The ethical challenges and opportunities of implementing engagement strategies in health research

Annals of Epidemiology - Tập 59 - Trang 37-43 - 2021
Jennifer Salerno1,2,3, Karen J. Coleman4, Felica Jones5, Edward S. Peters6
1Aging, Community and Health Research Unit, School of Nursing, Faculty of Health Sciences, McMaster University, Hamilton, ON, Canada
2McMaster Institute for Research on Aging | Collaborative for Health and Aging, Faculty of Health Sciences, McMaster University, Hamilton, ON, Canada
3Department of Health Research Methods, Evidence, and Impact, Faculty of Health Sciences, McMaster University, Hamilton, ON, Canada
4Department of Research and Evaluation, Kaiser Permanente Southern California, Pasadena, CA
5Healthy African American Families II, Los Angeles, CA
6Epidemiology Program, School of Public Health, Louisiana State University, New Orleans, LA

Tài liệu tham khảo

Holroyd-Leduc, 2016, Giving voice to older adults living with frailty and their family caregivers: engagement of older adults living with frailty in research, health care decision making, and in health policy, Res Involv Engagem, 2, 23, 10.1186/s40900-016-0038-7 Concannon, 2012, A new taxonomy for stakeholder engagement in patient-centered outcomes research, J Gen Intern Med, 27, 985, 10.1007/s11606-012-2037-1 Israel, 1998, Review of community-based research: assessing partnership approaches to improve public health, Annu Rev Public Health, 19, 173, 10.1146/annurev.publhealth.19.1.173 Hoekstra, 2020, A review of reviews on principles, strategies, outcomes and impacts of research partnerships approaches: a first step in synthesising the research partnership literature, Health Res Policy Syst, 18, 51, 10.1186/s12961-020-0544-9 Abelson J. Patient engagement and Canada's SPOR initiative: a resource guide for research teams and networks. Available at: https://ossu.ca/wp-content/uploads/OSSU-Patient-Engagement-Resource-Document-May2015.pdf [Accessed March 10, 2021]. Israel B.A., Schulz A.J., Parker E.A., Becker AB, Community-Campus Partnerships for H. Community-based participatory research: policy recommendations for promoting a partnership approach in health research. Educ Health (Abingdon) 2001;14:182–97. Aubin, 2019, The importance of measuring the impact of patient-oriented research, CMAJ, 191, E860, 10.1503/cmaj.190237 Cargo, 2008, The value and challenges of participatory research: strengthening its practice, Annu Rev Public Health, 29, 325, 10.1146/annurev.publhealth.29.091307.083824 Concannon, 2014, A systematic review of stakeholder engagement in comparative effectiveness and patient-centered outcomes research, J Gen Intern Med, 29, 1692, 10.1007/s11606-014-2878-x Wicks, 2018, Patients' roles and rights in research, BMJ, 362, k3193, 10.1136/bmj.k3193 Bell, 2019, Co-building a patient-oriented research curriculum in Canada, Res Involv Engagem, 5, 7, 10.1186/s40900-019-0141-7 Patient-Centered Outcomes Research Institute. PCORI engagement rubric. Available at: http://www.pcori.org/sites/default/files/Engagement-Rubric.pdf [Accessed March 10, 2021]. Canadian Institutes of Health Research. Strategy for patient-oriented research: patient engagement framework. Available at: http://www.cihr-irsc.gc.ca/e/documents/spor_framework-en.pdf [Accessed March 10, 2021]. Minkler, 2010, Linking science and policy through community-based participatory research to study and address health disparities, Am J Public Health, 100, S81, 10.2105/AJPH.2009.165720 Harrington, 2020, Defining patient engagement in research: results of a systematic review and analysis: report of the ISPOR Patient-Centered Special Interest Group, Value Health, 23, 677, 10.1016/j.jval.2020.01.019 McNeil, 2016, Engaging older adults in healthcare research and planning: a realist synthesis, Res Involv Engagem, 2, 10, 10.1186/s40900-016-0022-2 Greenhalgh, 2019, Frameworks for supporting patient and public involvement in research: systematic review and co-design pilot, Health Expect, 22, 785, 10.1111/hex.12888 International Association for Public Participation International Federation. International association for public participation spectrum of public participation. Available at: https://www.iap2.org/page/pillars [Accessed March 10, 2021]. Glanz, 2009, Chapter 6: ethical Issues in the design and conduct of community-based intervention studies, 103 Health Canada and Public Health Agency of Canada. Health Canada and the public health agency of Canada: guidelines on public engagement. Available at: https://www.canada.ca/en/health-canada.html [Accessed March 10, 2021]. Canadian Institutes of Health Research. Draft CIHR ethics guidance for developing research partnerships with patients. Available at: http://www.cihr-irsc.gc.ca/e/documents/ethics_guidance_developing_research-en.pdf [Accessed March 10, 2021]. Doria, 2018, Sharpening the focus: differentiating between focus groups for patient engagement vs. qualitative research, Res Involv Engagem, 4, 19, 10.1186/s40900-018-0102-6 Slack, 2018, Strengthening stakeholder engagement through ethics review in biomedical HIV prevention trials: opportunities and complexities, J Int AIDS Soc, 21, e25172, 10.1002/jia2.25172 Pandya-Wood, 2017, A framework for public involvement at the design stage of NHS health and social care research: time to develop ethically conscious standards, Res Involv Engagem, 3, 6, 10.1186/s40900-017-0058-y Emanuel, 2008, Chapter 11: an ethical framework for biomedical research, 123 Lander, 2019, Involving patients and the public in medical and health care research studies: an exploratory survey on participant recruiting and representativeness from the perspective of study authors, PLoS One, 14, 10.1371/journal.pone.0204187 Marston, 2020, Community participation is crucial in a pandemic, Lancet, 395, 1676, 10.1016/S0140-6736(20)31054-0 Kwon, 2018, Applying a community-based participatory research framework to patient and family engagement in the development of patient-centered outcomes research and practice, Transl Behav Med, 8, 683, 10.1093/tbm/ibx026 Bombard, 2018, Engaging patients to improve quality of care: a systematic review, Implement Sci, 13, 98, 10.1186/s13012-018-0784-z Salerno, 2019, Untangling the ethical intersection of epidemiology, human subjects research, and public health, Ann Epidemiol, 34, 1, 10.1016/j.annepidem.2019.03.009 Claremont Graduate University. IRB training and procedures. Available at: http://www.cgu.edu/pages/1722.asp [Accessed March 10, 2021]. Emanuel, 2000, What makes clinical research ethical?, JAMA, 283, 2701, 10.1001/jama.283.20.2701 Canadian Institutes of Health Research NSaERCoC, and Social Sciences and Humanities Research Council, Tri-Council Policy statement: ethical conduct for research involving humans, 2018. Wiggins, 2019, The rise of citizen science in health and biomedical research, Am J Bioeth, 19, 3, 10.1080/15265161.2019.1619859 NIHR INVOLVE. Public involvement in research and research ethics committee review. Available at: https://www.invo.org.uk/posttypepublication/public-involvement-in-research-and-research-ethics-committee-review/[Accessed March 10, 2021]. Domecq, 2014, Patient engagement in research: a systematic review, BMC Health Serv Res, 14, 89, 10.1186/1472-6963-14-89 Bird, 2020, Preparing for patient partnership: a scoping review of patient partner engagement and evaluation in research, Health Expect, 23, 523, 10.1111/hex.13040 Wallerstein, 2006, Using community-based participatory research to address health disparities, Health Promot Pract, 7, 312, 10.1177/1524839906289376 Vanstone, 2019, Ethical challenges related to patient involvement in health technology assessment, Int J Technol Assess Health Care, 35, 253, 10.1017/S0266462319000382 Patient-Centered Outcomes Research Institute. Methodology 101 training for patients and stakeholders training booklet and resource guide. Available at: https://www.pcori.org/sites/default/files/PCORI-Methodology-101-Training-Booklet-and-Resource-Guide.pdf [Accessed March 10, 2021]. Jones, 2007, Strategies for academic and clinician engagement in community-participatory partnered research, JAMA, 297, 407, 10.1001/jama.297.4.407 Jones, 2018, Commentary: 25 years of community partnered participatory research, Ethn Dis, 28, 291, 10.18865/ed.28.S2.291 Jones, 2009, Begin your partnership: the process of engagement, Ethn Dis, 19 Jones, 2009, The vision, valley, and victory of community engagement, Ethn Dis, 19 Bluthenthal, 2006, Witness for wellness: preliminary findings from a community-academic participatory research mental health initiative, Ethn Dis, 16, S18 Wells, 2013, Community-partnered cluster-randomized comparative effectiveness trial of community engagement and planning or resources for services to address depression disparities, J Gen Intern Med, 28, 1268, 10.1007/s11606-013-2484-3