Background: 'Patient engagement' involves meaningful collaboration between researchers and 'patient partners' to co-create research. It helps ensure that research being conducted is relevant to its ultimate end-users. Although patient engagement within clinical research has been well documented, the prevalence and effects of patient engagement in translational preclinical laboratory research remain unclear. The aim of this scoping review is to present current patient engagement activities reported in preclinical laboratory research. Methods: MEDLINE, Embase, and grey literature were systematically searched from inception to April 2021. Studies that described or investigated patient engagement in preclinical laboratory research were included. Patient engagement activities where patients (i.e. patients, family members, caregivers or community members) provided input, or consultation on at least one element of the research process were eligible for inclusion. Study characteristics and outcomes were extracted and organized thematically. Findings: 32 reports were included (30 primary studies, 1 narrative review, and 1 researcher guide). Most studies engaged patients at the education or priority setting stages (n=26). The most frequently reported benefit of patient engagement was 'providing a mutual learning opportunity'. Reported barriers to patient engagement reflected concerns around 'differences in knowledge and research experience' and how this may challenge communication and limit meaningful collaboration. Interpretation: Patient engagement is feasible and beneficial for preclinical laboratory research. Future work should focus on assessing the impacts of patient engagement in this area of research.

Background Access to, and awareness of, appropriate authorship criteria is an important right for patient partners. Our objective was to measure medical journal Editors-in-Chief’ perceptions of including patients as (co-)authors on research publications and to measure their views on the application of the ICMJE (International Committee of Medical Journals Editors) authorship criteria to patient partners. Methods We conducted a cross-sectional survey co-developed with a patient partner. Editors-in-Chief of English-language medical journals were identified via a random sample of journals obtained from the Scopus source list. The key outcome measures were whether Editors-in-Chief believed: 1) patient partners should be (co-)authors and; 2) whether they felt the ICMJE criteria for authorship required modification for use with patient partners. We also measured Editors-in-Chief description of how their journal’s operations incorporate patient partner perspectives. Results One hundred twelve Editors-in-Chief responded to our survey (18.7% response rate; 66.69% male). Participants were able to skip any questions they did not want to answer, so there is missing data for some items. 69.2% (N = 74) of Editors-in-Chief indicated it was acceptable for patient partners to be authors or co-authors on published biomedical research articles, with the remaining 30.8% (N = 33) indicating this would not be appropriate. When asked specifically about the ICMJE authorship criteria, and whether this should be revised to be more inclusive of patient partners, 35.8% (N = 39) indicated it should be revised, 35.8% (N = 39) indicated it should not be revised, and 28.4% (N = 31) were unsure about a revision. 74.1% (N = 80) of Editors-in-Chief did not think patients should be required to have an academic affiliation to published while 16.7% (N = 18) and 9.3% (N = 10) indicated they should or were unsure. 3.6% (N = 4) of Editors-in-Chief indicated their journal had a policy that specifies how patients or patient partners should be considered as authors. Conclusions Our findings highlight gaps that may act as barriers to patient partner participation in research. A key implication is the need for education and for consensus building within the biomedical community to establish processes that will facilitate equitable patient partners inclusion.

Background A key component of patient-oriented research is the engagement of patients as partners in the design and conduct of health research. While there is now national infrastructure and networks to support the engagement of patients as partners, there remain calls for promising practices and success stories. In particular, there remains a keen interest in evaluating the impact that patient engagement has on health research studies. We aimed to investigate the impact that patient engagement had on health research conducted in Ontario, Canada. Methods Our sampling frame was studies that were awarded funding by the Ontario SPOR SUPPORT Unit. Semi-structured interviews were conducted with 10 principal investigators, members of research teams, and patient partners. Interviews explored the role of patient partners, the perceived impact of the patient engagement on the study, challenges faced, and advice for other researchers considering patient engagement. Data were analysed using the thematic analysis method with transcripts coded independently by two members of the study team. All coding and subsequent theme generation were discussed until consensus was achieved. Results There was variation in the methods used to engage patients and other stakeholders, the roles that patients and stakeholders occupied, and where they had input. Interviewees discussed two major areas of impact of patient engagement on research: impact on the study about which they were being interviewed, which tended to relate to improved relevancy of the research to the study population, and impact on themselves which led to changes in their own practice or approaches to future research. Identified challenges to patient engagement included: identifying and reaching patient advisors or patient partners, time-related challenges, and maintaining engagement over the course of the research. Conclusions There remains a need to further build out the concept of relevancy and how it may be operationalised in practice. Further, the longer-term impacts of patient engagement on researchers and research teams remains under-explored and may reveal additional elements for evaluation. Challenges to patient engagement remain, including identifying and maintaining engagement with partners that reflect the diversity of the population of interest.

Background: A key component of patient-oriented research is the engagement of patients as partners in the design and conduct of health research. While there is now national and infrastructure and networks to support the engagement of patients as partners, there remain calls for promising practices and success stories. In particular, there remains a keen interest in evaluating the impact that patient engagement has on health research studies. We aimed to investigate the impact that patient engagement had on health research conducted in Ontario, Canada.Methods: Our sampling frame was studies that were awarded funding by the Ontario SPOR SUPPORT Unit (OSSU). Semi-structured interviews were conducted with 10 principal investigators, members of research teams, and patient partners. Interviews explored the role of patient partners, the perceived impact of the patient engagement on the study, challenges faced, and advice for other researchers considering patient engagement. Data were analysed using the thematic analysis method with transcripts coded independently by two members of the study team. All coding and subsequent theme generation were discussed until consensus was achieved.Results: There was variation in the methods used to engage patients and other stakeholders, the roles that patients and stakeholders occupied, and where they had input. Interviewees discussed two major areas of impact of patient engagement on research: impact on the study about which they were being interviewed, which tended to relate to improved relevancy of the research to the study population, and impact on themselves which led to changes in their own practice or approaches to future research. Identified challenges to patient engagement included: identifying and reaching patient advisors or patient partners, time-related challenges, and maintaining engagement over the course of the research.Conclusions: There remains a need to further build out the concept of relevancy and how it may be operationalised in practice. Further, the longer-term impacts of patient engagement on researchers and research terms remains under-explored and may reveal additional elements for evaluation. Challenges to patient engagement remain, including identifying and maintaining engagement with partners that reflect the diversity of the population of interest.