Santana Maria-Jose, Zelinsky Sandra, Ahmed Sadia, Doktorchik Chelsea, James Matthew, Wilton Stephen, Quan Hude, Fernandez Nicolas, Anderson Todd, Butalia Sonia
Community Health Sciences, University of Calgary, Calgary, Alberta, Canada
Pediatrics, University of Calgary, Calgary, AB, Canada.
BMJ Open. 2020 Feb 6;10(2):e031187. doi: 10.1136/bmjopen-2019-031187.
The overall goal of this study is to identify priorities for cardiovascular (CV) health research that are important to patients and clinician-researchers. We brought together a group of CV patients and clinician-researchers new to patient-oriented research (POR), to build a multidisciplinary POR team and form an advisory committee for the Libin Cardiovascular Institute of Alberta.
This qualitative POR used a participatory health research paradigm to work with participants in eliciting their priorities. Therefore, participants were involved in priority setting, and analysis of findings. Participants also developed a plan for continued engagement to support POR in CV health research.
Libin Cardiovascular Institute of Alberta, Cumming School of Medicine, University of Calgary, Canada.
A total of 23 participants, including patients and family caregivers (n=12) and clinician-researchers (n=11).
Participants identified barriers and facilitators to POR in CV health (lack of awareness of POR and poor understanding on the role of patients) and 10 research priorities for improving CV health. The CV health research priorities include: (1) CV disease prediction and prevention, (2) access to CV care, (3) communication with providers, (4) use of eHealth technology, (5) patient experiences in healthcare, (6) patient engagement, (7) transitions and continuity of CV care, (8) integrated CV care, (9) development of structures for patient-to-patient support and (10) research on rare heart diseases.
In this study, research priorities were identified by patients and clinician-researchers working together to improve CV health. Future research programme and projects will be developed to address these priorities. A key output of this study is the creation of the patient advisory council that will provide support and will work with clinician-researchers to improve CV health.
本研究的总体目标是确定对患者和临床研究人员而言重要的心血管（CV）健康研究重点。我们召集了一组CV患者以及刚接触以患者为导向研究（POR）的临床研究人员，组建了一个多学科POR团队，并为艾伯塔省利宾心血管研究所成立了一个咨询委员会。
这项定性POR采用参与式健康研究范式，与参与者共同确定他们的研究重点。因此，参与者参与了重点确定和结果分析。参与者还制定了持续参与计划，以支持CV健康研究中的POR。
加拿大卡尔加里大学卡明医学院艾伯塔省利宾心血管研究所。
共有23名参与者，包括患者及其家庭护理人员（n = 12）和临床研究人员（n = 11）。
参与者确定了CV健康领域POR的障碍和促进因素（对POR缺乏认识以及对患者角色理解不足）以及改善CV健康的10个研究重点。CV健康研究重点包括：（1）CV疾病预测与预防；（2）获得CV护理；（3）与医疗服务提供者的沟通；（4）电子健康技术的使用；（5）患者的医疗保健体验；（6）患者参与；（7）CV护理的过渡与连续性；（8）综合CV护理；（9）建立患者间支持结构；（10）罕见心脏病研究。
在本研究中，患者和临床研究人员共同确定了改善CV健康的研究重点。未来将制定研究计划和项目以解决这些重点。本研究的一项关键成果是成立了患者咨询委员会，该委员会将提供支持，并与临床研究人员合作以改善CV健康。
