ArticleJournal of bioethical inquiry2018
Representing Whom? U.K. Health Consumer and Patients' Organizations in the Policy Process.
Article in Journal of bioethical inquiry, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.
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
5 citing papers in PubMed, 9 citations in OpenAlex.
- Commercial influences on patient and public involvement: a renewed call for research and action.Health promotion international · 2024Article
- Integrated Payment, Fragmented Realities? A Discourse Analysis of Integrated Payment in the Netherlands.International journal of environmental research and public health · 2022Article
- Collective forward-looking responsibility of patient advocacy organizations: conceptual and ethical analysis.BMC medical ethics · 2021Article
- Citizens under the umbrella: citizenship projects and the development of genetic umbrella organizations in the USA and the UK.New genetics and society · 2020Article
- One For All, All For One? Collective Representation in Healthcare Policy.Journal of bioethical inquiry · 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
2 authors at 1 institution in 1 country.
Funding
Abstract
This paper draws on nearly two decades of research on health consumer and patients' organizations (HCPOs) in the United Kingdom. In particular, it addresses questions of representation and legitimacy in the health policy process. HCPOs claim to represent the collective interests of patients and others such as relatives and carers. At times they also make claims to represent the wider public interest. Employing Pitkin's classic typology of formalistic, descriptive, symbolic, and substantive representation, the paper explores how and in what sense HCPOs represent their constituencies. We found that policymakers themselves are less concerned with formal mechanisms adopted by groups and are more concerned with credibility, in particular whether HCPOs carry the confidence of their constituents. While some concerns about legitimacy remain, particularly in relation to funding from commercial interests, we argue that HCPOs bring a unique perspective to the policy process and to focus purely on formalistic representation provides only a partial understanding of their representative role and a constrained view of their collective moral claims.
Indexed as
Identifiers
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.