Long‐term consumer involvement in cancer research: Working towards partnership

Autor:	Elle Ackland, Jon Emery, Sophie A. Chima, Kristi M Milley, Jennifer McIntosh
Jazyk:	angličtina
Rok vydání:	2021
Předmět:	Medicine (General) media_common.quotation_subject Best practice Personal life Organizational commitment Consumer education qualitative interviews 03 medical and health sciences 0302 clinical medicine R5-920 Neoplasms Humans 030212 general & internal medicine Qualitative Research media_common Scope (project management) business.industry 030503 health policy & services Communication Public Health Environmental and Occupational Health Community Participation patient and public involvement Original Articles Public relations Feeling General partnership cancer research Original Article Health Services Research Thematic analysis Public aspects of medicine RA1-1270 0305 other medical science business Psychology
Zdroj:	Health Expectations : An International Journal of Public Participation in Health Care and Health Policy Health Expectations, Vol 24, Iss 4, Pp 1263-1269 (2021)
ISSN:	1369-7625 1369-6513
Popis:	Background Meaningful consumer involvement in health research is important. There are limited data on how to maintain long-term consumer involvement. Objective To identify barriers and facilitators to meaningful long-term consumer involvement in research. Design Six semi-structured interviews were conducted with members of the Primary Care Collaborative Cancer Clinical Trials Group (PC4) Community Advisory Group (CAG) and included the review of 40 supporting documents. Interviews and documents were analysed using inductive thematic analysis; the themes were mapped onto the domains of Cancer Australia's National Framework for Consumer Involvement in Cancer Control. Results Equality, respect and feeling valued were facilitators to long-term involvement. These elements were part of an overarching theme of organizational commitment. Creating balance, managing competing deadlines and integrating a consumer role with a personal life were key barriers to involvement. These themes mapped strongly to the National Framework for Consumer Involvement in Cancer Control domains of committed organizations, capable consumers, inclusive groups and shared focus. Conclusion Research networks should reflect on several factors to maintain long-term consumer involvement. Networks should aim to build a meaningful relationship, using clear communication and education, that reinforces the value and scope of a consumers contributions. We found that consumer education needs do not diminish over time and adequate skill development, support and feedback need to be on-going. Creating regular opportunities for feedback and reflection are important to continue to meet best practice guidelines.
Databáze:	OpenAIRE
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