Exploring Consumers' Motivations and Experiences of Engaging As Partners in Cancer Research

Overview

Journal Patient

Specialty Health Services

Date 2024 Feb 24

PMID 38401039

Authors

Jamie L Waterland

Cassandra Beer

Rowan Forbes Shepherd

Laura E Forrest

Affiliations

Soon will be listed here.

Abstract

Background And Objective: Consumer engagement improves research quality and relevance but can be difficult to implement. This study aimed to explore the motivations and understand the barriers, if any, experienced by consumers before and when partnering with cancer research teams.

Methods: Semi-structured interviews were conducted with consumers and the results analysed thematically. Two groups were recruited: consumers who were members of the consumer registry and patients who did not have previous experience of being a consumer in a researcher partnership.

Results: Twenty-one interviews were conducted with a total of 22 participants aged between 26 and 74 years. Consumers motivation was driven by altruism to help others and personal benefits. Barriers to beginning and maintaining consumer engagement included consumers' perceptions of being appreciated by researchers and meaningful communication between researchers and consumers.

Conclusions: Australian policy has made important steps towards consumer engagement in research. This study showed that demonstrating an appreciation for consumers and effective communication are key areas to consider when designing implementation strategies of these policies in the cancer research space in the future.

References

DeBortoli E, Soyer H, Milne D, Dissanayaka N, Gartner C, Holt J . Measurable outcomes of consumer engagement in health research: A scoping review. Front Public Health. 2022; 10:994547. PMC: 9621387. DOI: 10.3389/fpubh.2022.994547. View

Domecq J, Prutsky G, Elraiyah T, Wang Z, Nabhan M, Shippee N . Patient engagement in research: a systematic review. BMC Health Serv Res. 2014; 14:89. PMC: 3938901. DOI: 10.1186/1472-6963-14-89. View

Schuster A, Hampel H, Paskett E, Bridges J . Rethinking Patient Engagement in Cancer Research. Patient. 2022; 16(2):89-93. PMC: 9911482. DOI: 10.1007/s40271-022-00604-9. View

Greenhalgh T, Hinton L, Finlay T, Macfarlane A, Fahy N, Clyde B . Frameworks for supporting patient and public involvement in research: Systematic review and co-design pilot. Health Expect. 2019; 22(4):785-801. PMC: 6737756. DOI: 10.1111/hex.12888. View

Ocloo J, Matthews R . From tokenism to empowerment: progressing patient and public involvement in healthcare improvement. BMJ Qual Saf. 2016; 25(8):626-32. PMC: 4975844. DOI: 10.1136/bmjqs-2015-004839. View

Staniszewska S, Brett J, Simera I, Seers K, Mockford C, Goodlad S . GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research. Res Involv Engagem. 2017; 3:13. PMC: 5611595. DOI: 10.1186/s40900-017-0062-2. View

Staniszewska S, Brett J, Mockford C, Barber R . The GRIPP checklist: strengthening the quality of patient and public involvement reporting in research. Int J Technol Assess Health Care. 2011; 27(4):391-9. DOI: 10.1017/S0266462311000481. View

McKenzie A, Bowden J, Zalcberg J, Conroy K, Fallon-Ferguson J, Jesudason S . A snapshot of consumer engagement in clinical trials in Australia: results of a national survey of clinical trial networks and research organisations. Res Involv Engagem. 2022; 8(1):3. PMC: 8817464. DOI: 10.1186/s40900-022-00338-w. View

Malterud K, Siersma V, Guassora A . Sample Size in Qualitative Interview Studies: Guided by Information Power. Qual Health Res. 2015; 26(13):1753-1760. DOI: 10.1177/1049732315617444. View

10.

Wiles L, Kay D, Luker J, Worley A, Austin J, Ball A . Consumer engagement in health care policy, research and services: A systematic review and meta-analysis of methods and effects. PLoS One. 2022; 17(1):e0261808. PMC: 8794088. DOI: 10.1371/journal.pone.0261808. View

11.

Gunatillake T, Shadbolt C, Gould D, Lam M, Hearst M, Vleeskens C . Embedding consumer and community involvement within an established research centre: moving from general recommendations to an actionable framework. Res Involv Engagem. 2020; 6:64. PMC: 7592531. DOI: 10.1186/s40900-020-00241-2. View

12.

Esmail L, Moore E, Rein A . Evaluating patient and stakeholder engagement in research: moving from theory to practice. J Comp Eff Res. 2015; 4(2):133-45. DOI: 10.2217/cer.14.79. View

13.

Ayton D, Braaf S, Jones A, Teede H, Gardam M, Bergmeier H . Barriers and enablers to consumer and community involvement in research and healthcare improvement: Perspectives from consumer organisations, health services and researchers in Melbourne, Australia. Health Soc Care Community. 2021; 30(4):e1078-e1091. DOI: 10.1111/hsc.13515. View

14.

Hahn D, Hoffmann A, Felzien M, LeMaster J, Xu J, Fagnan L . Tokenism in patient engagement. Fam Pract. 2016; 34(3):290-295. DOI: 10.1093/fampra/cmw097. View

15.

Costa Alencar A, Selig W, Geissler J, Bereczky T, Ubide A, Haerry D . Adopting recommendations for implementing patient involvement in cancer research: a funder's approach. Res Involv Engagem. 2023; 9(1):6. PMC: 9979457. DOI: 10.1186/s40900-023-00410-z. View

16.

Lawn S . What researchers think of involving consumers in health research. Aust J Prim Health. 2016; 22(6):483-490. DOI: 10.1071/PY15089. View

17.

Thompson J, Barber R, Ward P, Boote J, Cooper C, Armitage C . Health researchers' attitudes towards public involvement in health research. Health Expect. 2009; 12(2):209-20. PMC: 5060486. DOI: 10.1111/j.1369-7625.2009.00532.x. View

18.

Snape D, Kirkham J, Britten N, Froggatt K, Gradinger F, Lobban F . 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(6):e004943. PMC: 4067891. DOI: 10.1136/bmjopen-2014-004943. View

19.

Deber R, Kraetschmer N, Urowitz S, Sharpe N . Patient, consumer, client, or customer: what do people want to be called?. Health Expect. 2005; 8(4):345-51. PMC: 5060307. DOI: 10.1111/j.1369-7625.2005.00352.x. View

20.

Pii K, Schou L, Piil K, Jarden M . Current trends in patient and public involvement in cancer research: A systematic review. Health Expect. 2018; 22(1):3-20. PMC: 6351419. DOI: 10.1111/hex.12841. View