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BMC Health Services Research
Published in: BMC Health Services Research 1/2014

Open Access 01-12-2014 | Research article

Patient engagement in research: a systematic review

Authors: Juan Pablo Domecq, Gabriela Prutsky, Tarig Elraiyah, Zhen Wang, Mohammed Nabhan, Nathan Shippee, Juan Pablo Brito, Kasey Boehmer, Rim Hasan, Belal Firwana, Patricia Erwin, David Eton, Jeff Sloan, Victor Montori, Noor Asi, Abd Moain Abu Dabrh, Mohammad Hassan Murad

Published in: BMC Health Services Research | Issue 1/2014

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Abstract

Background

A compelling ethical rationale supports patient engagement in healthcare research. It is also assumed that patient engagement will lead to research findings that are more pertinent to patients’ concerns and dilemmas. However; it is unclear how to best conduct this process. In this systematic review we aimed to answer 4 key questions: what are the best ways to identify patient representatives? How to engage them in designing and conducting research? What are the observed benefits of patient engagement? What are the harms and barriers of patient engagement?

Methods

We searched MEDLINE, EMBASE, PsycInfo, Cochrane, EBSCO, CINAHL, SCOPUS, Web of Science, Business Search Premier, Academic Search Premier and Google Scholar. Included studies were published in English, of any size or design that described engaging patients or their surrogates in research design. We conducted an environmental scan of the grey literature and consulted with experts and patients. Data were analyzed using a non-quantitative, meta-narrative approach.

Results

We included 142 studies that described a spectrum of engagement. In general, engagement was feasible in most settings and most commonly done in the beginning of research (agenda setting and protocol development) and less commonly during the execution and translation of research. We found no comparative analytic studies to recommend a particular method. Patient engagement increased study enrollment rates and aided researchers in securing funding, designing study protocols and choosing relevant outcomes. The most commonly cited challenges were related to logistics (extra time and funding needed for engagement) and to an overarching worry of a tokenistic engagement.

Conclusions

Patient engagement in healthcare research is likely feasible in many settings. However, this engagement comes at a cost and can become tokenistic. Research dedicated to identifying the best methods to achieve engagement is lacking and clearly needed.
Appendix
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Literature
1.
Brett J, Staniszewska S, Mockford C, Seers K, Herron-Marx S, Bayliss H: The PIRICOM Study: A Systematic Review of the Conceptualisation, Measurement, Impact and Outcomes of Patients and Public Involvement in Health and Social Care Research. 2010, Warwick: University of Warwick, http://​wrap.​warwick.​ac.​uk/​47235/​.
2.
Thompson J, Barber R, Ward PR, Boote JD, Cooper CL, Armitage CJ, Jones G: Health researchers’ attitudes towards public involvement in health research. Health Expect. 2009, 12 (2): 209-220.PubMed
3.
Viswanathan M, Ammerman A, Eng E, Garlehner G, Lohr KN, Griffith D, Rhodes S, Samuel-Hodge C, Maty S, Lux L, Webb L, Sutton SF, Swinson T, Jackman A, Whitener L: Community-based participatory research: assessing the evidence. Evid Rep Technol Assess (Summ). 2004, 99: 1-8.
4.
Sullivan P, Goldmann D: The promise of comparative effectiveness research. JAMA. 2011, 305 (4): 400-401. 10.1001/jama.2011.12.CrossRefPubMed
5.
6.
7.
8.
Nilsen ES, Myrhaug HT, Johansen M, Oliver S, Oxman AD: Methods of consumer involvement in developing healthcare policy and research, clinical practice guidelines and patient information material. Cochrane Database Syst Rev. 2006, 3: CD004563.PubMed
9.
Mockford C, Staniszewska S, Griffiths F, Herron-Marx S: The impact of patient and public involvement on UK NHS health care: a systematic review. Int J Qual Health Care. 2012, 24 (1): 28-38. 10.1093/intqhc/mzr066.CrossRefPubMed
10.
Oliver S, Clarke-Jones L, Rees R, Milne R, Buchanan P, Gabbay J, Gyte G, Oakley A, Stein K: Involving consumers in research and development agenda setting for the NHS: developing an evidence-based approach. Health Technol Assess. 2004, 8 (15): 1-148.CrossRefPubMed
11.
Moher D, Liberati A, Tetzlaff J, Altman DG: Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. Ann Intern Med. 2009, 151 (4): 264-269. 10.7326/0003-4819-151-4-200908180-00135. W264CrossRefPubMed
12.
13.
Viera AJ, Garrett JM: Understanding interobserver agreement: the kappa statistic. Fam Med. 2005, 37 (5): 360-363.PubMed
14.
Greenhalgh T, Robert G, Macfarlane F, Bate P, Kyriakidou O, Peacock R: Storylines of research in diffusion of innovation: a meta-narrative approach to systematic review. Soc Sci Med. 2005, 61 (2): 417-430. 10.1016/j.socscimed.2004.12.001.CrossRefPubMed
15.
Wong G, Greenhalgh T, Westhorp G, Buckingham J, Pawson R: RAMESES publication standards: meta-narrative reviews. BMC Med. 2013, 11: 20-10.1186/1741-7015-11-20.CrossRefPubMedPubMedCentral
16.
Tong A, Flemming K, McInnes E, Oliver S, Craig J: Enhancing transparency in reporting the synthesis of qualitative research: ENTREQ. BMC Med Res Methodol. 2012, 12: 181-10.1186/1471-2288-12-181.CrossRefPubMedPubMedCentral
17.
Shippee ND, Domecq Garces JP, Prutsky Lopez GJ, Wang Z, Elraiyah TA, Nabhan M, Brito JP, Boehmer K, Hasan R, Firwana B, Erwin PJ, Montori VM, Murad MH: Patient and service user engagement in research: a systematic review and synthesized framework. Health Expect. 2013, doi: 10.1111/hex.12090
18.
19.
Campbell R, Pound P, Pope C, Britten N, Pill R, Morgan M, Donovan J: Evaluating meta-ethnography: a synthesis of qualitative research on lay experiences of diabetes and diabetes care. Soc Sci Med. 2003, 56 (4): 671-684. 10.1016/S0277-9536(02)00064-3.CrossRefPubMed
20.
Boote J, Baird W, Beecroft C: Public involvement at the design stage of primary health research: a narrative review of case examples. Health Policy. 2010, 95 (1): 10-23. 10.1016/j.healthpol.2009.11.007.CrossRefPubMed
21.
Stewart RJ, Caird J, Oliver K, Oliver S: Patients’ and clinicians’ research priorities. Health Technol Assess. 2011, 14 (4): 439-448.
22.
Legare F, Boivin A, van der Weijden T, Pakenham C, Burgers J, Legare J, St-Jacques S, Gagnon S: Patient and public involvement in clinical practice guidelines: a knowledge synthesis of existing programs. Med Decis Making. 2011, 31 (6): E45-E74. 10.1177/0272989X11424401.CrossRefPubMed
23.
Hussain-Gambles M, Leese B, Atkin K, Brown J, Mason S, Tovey P: Involving South Asian patients in clinical trials. 2004, 8 ((42):iii): 1-109.
24.
Caron-Flinterman JF, Broerse JE, Teerling J, Bunders JF: Patients’ priorities concerning health research: the case of asthma and COPD research in the Netherlands. Health Expect. 2005, 8 (3): 253-263. 10.1111/j.1369-7625.2005.00337.x.CrossRefPubMed
25.
Jones JM, Nyhof-Young J, Moric J, Friedman A, Wells W, Catton P: Identifying motivations and barriers to patient participation in clinical trials. J Cancer Educ. 2006, 21 (4): 237-242.CrossRefPubMed
26.
Murad MH, Shah ND, Van Houten HK, Ziegenfuss JY, Deming JR, Beebe TJ, Smith SA, Guyatt GH, Montori VM: Individuals with diabetes preferred that future trials use patient-important outcomes and provide pragmatic inferences. J Clin Epidemiol. 2011, 64 (7): 743-748. 10.1016/j.jclinepi.2010.08.005.CrossRefPubMed
27.
Swartz LJ, Callahan KA, Butz AM, Rand CS, Kanchanaraksa S, Diette GB, Krishnan JA, Breysse PN, Buckley TJ, Mosley AM, Eggleston PA: Methods and issues in conducting a community-based environmental randomized trial. Environ Res. 2004, 95 (2): 156-165. 10.1016/j.envres.2003.08.003.CrossRefPubMed
28.
Crowe JL, Keifer MC, Salazar MK: Striving to provide opportunities for farm worker community participation in research. J Agric Saf Health. 2008, 14 (2): 205-219.CrossRefPubMed
29.
Shagi C, Vallely A, Kasindi S, Chiduo B, Desmond N, Soteli S, Kavit N, Vallely L, Lees S, Hayes R, Ross D: A model for community representation and participation in HIV prevention trials among women who engage in transactional sex in Africa. AIDS Care. 2008, 20 (9): 1039-1049. 10.1080/09540120701842803.CrossRefPubMed
30.
Edwards V, Wyatt K, Logan S, Britten N: Consulting parents about the design of a randomized controlled trial of osteopathy for children with cerebral palsy. Health Expect. 2011, 14 (4): 429-438. 10.1111/j.1369-7625.2010.00652.x.CrossRefPubMed
31.
Shah SG, Robinson I: Benefits of and barriers to involving users in medical device technology development and evaluation. Int J Technol Assess Health Care. 2007, 23 (1): 131-137.CrossRefPubMed
32.
Oliver SR, Rees RW, Clarke-Jones L, Milne R, Oakley AR, Gabbay J, Stein K, Buchanan P, Gyte G: A multidimensional conceptual framework for analysing public involvement in health services research. 2008, 11 (1): 72-84.
33.
Minogue V, Girdlestone J: Building capacity for service user and carer involvement in research: the implications and impact of best research for best health. 2010, 23 (4): 422-435.
34.
Smith YR, Johnson AM, Newman LA, Greene A, Johnson TRB, Rogers JL: Perceptions of clinical research participation among African American women. 2007, 16 (3): 423-428.
35.
Decker M, Hemmerling A, Lankoande F: Women front and center: the opportunities of involving women in participatory health research worldwide. 2010, 19 (11): 2109-2114.
36.
Stewart P, Shibasaki S, Anderson I, Pyett P, Dunbar T, Devitt J: Aboriginal and Torres Strait Islander participation in ethical review of health research. 2006, 30 (3): 291-292.
37.
Evans S, Corley M, Corrie M, Costley K, Donald C: Evaluating services in partnership with older people: exploring the role of ‘community researchers’. 2011, 15 (1): 26-33.
38.
McLaughlin H: Involving young service users as co-researchers: possibilities, benefits and costs. Br J Soc Work. 2006, 36 (8): 1395-1410.CrossRef
39.
Johnson K: No longer researching about us without us: a researcher’s reflection on rights and inclusive research in Ireland. 2009, 37 (4): 250-256.
40.
Walmsley J: Involving users with learning difficulties in health improvement: lessons from inclusive learning disability research. 2004, 11 (1): 54-64.
41.
Kreis J, Puhan MA, Schunemann HJ, Dickersin K: Consumer involvement in systematic reviews of comparative effectiveness research. Health Expect. 2013, 16 (4): 323-337. 10.1111/j.1369-7625.2011.00722.x.CrossRefPubMed
42.
Wyatt KD, Stuart LM, Brito JP, Carranza Leon B, Domecq JP, Prutsky GJ, Egginton JS, Calvin AD, Shah ND, Murad MH, Montori VM: Out of context: clinical practice guidelines and patients with multiple chronic conditions: a systematic review. Med Care. 2013, [Epub ahead of print]
43.
Montori VM, Brito JP, Murad MH: The optimal practice of evidence-based medicine: incorporating patient preferences in practice guidelines. JAMA. 2013, 310 (23): 2503-2504. 10.1001/jama.2013.281422.CrossRefPubMed
44.
Murad MH, Montori VM, Guyatt GH: Incorporating patient preferences in evidence-based medicine. JAMA. 2008, 300 (21): 2483-author reply 2483–2484CrossRefPubMed
Metadata
Title
Patient engagement in research: a systematic review
Authors
Juan Pablo Domecq
Gabriela Prutsky
Tarig Elraiyah
Zhen Wang
Mohammed Nabhan
Nathan Shippee
Juan Pablo Brito
Kasey Boehmer
Rim Hasan
Belal Firwana
Patricia Erwin
David Eton
Jeff Sloan
Victor Montori
Noor Asi
Abd Moain Abu Dabrh
Mohammad Hassan Murad
Publication date
01-12-2014
Publisher
BioMed Central
Published in
BMC Health Services Research / Issue 1/2014
Electronic ISSN: 1472-6963
DOI
https://doi.org/10.1186/1472-6963-14-89

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