ArticleHealth expectations : an international journal of public participation in health care and health policy2011
Patient-expert partnerships in research: how to stimulate inclusion of patient perspectives.
Article in Health expectations : an international journal of public participation in health care and health policy, 2011. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 49 papers, 3 of them syntheses that pooled it.
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Who cites it
49 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- An international Delphi survey and consensus meeting to define the core outcome set for trigeminal neuralgia clinical trials.European journal of pain (London, England) · 2023Pooled it
- Patient and public engagement in priority setting: A systematic rapid review of the literature.PloS one · 2018Pooled it
- Strategies for disseminating recommendations or guidelines to patients: a systematic review.Implementation science : IS · 2016Pooled it
- A systemic, multistakeholder participatory approach to research, innovation and action agenda setting for more integrated and effective prevention of HIV and other STIs: the case of Catalonia, Spain.Frontiers in public health · 2026Article
- European research Priorities for Osteopathic Care (PROCare): a sequential exploratory investigation and survey.BMJ open · 2025Article
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- The most important problems and needs of rasopathy patients with a noonan syndrome spectrum disorder.Orphanet journal of rare diseases · 2023Article
- Building Research Initiatives by Developing Group Effort (BRIDGE): Patient-Partners in Aphasia Research.Seminars in speech and language · 2022Article
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- Establishing the research agenda for oral healthcare using the Dialogue Model-patient involvement in a joint research agenda with practitioners.European journal of oral sciences · 2022Article
- Inclusion strategies in multi-stakeholder dialogues: The case of a community-based participatory research on immunization in Nigeria.PloS one · 2022Article
- Stroke survivors' experiences with rebuilding life in the community and exercising at home: A qualitative study.Nursing open · 2021Article
- Patient oriented research in mental health: matching laboratory to life and beyond in Canada.Research involvement and engagement · 2021Article
- Attitudes of Dilated Cardiomyopathy Patients and Investigators Toward Genomic Study Enrollment, Consent Process, and Return of Genetic Results.Clinical and translational science · 2021Observational
- A specific method for qualitative medical research: the IPSE (Inductive Process to analyze the Structure of lived Experience) approach.BMC medical research methodology · 2020Article
- Patient involvement in healthcare workers' practices: how does it operate? A mixed-methods study in a French university hospital.BMC health services research · 2020Review
- Making consultation meaningful: Insights from a case study of the South African mental health policy consultation process.PloS one · 2020Article
- "Be an ambassador for change that you would like to see": a call to action to all stakeholders for co-creation in healthcare and medical research to improve quality of life of people with a neuromuscular disease.Orphanet journal of rare diseases · 2019Article
- Coming from two different worlds-A qualitative, exploratory study of the collaboration between patient representatives and researchers.Health expectations : an international journal of public participation in health care and health policy · 2019Article
- Research in haematological cancers: What do patients in the Netherlands prioritise?European journal of cancer care · 2019Article
Corrections and comments
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Authors and funding
3 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
OBJECTIVE To gain more insight into exclusion mechanisms and inclusion strategies in patient-expert partnerships. BACKGROUND Patient participation in health research, on the level of 'partnerships with experts' is a growing phenomenon. However, little research is conducted whether exclusion mechanisms take place and to what extent patients' perspectives are included in the final outcomes of these partnerships. Case study A dialogue meeting attended by experts, patients and patient representatives to develop a joint research agenda. Different inclusion strategies were applied during the dialogue meeting to avoid possible exclusion. METHOD Data were collected by the means of audio and video recordings, observations, document analysis and evaluative interviews. The data are clustered using a framework that divides exclusion mechanisms in three categories: circumstances, behaviour and verbal communication. The data are analysed focusing on the experiences of participants, observation of occurrence of exclusion and difference between input and outcome of the dialogue meeting. RESULTS The circumstances of the dialogue and the behaviour of the participants were experienced as mainly inclusive. Some exclusion was observed particularly with respect to verbal communication. The input of the patients was less visible in the outcome of the dialogue meeting compared to the input of the experts. CONCLUSION This case study reveals that exclusion of patients' perspective occurred during a dialogue meeting with experts, despite the fact that inclusion strategies were used and patients experienced the dialogue meeting as inclusive. To realize a more effective patient-expert partnership, more attention should be paid to the application of some additional inclusion strategies.
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