Register      Login
Australian Journal of Primary Health Australian Journal of Primary Health Society
The issues influencing community health services and primary health care
RESEARCH ARTICLE (Open Access)

Consumer engagement critical to success in an Australian research project: reflections from those involved

Anneliese J. Synnot A B H , Catherine L. Cherry C D E , Michael P. Summers A , Rwth Stuckey F , Catherine A. Milne G , Dianne B. Lowe A and Sophie J. Hill A
+ Author Affiliations
- Author Affiliations

A Centre for Health Communication and Participation, School of Psychology and Public Health, College of Science, Health and Engineering, La Trobe University, Kingsbury Drive, Bundoora, Vic. 3068, Australia.

B Cochrane Australia, School of Public Health and Preventive Medicine, Monash University, Level 4, 553 St Kilda Road, Melbourne, Vic. 3004, Australia.

C Centre for Biomedical Research, Burnet Institute 85 Commercial Road, Melbourne, Vic. 3004, Australia.

D Department of Infectious Diseases, The Alfred Hospital and Monash University, The Burnet Institute, 85 Commercial Road, Melbourne, Vic. 3004, Australia.

E Faculty of Health Sciences, University of the Witwatersrand, Private Bag 3, WITS 2050, Johannesburg, South Africa.

F Centre for Ergonomics and Human Factors, School of Psychology and Public Health, College of Science, Health and Engineering, La Trobe University, Kingsbury Drive, Bundoora, Melbourne, Vic. 3086, Australia.

G Sydney Health Ethics, School of Public Health, University of Sydney, Sydney, NSW 2006, Australia.

H Corresponding author. Email: a.synnot@latrobe.edu.au

Australian Journal of Primary Health 24(3) 197-203 https://doi.org/10.1071/PY17107
Submitted: 10 August 2017  Accepted: 8 January 2018   Published: 7 June 2018

Journal compilation © La Trobe University 2018 Open Access CC BY-NC-ND

Abstract

This paper describes the people, activities and methods of consumer engagement in a complex research project, and reflects on the influence this had on the research and people involved, and enablers and challenges of engagement. The 2.5-year Integrating and Deriving Evidence Experiences and Preferences (IN-DEEP) study was conducted to develop online consumer summaries of multiple sclerosis (MS) treatment evidence in partnership with a three-member consumer advisory group. Engagement methods included 6-monthly face-to-face meetings and email contact. Advisory group members were active in planning, conduct and dissemination and translational phases of the research. Engaging consumers in this way improved the quality of the research process and outputs by: being more responsive to, and reflective of, the experiences of Australians with MS; expanding the research reach and depth; and improving the researchers’ capacity to manage study challenges. Advisory group members found contributing their expertise to MS research satisfying and empowering, whereas researchers gained confidence in the research direction. Managing the unpredictability of MS was a substantive challenge; the key enabler was the ‘brokering role’ of the researcher based at an MS organisation. Meaningfully engaging consumers with a range of skills, experiences and networks can make important and unforeseen contributions to research success.

Additional keywords: consumer participation, multiple sclerosis, online health information, patient and public involvement, research involvement.


References

Boote J, Wong R, Booth A (2015) ‘Talking the talk or walking the walk?’ A bibliometric review of the literature on public involvement in health research published between 1995 and 2009. Health Expectations 18, 44–57.
‘Talking the talk or walking the walk?’ A bibliometric review of the literature on public involvement in health research published between 1995 and 2009.Crossref | GoogleScholarGoogle Scholar |

Brett J, Staniszewska S, Mockford C, Herron-Marx S, Hughes J, Tysall C, Suleman R (2014a) Mapping the impact of patient and public involvement on health and social care research: a systematic review. Health Expectations 17, 637–650.
Mapping the impact of patient and public involvement on health and social care research: a systematic review.Crossref | GoogleScholarGoogle Scholar |

Brett J, Staniszewska S, Mockford C, Herron-Marx S, Hughes J, Tysall C, Suleman R (2014b) A systematic review of the impact of patient and public involvement on service users, researchers and communities. Patient 7, 387–395.
A systematic review of the impact of patient and public involvement on service users, researchers and communities.Crossref | GoogleScholarGoogle Scholar |

Buck D, Gamble C, Dudley L, Preston J, Hanley B, Williamson PR, Young B (2014) 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 4, e006400
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.Crossref | GoogleScholarGoogle Scholar |

Cancer Australia and Cancer Voices Australia (2011) National Framework for Consumer Involvement in Cancer Control. Cancer Australia, Canberra, ACT, Australia) Available at https://canceraustralia.gov.au/sites/default/files/publications/national_consumer_framework_web_504af020f2184.pdf [Verified 8 February 2018]

Canadian Institutes of Health Research (2014) ‘Health Research in Canada and You.’ (CIHR: Ontario, Canada)

Concannon TW, Meissner P, Grunbaum JA, McElwee N, Guise J-M, Santa J, Conway PH, Daudelin D, Morrato EH, Leslie LK (2012) A new taxonomy for stakeholder engagement in patient-centered outcomes research. Journal of General Internal Medicine 27, 985–991.
A new taxonomy for stakeholder engagement in patient-centered outcomes research.Crossref | GoogleScholarGoogle Scholar |

Concannon TW, Fuster M, Saunders T, Patel K, Wong JB, Leslie LK, Lau J (2014) A systematic review of stakeholder engagement in comparative effectiveness and patient-centered outcomes research. Journal of General Internal Medicine 29, 1692–1701.
A systematic review of stakeholder engagement in comparative effectiveness and patient-centered outcomes research.Crossref | GoogleScholarGoogle Scholar |

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, Dabrh AM, Murad MH (2014) Patient engagement in research: a systematic review. BMC Health Services Research 14, 89
Patient engagement in research: a systematic review.Crossref | GoogleScholarGoogle Scholar |

Dudley L, Gamble C, Preston J, Buck D, The EPIC Patient Advisory Group Hanley B, Williamson P, Young B (2015) What difference does patient and public involvement make and what are its pathways to impact? Qualitative study of patients and researchers from a cohort of randomised clinical trials. PLoS One 10, e0128817
What difference does patient and public involvement make and what are its pathways to impact? Qualitative study of patients and researchers from a cohort of randomised clinical trials.Crossref | GoogleScholarGoogle Scholar |

Edelman N, Barron D (2016) Evaluation of public involvement in research: time for a major re-think? Journal of Health Services Research & Policy 21, 209–211.
Evaluation of public involvement in research: time for a major re-think?Crossref | GoogleScholarGoogle Scholar |

Forsythe LP, Ellis LE, Edmundson L, Sabharwal R, Rein A, Konopka K, Frank L (2016) Patient and stakeholder engagement in the PCORI pilot projects: description and lessons learned. Journal of General Internal Medicine 31, 13–21.
Patient and stakeholder engagement in the PCORI pilot projects: description and lessons learned.Crossref | GoogleScholarGoogle Scholar |

Friedemann P, Wattjes M (2014) Chronic cerebrospinal venous insufficiency in multiple sclerosis: the final curtain. Lancet 383, 106–108.
Chronic cerebrospinal venous insufficiency in multiple sclerosis: the final curtain.Crossref | GoogleScholarGoogle Scholar |

Heaton J, Day J, Britten N (2016) Collaborative research and the co-production of knowledge for practice: an illustrative case study. Implementation Science 11, 20
Collaborative research and the co-production of knowledge for practice: an illustrative case study.Crossref | GoogleScholarGoogle Scholar |

Hill S, Filippini G, Synnot A, Summers M, Beecher D, Colombo C, Mosconi P, Battaglia M, Shapland S, Osborne R, Hawkins M (2012) Presenting evidence-based health information for people with multiple sclerosis: the IN-DEEP project protocol. BMC Medical Informatics and Decision Making 12, 20
Presenting evidence-based health information for people with multiple sclerosis: the IN-DEEP project protocol.Crossref | GoogleScholarGoogle Scholar |

IAP2 Australasia (2015) ‘Quality Assurance Standard for Community and Stakeholder Engagement.’ (International Association for Public Participation Australasia (IAP2): Wollongong, NSW, Australia)

INVOLVE (2012) ‘Briefing Notes for Researchers: Involving the Public in NHS, Public Health and Social Care Research.’ (INVOLVE: Eastleigh, UK)

Lawn S (2016) What researchers think of involving consumers in health research. Australian Journal of Primary Health 22, 483–490.
What researchers think of involving consumers in health research.Crossref | GoogleScholarGoogle Scholar |

Long JC, Cunningham FC, Braithwaite J (2013) Bridges, brokers and boundary spanners in collaborative networks: a systematic review. BMC Health Services Research 13, 158
Bridges, brokers and boundary spanners in collaborative networks: a systematic review.Crossref | GoogleScholarGoogle Scholar |

Maguire K, Britten N (2017) ‘How can anybody be representative for those kind of people?’ Forms of patient representation in health research, and why it is always contestable. Social Science & Medicine 183, 62–69.
‘How can anybody be representative for those kind of people?’ Forms of patient representation in health research, and why it is always contestable.Crossref | GoogleScholarGoogle Scholar |

Nasser M, Clarke M, Chalmers I, Brurberg KG, Nykvist H, Lund H, Glasziou P (2017) What are funders doing to minimise waste in research? Lancet 389, 1006–1007.
What are funders doing to minimise waste in research?Crossref | GoogleScholarGoogle Scholar |

National Health and Medical Research Council and Consumers Health Forum of Australia (2016) Statement on consumer and community involvement in health and medical research. National Health and Medical Research Council, Canberra, ACT, Australia.

Ocloo J, Matthews R (2016) From tokenism to empowerment: progressing patient and public involvement in healthcare improvement. BMJ Quality & Safety 25, 626–632.
From tokenism to empowerment: progressing patient and public involvement in healthcare improvement.Crossref | GoogleScholarGoogle Scholar |

Sarrami-Foroushani P, Travaglia J, Debono D, Braithwaite J (2014a) Implementing strategies in consumer and community engagement in health care: results of a large-scale, scoping meta-review. BMC Health Services Research 14, 402
Implementing strategies in consumer and community engagement in health care: results of a large-scale, scoping meta-review.Crossref | GoogleScholarGoogle Scholar |

Sarrami-Foroushani P, Travaglia J, Debono D, Braithwaite J (2014b) Key concepts in consumer and community engagement: a scoping meta-review. BMC Health Services Research 14, 250
Key concepts in consumer and community engagement: a scoping meta-review.Crossref | GoogleScholarGoogle Scholar |

Saunders C, Girgis A (2010) Status, challenges and facilitators of consumer involvement in Australian health and medical research. Health Research Policy and Systems 8, 34
Status, challenges and facilitators of consumer involvement in Australian health and medical research.Crossref | GoogleScholarGoogle Scholar |

Shen S, Doyle-Thomas KAR, Beesley L, Karmali A, Williams L, Tanel N, McPherson AC (2017) How and why should we engage parents as co-researchers in health research? A scoping review of current practices. Health Expectations 20, 543–554.
How and why should we engage parents as co-researchers in health research? A scoping review of current practices.Crossref | GoogleScholarGoogle Scholar |

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 (2015) Patient and service user engagement in research: a systematic review and synthesized framework. Health Expectations 18, 1151–1166.
Patient and service user engagement in research: a systematic review and synthesized framework.Crossref | GoogleScholarGoogle Scholar |

Staley K, Buckland SA, Hayes H, Tarpey M (2014) ‘The missing links’: understanding how context and mechanism influence the impact of public involvement in research. Health Expectations 17, 755–764.
‘The missing links’: understanding how context and mechanism influence the impact of public involvement in research.Crossref | GoogleScholarGoogle Scholar |

Staniszewska S, Brett J, Mockford C, Barber R (2011) The GRIPP checklist: strengthening the quality of patient and public involvement reporting in research. International Journal of Technology Assessment in Health Care 27, 391–399.
The GRIPP checklist: strengthening the quality of patient and public involvement reporting in research.Crossref | GoogleScholarGoogle Scholar |

Staniszewska S, Brett J, Simera I, Seers K, Mockford C, Goodlad S, Altman DG, Moher D, Barber R, Denegri S, Entwistle A, Littlejohns P, Morris C, Suleman R, Thomas V, Tysall C (2017) GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research. BMJ 358, j3453
GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research.Crossref | GoogleScholarGoogle Scholar |

Synnot AJ, Hill SJ, Garner KA, Summers MP, Filippini G, Osborne RH, Shapland SD, Colombo C, Mosconi P (2016) Online health information seeking: how people with multiple sclerosis find, assess and integrate treatment information to manage their health. Health Expectations 19, 727–737.
Online health information seeking: how people with multiple sclerosis find, assess and integrate treatment information to manage their health.Crossref | GoogleScholarGoogle Scholar |

Synnot AJ, Hawkins M, Merner BA, Summers MP, Filippini G, Osborne RH, Shapland SDP, Cherry CL, Stuckey R, Milne CA, Mosconi P, Colombo C, Hill SJ (2018) Producing an evidence‐based treatment information website in partnership with people affected by multiple sclerosis. Health Science Reports 1, e24
Producing an evidence‐based treatment information website in partnership with people affected by multiple sclerosis.Crossref | GoogleScholarGoogle Scholar |