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Australian Health Review Australian Health Review Society
Journal of the Australian Healthcare & Hospitals Association
RESEARCH ARTICLE (Open Access)

Engaging consumers in health research: a narrative review

Jacek Anderst A E , Karena Conroy A B , Greg Fairbrother B C , Laila Hallam B D , Alan McPhail B and Vicki Taylor B C
+ Author Affiliations
- Author Affiliations

A The George Institute for Global Health, Level 5, 1 King Street, Newtown, NSW 2042, Australia. Email: kconroy@georgeinstitute.org.au

B Sydney Local Health District, Level 11, King George V Building, Missenden Road, Camperdown, NSW 2050, Australia. Email: Greg.Fairbrother@health.nsw.gov.au; Laila.Hallam@health.nsw.gov.au; alan.mcphail@gmail.com; vicki.taylor@health.nsw.gov.au

C University of Sydney, Faculty of Medicine and Health, Level 11, King George V Building, Royal Prince Alfred Hospital, Camperdown, NSW 2050, Australia.

D The University of Sydney, Centre for Disability Research and Policy (CDRP), 92–94 Parramatta Road, Camperdown, NSW 2050, Australia.

E Corresponding author. Email: janderst@georgeinstitute.org.au

Australian Health Review 44(5) 806-813 https://doi.org/10.1071/AH19202
Submitted: 9 September 2019  Accepted: 24 February 2020   Published: 12 August 2020

Journal Compilation © AHHA 2020 Open Access CC BY-NC-ND

Abstract

Objective Consumer and community engagement (CCE) in research is increasingly valued in a contemporary healthcare environment that seeks to genuinely partner with consumers and the wider community. Although there is widespread agreement at research governance levels as to the benefits of CCE in research, there is little available research-based guidance as to how best to proceed with CCE organisationally and how to manage and overcome barriers. The aim of this narrative review was to draw together the available research, review findings and relevant governance-related material and to discuss these in light of a case series among research-engaged consumers in order to chart a practical way forward.

Methods A narrative literature review about CCE in research was conducted. Following this, a case series among seven consumers who had been engaged as partners in health research was conducted. Finally, the lived experience of these consumers was explored against the findings of the narrative review.

Results In all, 121 papers were identified and reviewed, 37 of which were used to inform the content of this paper. The most important benefits of CCE to both consumers and healthcare researchers were related to improvements in trust between consumer and researchers, and the increased relevance and ethics of research agendas ultimately pursued. Barriers to CCE were found to be pragmatic, attitudinal and organisational. Enabling factors that capitalise on the benefits and help address the barriers to meaningful CCE are outlined and discussed in light of a case series conducted among research-engaged consumers in Australia and internationally.

Conclusion Best practice standards, organisational commitments and resources are needed to improve the status quo in Australia and to provide health research end-users with research outcomes that better align with their priorities and needs.

What is known about the topic? Consumer and community engagement (CCE) in research is increasing in prevalence and is likely to be beneficial to both consumers and healthcare providers and researchers.

What does this paper add? Following review of the available research findings and governance statements about CCE, enabling strategies are presented in light of a case series among Sydney-based research-engaged consumers.

What are the implications for practitioners? Barriers to consumer and community engagement can be overcome if well understood and tackled organisationally. The potential benefits of shifting to a fully consumer- or community-engaged healthcare research environment are multifactorial and represent a paradigm shift in favour of evidence-based patient and family-centred care.


References

[1]  Delaney LJ. Patient-centred care as an approach to improving health care in Australia. Collegian 2018; 25 119–23.
Patient-centred care as an approach to improving health care in Australia.Crossref | GoogleScholarGoogle Scholar |

[2]  Australian Commission on Safety and Quality in Health Care (ACSQHC). Patient centred care – improving quality and safety through partnership with patients and consumers. Sydney: ACSQHC; 2011. Available at: https://www.safetyandquality.gov.au/publications-and-resources/resource-library/patient-centred-care-improving-quality-and-safety-through-partnerships-patients-and-consumers [verified 8 June 2020].

[3]  Luxford KPD, Dunbar N, Poole N. Patient-centred care: improving quality and safety by focusing care on patients and consumers. Sydney: Australian Commission on Safety and Quality in Health Care; 2010. Available at: https://www.researchgate.net/publication/272790469_Patient-Centred_Care_Improving_Quality_and_Safety_by_Focusing_Care_on_Patients_and_Consumers_Discussion_Paper [verified 8 June 2020].

[4]  Foot C, Gilbert H, Dunn P, Jabbal J, Seale B, Goodrich J, Buck D, Taylor J. People in control of their own health and care: the state of involvement. London: The King’s Fund; 2014. Available at: https://www.kingsfund.org.uk/sites/default/files/field/field_publication_file/people-in-control-of-their-own-health-and-care-the-state-of-involvement-november-2014.pdf [verified 8 June 2020].

[5]  World Health Organization (WHO). WHO global strategy on people-centred and integrated health services: interim report. Geneva: WHO; 2015. Available at: https://www.who.int/servicedeliverysafety/areas/people-centred-care/global-strategy/en/ [verified 8 June 2020].

[6]  Sackett DL, Rosenberg WMC, Muir Gray JA, Haynes RD, Richardson WS. Evidence based medicine: what it is and what it isn’t. BMJ 1996; 312 71
| 8555924PubMed |

[7]  Howe A. Principles of patient and public involvement in primary care research, applied to mental health research. A keynote paper from the EGPRN Autumn Conference 2017 in Dublin. Eur J Gen Pract 2018; 24 167–70.
Principles of patient and public involvement in primary care research, applied to mental health research. A keynote paper from the EGPRN Autumn Conference 2017 in Dublin.Crossref | GoogleScholarGoogle Scholar | 29848192PubMed |

[8]  Gray-Burrows KA, Willis TA, Foy R, Rathfelder M, Bland P, Chin A, Hodgson S, Ibegbuna G, Prestwich G, Samuel K, Wood L, Yaqoob F, McEachan RRC. Role of patient and public involvement in implementation research: a consensus study. BMJ Qual Saf 2018; 27 858–64.
Role of patient and public involvement in implementation research: a consensus study.Crossref | GoogleScholarGoogle Scholar | 29666310PubMed |

[9]  Absolom K, Holch P, Woroncow B, Wright E, Velikova G. Beyond lip service and box ticking: how effective patient engagement is integral to the development and delivery of patient-reported outcomes. Qual Life Res 2015; 24 1077–85.
| 25577498PubMed |

[10]  Australian Government. Medical Research Future Fund: 2018–2020 priorities consultation discussion paper. Canberra: Australian Government; 2018. Available at: https://consultations.health.gov.au/health-economics-and-research-division/medical-research-future-fund-consultation-for-the/supporting_documents/MRFF%20P2%20Consultation%20Discussion%20Paper%20%20FINAL.pdf [verified 8 June 2020].

[11]  Brett J, Staniszewska S, Mockford C, Herron-Marx S, Hughes J, Tysall C, Suleman R. A systematic review of the impact of patient and public involvement on service users, researchers and communities. Patient 2014; 7 387–95.
A systematic review of the impact of patient and public involvement on service users, researchers and communities.Crossref | GoogleScholarGoogle Scholar | 25034612PubMed |

[12]  Happell B, Gordon S, Bocking J, Ellis P, Roper C, Liggins J, Platania-Phung C, Scholz B. How did I not see that? Perspectives of nonconsumer mental health researchers on the benefits of collaborative research with consumers. Int J Ment Health Nurs 2018; 27 1230–9.
How did I not see that? Perspectives of nonconsumer mental health researchers on the benefits of collaborative research with consumers.Crossref | GoogleScholarGoogle Scholar | 29527786PubMed |

[13]  Staniszewska S, Adebajo A, Barber R, Beresford P, Brady L-M, Brett J, Elliot J, Evans D, Haywood KL, Jones D, Mockford C, Nettle M, Rose D, Williamson T. Developing the evidence base of patient and public involvement in health and social care research: the case for measuring impact. Int J Consum Stud 2011; 35 628–32.
Developing the evidence base of patient and public involvement in health and social care research: the case for measuring impact.Crossref | GoogleScholarGoogle Scholar |

[14]  National Health and Medical Research Council (NHMRC). Statement on consumer community involvement in health and medical research. Canberra: NHMRC; 2016. Available at: https://www.nhmrc.gov.au/about-us/publications/statement-consumer-and-community-involvement-health-and-medical-research [verified 8 June 2020].

[15]  Health Consumers Alliance of SA Inc. (HCASA). A consumer and community engagement framework for the South Australian Health and Medical Research Institute. Adelaide: HCASA; 2014. Available at: https://www.sahmri.org/m/downloads/20140606_Health_Consumers_in_Research_Report_FINAL.pdf [verified 8 June 2020].

[16]  Hubbard G, Kidd L, Donaghy E, McDonald C, Kearney N. A review of literature about involving people affected by cancer in research, policy and planning and practice. Patient Educ Couns 2007; 65 21–33.
A review of literature about involving people affected by cancer in research, policy and planning and practice.Crossref | GoogleScholarGoogle Scholar | 16860517PubMed |

[17]  Lawn S. What researchers think of involving consumers in health research. Aust J Prim Health 2016; 22 483–90.
What researchers think of involving consumers in health research.Crossref | GoogleScholarGoogle Scholar | 26750171PubMed |

[18]  Saunders C, Girgis A. Enriching health research through consumer involvement – learning through atypical exemplars. Health Promot J Austr 2011; 22 196–202.
Enriching health research through consumer involvement – learning through atypical exemplars.Crossref | GoogleScholarGoogle Scholar | 22497063PubMed |

[19]  McKenzie AHB, Haines H, Hanley B, Alpers K. Barriers to community involvement in health and medical research. Researcher perspectives on consumer and community involvement in research: a qualitative study. Perth: The University of Western Australia School of Population Health, Telethon Kids Institute and The University of Notre Dame; 2016. Available at: https://www.telethonkids.org.au/globalassets/media/images/pagessections/research/help-shape-our-research/barriers_report_finalweb.pdf [verified 8 June 2020].

[20]  Hewlett S, de Wit M, Richards P, Quest E, Hughes R, Heiberg T, Kirwan J. Patients and professionals as research partners: challenges, practicalities, and benefits. Arthritis Rheum 2006; 55 676–80.
Patients and professionals as research partners: challenges, practicalities, and benefits.Crossref | GoogleScholarGoogle Scholar | 16874772PubMed |

[21]  Barber R, Beresford P, Boote J, Cooper C, Faulkner A. Evaluating the impact of service user involvement on research: a prospective case study. Int J Consum Stud 2011; 35 609–15.
Evaluating the impact of service user involvement on research: a prospective case study.Crossref | GoogleScholarGoogle Scholar |

[22]  Saunders C, Girgis A. Status, challenges and facilitators of consumer involvement in Australian health and medical research. Health Res Policy Syst 2010; 8 34
Status, challenges and facilitators of consumer involvement in Australian health and medical research.Crossref | GoogleScholarGoogle Scholar | 21087513PubMed |

[23]  Staley K. Exploring impact: public involvement in NHS, public health and social care research. Eastleigh UK: National Institute for Health Research; 2009. Available at: https://www.invo.org.uk/posttypepublication/exploring-impact-public-involvement-in-nhs-public-health-and-social-care-research/ [verified 8 June 2020].

[24]  Ennis L, Wykes T. Impact of patient involvement in mental health research: longitudinal study. Br J Psychiatry 2013; 203 381–86.
Impact of patient involvement in mental health research: longitudinal study.Crossref | GoogleScholarGoogle Scholar | 24029538PubMed |

[25]  Sacristán JA, Aguarón A, Avendaño-Solá C, Garrido P, Carrión J, Gutiérrez A, Kroes R, Flores A. Patient involvement in clinical research: why, when, and how. Patient Prefer Adherence 2016; 10 631–40.
Patient involvement in clinical research: why, when, and how.Crossref | GoogleScholarGoogle Scholar | 27175063PubMed |

[26]  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 2015; 18 1151–66.
Patient and service user engagement in research: a systematic review and synthesized framework.Crossref | GoogleScholarGoogle Scholar | 23731468PubMed |

[27]  de Wit M, Abma T, Koelewijn-van Loon M, Collins S, Kirwan J. Involving patient research partners has a significant impact on outcomes research: a responsive evaluation of the international OMERACT conferences. BMJ Open 2013; 3
Involving patient research partners has a significant impact on outcomes research: a responsive evaluation of the international OMERACT conferences.Crossref | GoogleScholarGoogle Scholar | 23975104PubMed |

[28]  Rhodes P, Nocon A, Booth M, Chowdrey MY, Fabian A, Lambert N, Mohammed F, Walgrove T. A service users’ research advisory group from the perspectives of both service users and researchers. Health Soc Care Community 2002; 10 402–9.
A service users’ research advisory group from the perspectives of both service users and researchers.Crossref | GoogleScholarGoogle Scholar | 12390226PubMed |

[29]  Jamieson LM, Paradies YC, Eades S, Chong A, Maple-Brown L, Morris P, Bailie R, Cass A, Roberts-Thomson K, Brown A. Ten principles relevant to health research among Indigenous Australian populations. Med J Aust 2012; 197 16–18.
Ten principles relevant to health research among Indigenous Australian populations.Crossref | GoogleScholarGoogle Scholar | 22762218PubMed |

[30]  Gwynn J, Lock M, Turner N, Dennison R, Coleman C, Kelly B, Wiggers J. Aboriginal and Torres Strait Islander community governance of health research: turning principles into practice. Aust J Rural Health 2015; 23 235–42.
Aboriginal and Torres Strait Islander community governance of health research: turning principles into practice.Crossref | GoogleScholarGoogle Scholar | 25823497PubMed |

[31]  Foroushani PSTJ, Eikli M, Braithwaite J. Consumer and community engagement: a review of the literature. Sydney: UNSW, Agency for Clinical Innovation and Centre for Clinical Governance Research; 2012. Available at: https://www.aci.health.nsw.gov.au/__data/assets/pdf_file/0010/165592/Consumer-and-community-engagement-literature-review.pdf [verified 8 June 2020].

[32]  Snape D, Kirkham J, Britten N, Froggatt K, Gradinger F, Lobban F, Popay J, Wyatt K, Jacoby A. Exploring perceived barriers, drivers, impacts and the need for evaluation of public involvement in health and social care research: a modified Delphi study. BMJ Open 2014; 4
| 24939808PubMed |

[33]  Buck D, Gamble C, Dudley L, Preston J, Hanley B, Williamson PR, Young B, EPIC Patient Advisory Group From plans to actions in patient and public involvement: qualitative study of documented plans and the accounts of researchers and patients sampled from a cohort of clinical trials. BMJ Open 2014; 4
| 25475243PubMed |

[34]  Domecq JP, Prutsky G, Elraiyah T, Wang Z, Nabhan M, Shippee N, Brito JP, Boehmer K, Hasan R, Firwana B, Erwin P, Eton D, Sloan J, Montori V, Asi N, Abu Dabrh AM, Murad MH. Patient engagement in research: a systematic review. BMC Health Serv Res 2014; 14 89
| 24568690PubMed |

[35]  McKenzie AHB. Planning for consumer and community participation in health and medical research: a practical guide for health and medical researchers. Perth: University of Western Australia School of Population Health and Telethon Institute for Child Health Research; 2014.

[36]  Wilson P, Mathie E, Keenan J, McNeilly E, Goodman C, Howe A, Poland F, Staniszewska S, Kendall S, Munday D, Cowe M, Peckham S. ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study. Health Serv Deliv Res 2015; 3.38 1–208.

[37]  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; 12 209–20.
| 19392833PubMed |

[38]  Hughson JA, Woodward-Kron R, Parker A, Hajek J, Bresin A, Knoch U, Phan T, Story D. A review of approaches to improve participation of culturally and linguistically diverse populations in clinical trials. Trials 2016; 17 264

[39]  Bonevski B, Randell M, Paul C, Chapman K, Twyman L, Bryant J, Brozek I, Hughes C. Reaching the hard-to-reach: a systematic review of strategies for improving health and medical research with socially disadvantaged groups. BMC Med Res Methodol 2014; 14 42
Reaching the hard-to-reach: a systematic review of strategies for improving health and medical research with socially disadvantaged groups.Crossref | GoogleScholarGoogle Scholar | 24669751PubMed |

[40]  Todd AL, Nutbeam D. Involving consumers in health research: what do consumers say? Public Health Res Pract 2018; 28
Involving consumers in health research: what do consumers say?Crossref | GoogleScholarGoogle Scholar | 29925089PubMed |

[41]  Saunders C, Crossing S, Girgis A, Butow P, Penman A. Operationalising a model framework for consumer and community participation in health and medical research. Aust New Zealand Health Policy 2007; 4 13
Operationalising a model framework for consumer and community participation in health and medical research.Crossref | GoogleScholarGoogle Scholar | 17592651PubMed |

[42]  Research4Me, Health Consumers NSW. Involving health consumers in health and medical research: enablers and challenges from a consumer perspective. Sydney: Research4Me, Health Consumers NSW; 2017. Available at: http://www.hcnsw.org.au/wp-content/uploads/2018/11/Involving_health_consumers_in_health_and_medical_research_online_print.pdf [verified 8 June 2020].

[43]  Banfield M, Randall R, O’Brien M, Hope S, Gulliver A, Forbes O, Morse AR, Griffiths K. Lived experience researchers partnering with consumers and carers to improve mental health research: reflections from an Australian initiative. Int J Ment Health Nurs 2018; 27 1219–29.
Lived experience researchers partnering with consumers and carers to improve mental health research: reflections from an Australian initiative.Crossref | GoogleScholarGoogle Scholar | 29847015PubMed |

[44]  Cartwright JCS. Patient and public involvement toolkit. Oxford, UK: Blackwell Publishing; 2011.

[45]  National Health and Medical Research Council (NHMRC). Keeping research on track II: a companion document to ethical conduct in research with Aboriginal and Torres Strait Islander Peoples and communities: guidelines for researchers and stakeholders. Canberra: NHMRC; 2018. Available at: https://www.nhmrc.gov.au/about-us/resources/keeping-research-track-ii#block-views-block-file-attachments-content-block-1 [verified 8 June 2020].

[46]  Callander R, Ning L, Crowley A, Childs B, Brisbane P, Salter T. Consumers and carers as partners in mental health research: reflections on the experience of two project teams in Victoria, Australia. Int J Ment Health Nurs 2011; 20 263–73.
Consumers and carers as partners in mental health research: reflections on the experience of two project teams in Victoria, Australia.Crossref | GoogleScholarGoogle Scholar | 21481123PubMed |

[47]  Payne JM, D’Antoine HA, France KE, McKenzie AE, Henley N, Bartu AE, Elliot EJ, Bower C. Collaborating with consumer and community representatives in health and medical research in Australia: results from an evaluation. Health Res Policy Syst 2011; 9 18
Collaborating with consumer and community representatives in health and medical research in Australia: results from an evaluation.Crossref | GoogleScholarGoogle Scholar | 21569591PubMed |

[48]  Mckenzie AHB. Consumer and community participation in health and medical research: a practical guide for health and medical research organisations. Perth: The University of Western Australia School of Population Health and Telethon Institute for Child Health Research; 2007. Available at: https://www.telethonkids.org.au/globalassets/media/images/pagessections/research/help-shape-our-research/the-green-book-mar08.pdf [verified 8 June 2010].

[49]  Bovill M, Bar-Zeev Y, Gruppetta M, O’Mara P, Cowling B, Gould GS. Collective and negotiated design for a clinical trial addressing smoking cessation supports for Aboriginal and Torres Strait Islander mothers in NSW, SA and QLD – developing a pilot study. Aust J Prim Health 2017; 23 497–503.
Collective and negotiated design for a clinical trial addressing smoking cessation supports for Aboriginal and Torres Strait Islander mothers in NSW, SA and QLD – developing a pilot study.Crossref | GoogleScholarGoogle Scholar | 28359352PubMed |