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Engaging patients and the public in Health Research: experiences, perceptions and training needs among Manitoba health researchers.

ABSTRACT: Background:The significance of patient and public engagement is increasingly recognized in health research, demonstrated by explicit requirements for patient and public engagement by funding agencies and journals. Such requirements have charged health researchers with leading patient and public engagement efforts, but evidence suggests that this practice is still evolving. Little research has explored the experiences and training needs of health researchers. This study aimed to establish a baseline understanding of the experiences, perceptions and training needs of health researchers in engaging patients and the public in health research in the context of Manitoba. Methods:A cross-sectional 50-item questionnaire was distributed using a multi-phase purposive sampling strategy targeting health researchers in Manitoba, Canada. Data was summarized using frequencies, percentages and analyzed using chi-square testing. A local patient engagement advisory group was consulted at the interpretation stage of the study to obtain feedback and input on the findings and their implications. Results:Responses from 53 health researchers were included. Most participants had engaged patients and the public in their own research (n =?43, 81.1%). Those who had engaged reported having some (n =?19, 44.2%), extensive (n =?14, 32.6%) or a little (n =?10, 23.3%) experience with this process. Most engaged at the levels of inform, consult or involve (81.3, 64.6 and 54.2% respectively), while fewer engaged at the collaborate (37.5%) or patient-directed levels (12.5%). Recruitment occurred using a number of approaches and engagement occurred at various phases of the research process, while main groups engaged were patients (n =?38, 82.6%) and families/caregivers (n =?25, 54.4%). Barriers to engaging patients and the public in health research included funding, time, compensation, logistics, recruitment, motivation at both the patient and researcher level, and skills of researchers to engage. Researchers reported an overwhelming need and interest for supports, funding and training to effectively engage patients and the public in health research. Consultation with the patient advisory group provided further insight on study findings and areas for future research. Conclusions:Participating Manitoba health researchers engaged patients and the public in health research at multiple, but typically lower levels of involvement. Findings highlight the barriers to effective, authentic and meaningful patient and public engagement and support the need for targeted training, supports, funding and time for health researchers.

SUBMITTER: Crockett LK

PROVIDER: S-EPMC6781300 | biostudies-literature | 2019

REPOSITORIES: biostudies-literature

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Engaging patients and the public in Health Research: experiences, perceptions and training needs among Manitoba health researchers.

Crockett Leah K LK Shimmin Carolyn C Wittmeier Kristy D M KDM Sibley Kathryn M KM

Research involvement and engagement 20191008

<h4>Background</h4>The significance of patient and public engagement is increasingly recognized in health research, demonstrated by explicit requirements for patient and public engagement by funding agencies and journals. Such requirements have charged health researchers with leading patient and public engagement efforts, but evidence suggests that this practice is still evolving. Little research has explored the experiences and training needs of health researchers. This study aimed to establish ...[more]

PMID: 31608160

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Project description:With the increase in patient and consumer activism through the late twentieth century and into this century, patient roles in research evolved into a new model of research engagement, with patients serving as active advisors and co-leading or leading clinical research. By requiring active engagement of patients and other stakeholders, several government research funders have advanced this model, particularly in Canada, the United States (US), United Kingdom (UK), and Australia. A consortium of individuals from these countries formed a Multi-Stakeholder Engagement (MuSE) consortium to examine critical issues in engaged research, establish consensus on definitions, and provide guidance for the field, beginning with an overview of how to involve stakeholders in health research (Concannon et al. J Gen Intern Med. 2019;34(3):458-463) and continuing here with an examination of definitions of research engagement. The political and advocacy roots of engaged research are reflected in definitions. Engagement is conceptualized with reference to research project goals, from informing specific clinical decisions to informing health-system level decisions. Political and cultural differences across countries are evident. Some of these government funders focus on empirical rather than ethical rationales. In countries with centralized health technology assessment, the link between societal values and engaged research is explicit. Ethical rationales for engagement are explicit in most of the published literature on research engagement. Harmonization of definitions is recommended so that research engagement elements, methods, and outcomes and impacts can be clearly examined and understood, and so that the field of research engagement can proceed from a clear conceptual foundation. Specific recommendations for terminology definitions are provided. Placing engaged research on a continuum from specific clinical decisions to more global public and social justice concerns clarifies the type of engaged research, supports appropriate comparisons, and improves the rigor of engaged research methods. The results help identify knowledge gaps in this growing field.

Project description:BackgroundTo support equity focussed public health policy in low and middle income countries, more evidence and analysis of the social determinants of health inequalities is needed. This requires specific know how among researchers. The INDEPTH Training and Research Centres of Excellence (INTREC) collaboration will develop and provide training on the social determinants of health approach for health researchers from the International Network for the Demographic Evaluation of Populations and Their Health in Low- and Middle-Income Countries (INDEPTH) in Africa and Asia. To identify learning needs among the potential target group, this qualitative study explored what INDEPTH researchers from Ghana, Tanzania, South Africa, Kenya, Indonesia, India, Vietnam, and Bangladesh feel that they want to learn to be able to conduct research on the causes of health inequalities in their country.MethodsUsing an inductive method, online concept-mapping, participants were asked to generate statements in response to the question what background knowledge they would need to conduct research on the causes of health inequalities in their country, to sort those statements into thematic groups, and to rate them in terms of how important it would be for the INTREC program to offer instruction on each of the statements. Statistical techniques were used to structure statements into a thematic cluster map and average importance ratings of statements/clusters were calculated.ResultsOf the 150 invited researchers, 82 participated in the study: 54 from Africa; 28 from Asia. Participants generated 59 statements and sorted them into 6 broader thematic clusters: "assessing health inequalities"; "research design and methods"; "research and policy"; "demography and health inequalities"; "social determinants of health" and "interventions". African participants assigned the highest importance to further training on methods for assessing health inequalities. Asian participants assigned the highest importance to training on research and policy.ConclusionThe identified thematic clusters and statements provide a detailed understanding of what INDEPTH researchers want to learn in order to be able to conduct research on the social determinants of health inequalities. This offers a framework for developing capacity building programs in this emerging field of public health research.

Project description:Introduction and methodAfrica is currently host to a number of international genomics research and biobanking consortia, each with a mandate to advance genomics research and biobanking in Africa. Whilst most of these consortia promise to transform the way international health research is done in Africa, few have articulated exactly how they propose to go about this. In this paper, we report on a qualitative interviewing study in which we involved 17 genomics researchers in Africa. We describe their perceptions and expectations of international genomics research and biobanking initiatives in Africa.ResultsAll interviewees were of the view that externally funded genomics research and biobanking initiatives in Africa, have played a critical role in building capacity for genomics research and biobanking in Africa and in providing an opportunity for researchers in Africa to collaborate and network with other researchers. Whilst the opportunity to collaborate was seen as a benefit, some interviewees stressed the importance of recognizing that these collaborations carry mutual benefits for all partners, including their collaborators in HICs. They also voiced two major concerns of being part of these collaborative initiatives: the possibility of exploitation of African researchers and the non-sustainability of research capacity building efforts. As a way of minimising exploitation, researchers in Africa recommended that genuine efforts be made to create transparent and equitable international health research partnerships. They suggested that this could be achieved through,: having rules of engagement, enabling African researchers to contribute to the design and conduct of international health projects in Africa, and mutual and respectful exchange of experience and capacity between research collaborators. These were identified as hallmarks to equitable international health research collaborations in Africa.ConclusionGenomics research and biobanking initiatives in Africa such as H3Africa have gone some way in defining aspects of fair and equitable research collaborations in Africa. However, they will need to strive at achieving equitable health research collaborations if they truly aim at setting a gold standard for how international health research should be conducted in Africa.

Project description:This article examined how researchers participated in research information management systems (RIMSs), their motivations for participation, and their priorities for those motivations. Profile maintenance, question-answering, and endorsement activities were used to define three cumulatively increasing levels of participation: Readers, Record Managers, and Community Members. Junior researchers were more engaged in RIMSs than were senior researchers. Postdocs had significantly higher odds of endorsing other researchers for skills and being categorized as Community Members than did full and associate professors. Assistant professors were significantly more likely to be Record Managers than were members of any other seniority categories. Finally, researchers from the life sciences showed a significantly higher propensity for being Community Members than Readers and Record Managers when compared with researchers from engineering and the physical sciences, respectively.When performing activities, researchers were motivated by the desire to share scholarship, feel competent, experience a sense of enjoyment, improve their status, and build ties with other members of the community. Moreover, when researchers performed activities that directly benefited other members of a RIMS, they assigned higher priorities to intrinsic motivations, such as perceived self-efficacy, enjoyment, and building community ties. Researchers at different stages of their academic careers and disciplines ranked some of the motivations for engaging with RIMSs differently. The general model of research participation in RIMSs; the relationships among RIMS activities; the motivation scales for activities; and the activity, seniority, and discipline-specific priorities for the motivations developed by this study provide the foundation for a framework for researcher participation in RIMSs. This framework can be used by RIMSs and institutional repositories to develop tools and design mechanisms to increase researchers' engagement in RIMSs.

Project description:Background:There is increasing evidence that research misbehaviour is common, especially the minor forms. Previous studies on research misbehaviour primarily focused on biomedical and social sciences, and evidence from natural sciences and humanities is scarce. We investigated what academic researchers in Amsterdam perceived to be detrimental research misbehaviours in their respective disciplinary fields. Methods:We used an explanatory sequential mixed methods design. First, survey participants from four disciplinary fields rated perceived frequency and impact of research misbehaviours from a list of 60. We then combined these into a top five ranking of most detrimental research misbehaviours at the aggregate level, stratified by disciplinary field. Second, in focus group interviews, participants from each academic rank and disciplinary field were asked to reflect on the most relevant research misbehaviours for their disciplinary field. We used participative ranking methodology inducing participants to obtain consensus on which research misbehaviours are most detrimental. Results:In total, 1080 researchers completed the survey (response rate: 15%) and 61 participated in the focus groups (3 three to 8 eight researchers per group). Insufficient supervision consistently ranked highest in the survey regardless of disciplinary field and the focus groups confirmed this. Important themes in the focus groups were insufficient supervision, sloppy science, and sloppy peer review. Biomedical researchers and social science researchers were primarily concerned with sloppy science and insufficient supervision. Natural sciences and humanities researchers discussed sloppy reviewing and theft of ideas by reviewers, a form of plagiarism. Focus group participants further provided examples of particular research misbehaviours they were confronted with and how these impacted their work as a researcher. Conclusion:We found insufficient supervision and various forms of sloppy science to score highly on aggregate detrimental impact throughout all disciplinary fields. Researchers from the natural sciences and humanities also perceived nepotism to be of major impact on the aggregate level. The natural sciences regarded fabrication of data of major impact as well. The focus group interviews helped to understand how researchers interpreted 'insufficient supervision'. Besides, the focus group participants added insight into sloppy science in practice. Researchers from the natural sciences and humanities added new research misbehaviours concerning their disciplinary fields to the list, such as the stealing of ideas before publication. This improves our understanding of research misbehaviour beyond the social and biomedical fields.

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Engaging patients and the public in Health Research: experiences, perceptions and training needs among Manitoba health researchers.

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Engaging patients and the public in Health Research: experiences, perceptions and training needs among Manitoba health researchers.

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