ArticleHealth expectations : an international journal of public participation in health care and health policy2021
Long-term consumer involvement in cancer research: Working towards partnership.
Article in Health expectations : an international journal of public participation in health care and health policy, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers, 1 of them a synthesis that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
13 citing papers in PubMed, 1 synthesis or guideline pooled it.
- REPRESENT recommendations: improving inclusion and trust in cancer early detection research.British journal of cancer · 2023Pooled it
- Questions for more insightful and useful analyses of barriers and facilitators to public involvement and engagement in health research: a critical narrative review.Research involvement and engagement · 2026Review
- Towards Meaningful Consumer and Community Involvement in Health Research: A Qualitative Study of Consumer and Researcher Experiences.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Strengthening health literacy research through consumer engagement: a qualitative analysis of building and maintaining partnership.Health promotion international · 2025Article
- Involving consumers in health research through the use of consumer panels: a scoping review.Research involvement and engagement · 2025Review
- The Importance of Lived Experience: A Scoping Review on the Value of Patient and Public Involvement in Health Research.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Perspectives of cancer consumer representatives on their involvement in healthcare service improvement: a qualitative study.BMC health services research · 2024Article
- Patient and public involvement in preclinical and medical research: Evaluation of an established programme in a Discovery-Based Medical Research Institute.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- An effective approach to tackling complex health policy challenges. Using a clinical microsystems approach and rethinking codesign.Frontiers in public health · 2024Article
- Defining research priorities and needs in cancer symptoms for adults diagnosed with cancer: an Australian/New Zealand modified Delphi study.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2023Article
- 'Share your views'-international consultation informs a patient engagement strategy for the Multinational Association of Supportive Care in Cancer.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2022Article
- Selection of endpoints in breast cancer clinical trials: a qualitative study of key trial stakeholders.American journal of cancer research · 2022Article
- Long-term consumer involvement in cancer research: Working towards partnership.Health expectations : an international journal of public participation in health care and health policy · 2021Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundMeaningful consumer involvement in health research is important. There are limited data on how to maintain long-term consumer involvement.
objectiveTo identify barriers and facilitators to meaningful long-term consumer involvement in research.
designSix 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.
resultsEquality, 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.
conclusionResearch 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.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.