ArticleHealth expectations : an international journal of public participation in health care and health policy2018
Selective patient and public involvement: The promise and perils of pharmaceutical intervention for autism.
Article in Health expectations : an international journal of public participation in health care and health policy, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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
10 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Selection bias on intellectual ability in autism research: a cross-sectional review and meta-analysis.Molecular autism · 2019Pooled it
- The Development of Principles for Patient and Public Involvement (PPI) in Preclinical Spinal Cord Research: A Modified Delphi Study.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- The role of Patient and public involvement (PPI) in pre-clinical spinal cord research: An interview study.PloS one · 2024Article
- Applying Patient and Public Involvement in preclinical research: A co-created scoping review.Health expectations : an international journal of public participation in health care and health policy · 2022Article
- Methods to Generate Innovative Research Ideas and Improve Patient and Public Involvement in Modern Epidemiological Research: Review, Patient Viewpoint, and Guidelines for Implementation of a Digital Cohort Study.Journal of medical Internet research · 2021Review
- Measuring the impact of participatory research in psychiatry: How the search for epistemic justifications obscures ethical considerations.Health expectations : an international journal of public participation in health care and health policy · 2021Article
- Co-producing research with youth: The NeurOx young people's advisory group model.Health expectations : an international journal of public participation in health care and health policy · 2019Article
- Mapping the Autistic Advantage from the Accounts of Adults Diagnosed with Autism: A Qualitative Study.Autism in adulthood · 2019Article
- Autism Scientists' Reflections on the Opportunities and Challenges of Public Engagement: A Qualitative Analysis.Journal of autism and developmental disorders · 2019Article
- Selective patient and public involvement: The promise and perils of pharmaceutical intervention for autism.Health expectations : an international journal of public participation in health care and health policy · 2018Article
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
Abstract
backgroundGuidelines suggest the patient community should be consulted from the outset when designing and implementing basic biomedical research, but such patient communities may include conflicting views. We examined how engagement occurred in one such instance.
objectiveOur objective was to scrutinize patient and public involvement (PPI) by a pan-European biomedical consortium working to develop drugs to treat autism. We aimed to use this as an example to illustrate how PPI has been utilized in biomedical research. SETTING, PARTICIPANTS AND ANALYSIS: Two public events, one in the UK and one in Denmark were conducted as part of the consortium's on-going PPI activities in 2014 and 2015. Sixty-six individuals submitted written comments on the consortium's research after these events. The textual data produced were analysed using a thematic approach. Approximately 71% of respondents reported themselves to be adults on the autism spectrum or parents of children with autism.
resultsThe themes identified illustrated major differences between some community concerns and the biomedical research agenda. While treating autism per se. was seen as problematic by some, treating specific co-occurring problems was seen as helpful in some circumstances. The biomedical consortium selected PPI with a limited user viewpoint at its outset and more widely once basic research was on-going. DISCUSSION: This case illustrates what we term "selective PPI" where only a sympathetic and/or limited patient viewpoint is included. Findings highlight the perils of using selective PPI to legitimise scientific endeavours, and the possibilities for constructive dialogue.
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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.