ArticleHealth expectations : an international journal of public participation in health care and health policy2000
The use of patients' stories by self-help groups: a survey of voluntary organizations in the UK on the register of the College of Health.
Article in Health expectations : an international journal of public participation in health care and health policy, 2000. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers, 2 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.
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Who cites it
3 citing papers in PubMed, 2 syntheses or guidelines pooled it, 15 citations in OpenAlex.
- Risks and Benefits of Web-Based Patient Narratives: Systematic Review.Journal of medical Internet research · 2020Pooled it
- A systematic review of information in decision aids.Health expectations : an international journal of public participation in health care and health policy · 2007Pooled it
- Understanding patient experiences: The powerful source of written patient stories.Health expectations : an international journal of public participation in health care and health policy · 2020Article
Corrections and comments
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Authors and funding
7 authors at 3 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveFirst-hand accounts of illness experience are believed to provide important insights for other patients and their carers. We report the results of a survey that explored how patients' stories are being collected and used by self-help and voluntary groups.
methodsThe annual College of Health survey contacts 2 458 addresses, which includes many self-help groups and voluntary associations. A brief questionnaire for the self-help groups on the register was attached to the summer 1999 survey on behalf of the DIPEx (database of individual patient experience) project.
resultsDIPEx received replies from 309 organizations representing a wide range of interests and conditions. These indicated that 202 (65%) of the groups currently use patients' stories in various ways. A further 59 (19%) of the groups reported that although they are not currently using them, they would like to in the future. Organizations that use patients' stories were invited to describe how they use them and provide examples, if applicable. Content analysis of the free text descriptions revealed 22 distinct uses among the 202 organizations using patient stories. The most frequent uses are the inclusion of patient stories in interviews or articles for the group newsletter (74 or 37%) and the use of stories for inclusion in newspaper articles or media broadcasts (31 or 15%). Some form of database of patients' stories was maintained by 23 groups (12%).
conclusionsThese findings suggest that patients' stories are widely collected and used to support a wide range of the recognized functions of self-help and voluntary groups. This is encouraging to the DIPEx project's efforts to collect and analyse accounts of illness experience, which will be presented with evidence-based information about the effects of treatments.
Identifiers
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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.