, University of British Columbia, Vancouver, British Columbia, Canada.
Arthritis Research Canada, Richmond, British Columbia, Canada.
BMJ Open. 2018 Aug 17;8(8):e022154. doi: 10.1136/bmjopen-2018-022154.
To better understand, based on patient partners' experiences, benefits and risks in patient partner-researcher relationships in a health research setting.
Qualitative interviews with thematic analysis informed by a relational ethics lens.
A multidisciplinary health research centre in Vancouver, Canada. This study was codeveloped by patient partners and researchers at the centre.
22 people living with arthritis, with experience as members of a patient advisory board at the research centre from 1 month to 10 years.
We identified three main themes: (1) Being Heard: Participants had experienced uncomfortable emotions (eg, feelings of insecurity) in their relationships with researchers. The discomfort, however, was minimised by the demonstration of mutual respect in their interactions. Specifically, participants valued environments without a hierarchy between patient partners and researchers, where contributions of each party were considered equally important, and where patients' voices were heard; (2) Cobuilding social relations: Participants valued building social relations with researchers beyond their expected interactions as partners in research and (3) Adding another spinning plate to an already busy life: Participants valued relationships with researchers who had cocreated environments that minimised the risks of physical and emotional impacts (eg, fatigue, stress, guilt) on them while juggling multiple obligations, priorities and their health.
Findings provide valuable insights to guide relationship building between patient partners and researchers. Informed by a relational ethics lens, these findings are a critical step in supporting an ethically sound practice of patient engagement in research that prioritises patients' perspectives.
基于患者合作伙伴的经历，更好地了解健康研究环境中患者合作伙伴与研究人员关系的益处和风险。
采用基于关系伦理视角的主题分析进行定性访谈。
加拿大温哥华的一个多学科健康研究中心。本研究由该中心的患者合作伙伴和研究人员共同开展。
22名患有关节炎的患者，他们作为研究中心患者咨询委员会成员的时间从1个月到10年不等。
我们确定了三个主要主题：（1）被倾听：参与者在与研究人员的关系中经历过不舒服的情绪（如不安全感）。然而，通过在互动中表现出相互尊重，这种不适感被最小化。具体而言，参与者重视患者合作伙伴与研究人员之间没有等级制度的环境，在这种环境中，各方的贡献被视为同等重要，患者的声音能够被听到；（2）共同构建社会关系：参与者重视与研究人员建立超越他们作为研究伙伴预期互动的社会关系；（3）给本就忙碌的生活再添一份负担：参与者重视与研究人员的关系，这些研究人员共同创造了环境，在他们兼顾多项义务、优先事项和自身健康的同时，将对他们身体和情感的影响（如疲劳、压力、内疚）风险降至最低。
研究结果为指导患者合作伙伴与研究人员之间的关系建立提供了有价值的见解。基于关系伦理视角，这些发现是支持以患者视角为优先的符合伦理的患者参与研究实践的关键一步。
