ArticleHealth expectations : an international journal of public participation in health care and health policy2005
Patients' priorities concerning health research: the case of asthma and COPD research in the Netherlands.
Article in Health expectations : an international journal of public participation in health care and health policy, 2005. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT03432143 (Community Members as Reviewers of Medical Journal Manuscripts), which is not on this map. Cited by 54 papers, 3 of them syntheses 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.
Community Members as Reviewers of Medical Journal Manuscripts
Who cites it
54 citing papers in PubMed, 3 syntheses or guidelines pooled it, 107 citations in OpenAlex.
- Priorities of patients, caregivers and health-care professionals for health research - A systematic review.Health expectations : an international journal of public participation in health care and health policy · 2020Pooled it
- Mapping the impact of patient and public involvement on health and social care research: a systematic review.Health expectations : an international journal of public participation in health care and health policy · 2014Pooled it
- Patient engagement in research: a systematic review.BMC health services research · 2014Pooled it
- Patient and Family Input to Determine Experiences and Research Interests in Pediatric Pancreatitis: An INSPPIRE-2 Study.Pancreas · 2025Article
- "A good day is just being able to breathe": Aligning COPD research with patient needs, a qualitative study.PloS one · 2025Article
- The Personalized Priority and Progress Questionnaire (PPPQ): A personalized instrument for quality of life and self-management for use in clinical trials and practice.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2023Article
- Community Members as Reviewers of Medical Journal Manuscripts: a Randomized Controlled Trial.Journal of general internal medicine · 2023Article
- Including Patient Voices in Continuing Medical Education: One Provider's Experience.Journal of CME · 2023Article
- Priorities in Pulmonary Rehabilitation Research: The Patient Perspective.Physiotherapy Canada. Physiotherapie Canada · 2022Article
- What are the respiratory health research priorities in Alberta, Canada? A stakeholder consultation.BMJ open · 2022Article
- Monitoring and Evaluation of Patient Engagement in Health Product Research and Development: Co-Creating a Framework for Community Advisory Boards.Journal of patient-centered research and reviews · 2022Article
- Developing a patient-driven chronic obstructive pulmonary disease (COPD) research agenda in the U.S.Journal of patient-reported outcomes · 2021Article
- Optimising Multi-stakeholder Practices in Patient Engagement: A Gap Analysis to Enable Focused Evolution of Patient Engagement in the Development and Lifecycle Management of Medicines.Therapeutic innovation & regulatory science · 2021Article
- What do end-users want to know about managing the performance of healthcare delivery systems? Co-designing a context-specific and practice-relevant research agenda.Health research policy and systems · 2021Review
- Evaluation of patient engagement in medicine development: A multi-stakeholder framework with metrics.Health expectations : an international journal of public participation in health care and health policy · 2021Article
- Research priorities to address the global burden of chronic obstructive pulmonary disease (COPD) in the next decade.Journal of global health · 2021Article
- Adolescents' experiences with patient engagement in respiratory medicine.Pediatric pulmonology · 2021Article
- Public priorities for osteoporosis and fracture research: results from a focus group study.Archives of osteoporosis · 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
- EANM commitment towards involvement and engagement of patients and the public: learning from the UK experience.European journal of nuclear medicine and molecular imaging · 2019Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors at 3 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundAlthough patients are increasingly involved in agenda setting within specific fields of health research, they rarely participate in decision-making on the entire breadth of health research, including biomedical research. This might be attributable to a widely held view that patients are incapable of adequate research prioritization due to a lack of relevant knowledge, a failure to look beyond their own individual problems or an inability to objectively consider long-term targets.
aimsBy conducting transparent and structured consultations with asthma and chronic obstructive pulmonary disease (COPD) patients regarding their health research priorities, we aim to assess the ability of patients to prioritize research in a well-argued way.
methodsPatients were consulted through seven focus groups, a feedback meeting, and a questionnaire. The focus groups and the feedback meeting aimed to explore the entire breadth of patients' problems experienced in relation to their diseases, while the questionnaire aimed to investigate patients' prioritization of possible research targets focused on solving these problems.
resultsThe focus groups produced a wide range of problems, including those related to health-care organization, social environment, therapy and costs. In terms of research prioritization, patients focused primarily on biomedical issues, particularly aetiology, co-morbidity and effective medication.
conclusionsThe consultation procedure successfully elicited patients' research priorities including the underlying arguments. Our results indicate that asthma and COPD patients are capable of research prioritization in a well-argued way and that they highly value biomedical research. Furthermore, as they prioritized some research topics that are not covered by current Dutch research programmes, we argue that patient participation can broaden research agenda setting.
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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.