ArticleTrials2012
Involvement of consumers in studies run by the Medical Research Council Clinical Trials Unit: results of a survey.
Article in Trials, 2012. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 33 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
33 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Public involvement in Australian clinical trials: A systematic review.Clinical trials (London, England) · 2024Pooled it
- Methods for delivering the UK's multi-centre prison-based naloxone-on-release pilot randomised trial (N-ALIVE): Europe's largest prison-based randomised controlled trial.Drug and alcohol review · 2018Trial
- Exploring the "how" in research partnerships with young partners by experience: lessons learned in six projects from Canada, the Netherlands, and the United Kingdom.Research involvement and engagement · 2022Article
- User involvement in ageing and health research: a survey of researchers' and older adults' perspectives.Health research policy and systems · 2022Article
- What Matters to Whom: Patient and Public Involvement in Research.Clinical obstetrics and gynecology · 2022Article
- Patient involvement in rare diseases research: a scoping review of the literature and mixed method evaluation of Norwegian researchers' experiences and perceptions.Orphanet journal of rare diseases · 2022Article
- A snapshot of consumer engagement in clinical trials in Australia: results of a national survey of clinical trial networks and research organisations.Research involvement and engagement · 2022Article
- Selection of endpoints in breast cancer clinical trials: a qualitative study of key trial stakeholders.American journal of cancer research · 2022Article
- Reporting of patient and public involvement and engagement (PPIE) in clinical trials published in nursing science journals: a descriptive study.Research involvement and engagement · 2021Article
- Conducting public involvement in dementia research: The contribution of the European Working Group of People with Dementia to the ROADMAP project.Health expectations : an international journal of public participation in health care and health policy · 2021Review
- Enabling Transdisciplinary Collaboration: Stakeholder Views on Working With "Children With Mentally Ill Parents" Research Groups.Frontiers in psychiatry · 2021Article
- Patient and Public Involvement in Sexual and Reproductive Health: Time to Properly Integrate Citizen's Input into Science.International journal of environmental research and public health · 2020Article
- Awareness of and Attitudes Toward User Involvement in Research on Aging and Health: Protocol for a Quantitative Large-Scale Panel Study.JMIR research protocols · 2020Article
- Evaluating the "return on patient engagement initiatives" in medicines research and development: A literature review.Health expectations : an international journal of public participation in health care and health policy · 2020Review
- A Framework to Ensure Patient Partners Have Equal and Contributing Voices Throughout the Research Program Evaluation Process.Canadian journal of kidney health and disease · 2020Article
- The Therapist-assisted Online Parenting Strategies (TOPS) program for parents of adolescents with clinical anxiety or depression: Development and feasibility pilot.Internet interventions · 2019Article
- Public involvement in health outcomes research: lessons learnt from the development of the recovering quality of life (ReQoL) measures.Health and quality of life outcomes · 2019Article
- Article
- User involvement in digital health: Working together to design smart home health technology.Health expectations : an international journal of public participation in health care and health policy · 2019Article
- Article
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
backgroundWe aimed to establish levels of consumer involvement in randomised controlled trials (RCTs), meta-analyses and other studies carried out by the UK Medical Research Council (MRC) Clinical Trials Unit across the range of research programs, predominantly in cancer and HIV.
methodsStaff responsible for studies that were included in a Unit Progress Report (MRC CTU, April 2009) were asked to complete a semi-structured questionnaire survey regarding consumer involvement. This was defined as active involvement of consumers as partners in the research process and not as subjects of that research. The electronic questionnaires combined open and closed questions, intended to capture quantitative and qualitative information on whether studies had involved consumers; types of activities undertaken; recruitment and support; advantages and disadvantages of involvement and its perceived impact on aspects of the research.
resultsBetween October 2009 and April 2010, 138 completed questionnaires (86%) were returned. Studies had been conducted over a 20 year period from 1989, and around half were in cancer; 30% in HIV and 20% were in other disease areas including arthritis, tuberculosis and blood transfusion medicine. Forty-three studies (31%) had some consumer involvement, most commonly as members of trial management groups (TMG) [88%]. A number of positive impacts on both the research and the researcher were identified. Researchers generally felt involvement was worthwhile and some felt that consumer involvement had improved the credibility of the research. Benefits in design and quality, trial recruitment, dissemination and decision making were also perceived. Researchers felt they learned from consumer involvement, albeit that there were some barriers.
conclusionsWhilst most researchers identified benefits of involving consumers, most of studies included in the survey had no involvement. Information from this survey will inform the development of a unit policy on consumer involvement, to guide future research conducted within the MRC Clinical Trials Unit and beyond.
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What OpenQuestion holds
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.