Moving patient-oriented research forward: thoughts from the next generation of knowledge translation researchers

Abstract

Plain English summaryAs knowledge translation trainee participants, we report on the discussions that took place during the 2017 Knowledge Translation Canada Summer Institute. The theme of the institute was patient-oriented research and patient engagement in research. Trying to move knowledge into health care practice can be difficult. Including patients and families as members of the research team can help to overcome some of these challenges by producing more relevant research designs and results. However, in the absence of guidelines and best practices, it can be difficult for trainees and researchers to effectively engage patients and families in designing and conducting research. We detail how trainees and early career researchers are currently engaging patients in their research, the strengths and challenges of engaging patients in research, and lessons learned. These discussions have helped us to identify important areas where future training and guidance is needed to support trainees as patient-oriented researchers.Abstract Background Moving knowledge into health care practice can present a number of challenges for researchers. Including patients and families as members of the research team can help to overcome some of these challenges by producing more relevant research designs and results. However, many trainees and researchers experience difficulty in engaging patients and families in research effectively. Main body We report on the discussions that took place at the 2017 Knowledge Translation (KT) Canada Summer Institute (KTCSI). The theme of the KTCSI was patient-oriented research and patient engagement in research. We provide an important viewpoint on how trainees and early career researchers are currently engaging patients in their research, the strengths and challenges of engaging patients in research, and lessons learned. As the target audience of the KTCSI, we provide our thoughts on what is needed to support trainees and researchers to more effectively engage patients and families in research. Conclusion While many of the participants at the KTCSI are conducting patient-oriented research, practical guidance, resources and tools are needed to ensure the effective engagement of patients in research. These discussions have helped us to identify how to move forward as patient-oriented researchers and where future work and support is needed to achieve effective engagement.

Patients as Agents in Behavioral Health Research and Service Provision: Recommendations to Support the Learning Health System

“…14,15 On the other hand, in patientcentered outcomes research (PCOR) initiatives, tokenistic involvement of patients is frequently perceived as a potential negative aspect. [16][17][18][19][20] Patient partners themselves have expressed the concern that too much patient influence can negatively affect research quality and study generalizability and lead to a discounting of researchers' perspective. 21 Additionally, patients who have the time and interest in collaborating with researchers may not represent the larger patient population.…”

“…Researchers, health care professionals, and patients have varying ideas about the meaning of patient participation in a behavioral health context. 22 Researchers cite multiple reasons to engage patients as research partners, such as improving capacity for PCOR among both researchers and patients 19 and developing better patient governance in research involving patients. 23 Patients are particularly well positioned to assist with research proposal development because they can identify topics that are meaningful and relevant to patients and their caregivers.…”

“…A survey of Canadian PCOR researchers reported less involvement of patient partners in data collection and analysis and dissemination of results. 19 In implementation research, investigators view patient involvement in research positively, though there is less support for patient involvement in advising on intervention sustainability poststudy. 20 This suggests that although researchers are open to engaging patients in some activities they are not necessarily on board with implementing patients' ideas about practice change.…”

“…This is partly due to the challenge of recognizing the difference between patients as research participants and as research partners. 19 Activities that involve engagement with patients, such as clinical trials, may create two-way communication that researchers mistake for partnering. For example, patient-reported outcome measure (PROM) use has become common in clinical trials, including trials that investigate mental health interventions.…”

“…Recruiting and retaining patient partners who are representative of a particular patient population and overcoming the stigma attached to some conditions make partnering with patients in research more difficult. 19 In general, recruiting and retaining enrollees in research addressing mental health concerns may be more difficult than for research related to other medical conditions, and this aspect of research merits particular consideration. Patients often have many roles and responsibilities to juggle in their daily lives and may be limited in the time they can devote to research partnerships, despite having a strong interest in doing so.…”