What does patient engagement mean for Canadian National Transplant Research Program Researchers?
Tóm tắt
In recent years, the importance of involving patients in research has been increasingly recognized because it increases the relevance and quality of research, facilitates recruitment, enhances public trust and allows for more effective dissemination of results. The Canadian National Transplant Research Program (CNTRP) is an interdisciplinary research team looking at a variety of issues related to organ and tissue donation and transplantation. The aim of this study was to gather the perspectives of CNTRP researchers on engaging patients in research. We conducted interviews with 10 researchers who attended a national workshop on priority-setting in organ donation and transplant research. The researchers viewed patient engagement in research as necessary and important. They also considered that patients could be engaged at every step of the research process. Participants in this study identified scientific language, time, money, power imbalance, patient selection and risk of tokenism as potential barriers to patient engagement in research. Training, adequate resources and support from the institution were identified as facilitators of patient engagement. This study showed a positive attitude among researchers in the field of organ donation and transplantation. Further studies are needed to study the implementation and impact of patient engagement in research within the CNTRP. Background Involving patients in research has been acknowledged as a way to enhance the quality, relevance and transparency of medical research. No previous studies have looked at researchers’ perspectives on patient engagement (PE) in organ donation and transplant research in Canada. Objective The aim of this study was to gather the perspectives of Canadian National Transplant Research Program (CNTRP) researchers on PE in research. Methods We conducted semi-structured interviews with ten researchers who attended a national workshop on priority-setting in organ donation and transplant research. The interviews were digitally recorded and transcribed verbatim, and the transcripts were subjected to qualitative thematic and content analyses. Results The researchers viewed PE in research as necessary and important. PE was a method to incorporate the voice of the patient. They also considered that patients could be engaged at every step of the research process. The following were identified as the main barriers to PE in research: (i) scientific jargon; (ii) resources (time and money); (iii) tokenism; (iv) power imbalance; and (v) patient selection. Facilitating factors included (i) training for patients and researchers, (ii) adequate resources and (iii) institutional support. Conclusion This study revealed a favourable attitude and willingness among CNTRP researchers to engage and partner with patients in research. Further studies are needed to assess the implementation of PE strategy within the CNTRP and its impact.
Tài liệu tham khảo
Patient Engagement [
http://www.cihr-irsc.gc.ca/e/45851.html
].
Strategy for Patient-Oriented Research - Patient Engagement Framework [
http://www.cihr-irsc.gc.ca/e/48413.html
].
citation_journal_title=Soc Sci Med; citation_title=The experiential knowledge of patients: a new resource for biomedical research?; citation_author=JF Caron-Flinterman, JEW Broerse, JFG Bunder; citation_volume=60; citation_publication_date=2005; citation_pages=2575-2584; citation_doi=10.1016/j.socscimed.2004.11.023; citation_id=CR3
citation_title=Engaging patients in healthcare; citation_publication_date=2011; citation_id=CR4; citation_author=A Coulter; citation_publisher=Open University Press
citation_journal_title=BMJ; citation_title=Patients are experts in their own field; citation_author=I Kennedy; citation_volume=326; citation_publication_date=2003; citation_pages=1276-1277; citation_doi=10.1136/bmj.326.7402.1276; citation_id=CR5
Schipper K, Abma TA. Coping, family and mastery: top priorities for social science research by patients with chronic kidney disease. Nephrology, Dialysis & Transplantation 2011. 2011;(26):3189–95.
citation_journal_title=J Gn Intern Med; citation_title=A Systematic Review Of approaches for engaging patients for research on rare diseases; citation_author=LP Forsythe, V Szydlowski, MH Murad, S Ip, Z Wang, TA Elraiyah, R Fleurence, DH Hickam; citation_volume=29; citation_issue=Suppl 3; citation_publication_date=2014; citation_pages=S788-S800; citation_doi=10.1007/s11606-014-2895-9; citation_id=CR7
citation_title=Methods for involving patients in topic generation for patient-centered comparative effectiveness research - an international perspective; citation_publication_date=2012; citation_id=CR8; citation_author=P Nass; citation_author=S Levine; citation_author=C Yancy; citation_publisher=Patient-Centered Outcomes Research Institute
citation_journal_title=J Gen Intern Med; citation_title=Patient and stakeholder engagement in the PCORI pilot projects: description and lessons learned; citation_author=LP Forsythe, LE Ellis, L Edmundson, R Sabharwal, A Rein, K Konopka, L Frank; citation_volume=31; citation_issue=1; citation_publication_date=2016; citation_pages=13-21; citation_doi=10.1007/s11606-015-3450-z; citation_id=CR9
Transforming transplant research in Canada [
http://www.cntrp.ca/#!about/c4nz
].
citation_journal_title=Transplantation; citation_title=Transdisciplinary tour-de-force: the Canadian National Transplant Research Program; citation_author=M Hébert, D Hartell, L West; citation_volume=1000; citation_issue=3; citation_publication_date=2016; citation_pages=466-470; citation_doi=10.1097/TP.0000000000001138; citation_id=CR11
citation_journal_title=Transplantation Direct; citation_title=Perspectives of patients, caregivers and researchers on research priorities in donation and transplantation in Canada: a pilot workshop; citation_author=J Allard, C Durand, S Anthony, V Dumez, D Hartell, M-J Hébert, LJ West, L Wright, M-C Fortin; citation_volume=3; citation_issue=2; citation_publication_date=2017; citation_doi=10.1097/TXD.0000000000000639; citation_id=CR12
citation_journal_title=Health Expect; citation_title=Health researchers’ attitudes towards public involvement in health research; citation_author=J Thompson, R Barber, PR Ward, JD Boote, CL Cooper, CJ Armitage, G Jones; citation_volume=12; citation_issue=2; citation_publication_date=2009; citation_pages=209-220; citation_id=CR13
citation_journal_title=International Journal for Quality in Healthcare; citation_title=Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups; citation_author=A Tong, P Sainsbury, J Craig; citation_volume=19; citation_issue=6; citation_publication_date=2007; citation_pages=349-357; citation_doi=10.1093/intqhc/mzm042; citation_id=CR14
citation_title=Qualitative methods for Health Research; citation_publication_date=2004; citation_id=CR15; citation_author=J Green; citation_author=N Thorogood; citation_publisher=Sage Publications
citation_title=Qualitative data analysis: a source book of new methods; citation_publication_date=1984; citation_id=CR16; citation_author=MB Miles; citation_author=MA Huberman; citation_publisher=SAGE publications
citation_journal_title=Patient; citation_title=A Systematic Review Of the impact of patient and public Invovlement on service users, researchers and communities; citation_author=J Brett, S Staniszewska, C Mockford, S Herron-Marx, J Hughes, C Tysall, R Suleman; citation_volume=7; citation_issue=4; citation_publication_date=2014; citation_pages=387-395; citation_doi=10.1007/s40271-014-0065-0; citation_id=CR17
Domecq JP, Prutsky G, Elraiyah T, Wang Z, Nabhan M, Shippee N, Brito JP, Boehmer K, Hasan R, BFirwana B, et al. Patient engagement in research: a systematic review. BMC Health Serv Res. 2014;14(89)
Hahn D, Hoffmann A, Felzien M, LeMaster J, Xu J, Fagnan L. Tokenism in patient engagement. Fam Pract. 2016;
citation_journal_title=Value Health; citation_title=Emerging guidelines for patient engagement in research; citation_author=JR Kirwan, M De Wit, L Frank, K Haywood, S Salek, S Brace-McDonnell, A Lyddiatt, S Barbic, J Alonso, F Guillemin; citation_volume=20; citation_issue=3; citation_publication_date=2017; citation_pages=481-486; citation_doi=10.1016/j.jval.2016.10.003; citation_id=CR20
citation_journal_title=Qual Health Res; citation_title=Patients as Partners in Responsive Research: methodological notions for collaborations in mixed research teams; citation_author=TA Abma, CJ Nierse, GAM Widdershoven; citation_volume=19; citation_publication_date=2009; citation_pages=401-415; citation_doi=10.1177/1049732309331869; citation_id=CR21
Brett J, Staniszewska S, Mockford C, Herron-Marx S, Hughes J, Tysall C, Suleman R. Mapping the impact of patient and public involvement on health and social care research: a systematic review. Health Expect. 2012:1–12.
Staley K: "Is it worth doing?" Measuring the impact of patient and public involvement Research Involvement and Engagement 2015, 1.