ArticleThe patient2017
Moving from Patient Advocacy to Partnership: A Long and Bumpy Road.
Article in The patient, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 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
8 citing papers in PubMed.
- The 2025 WAO Guidelines for the classification, diagnosis, and treatment of hereditary angioedema, with consideration of worldwide disparities.The World Allergy Organization journal · 2026Article
- Supporting the continuous development and use of a patient partnership framework in European rare disease networks (ERNs): a scoping review of frameworks in the scientific literature.Journal of community genetics · 2025Review
- Embedding patient engagement in the R&D process of a life sciences company through co-creation with a patient expert R&D board: a case study.Research involvement and engagement · 2024Article
- The Ecology of Engagement: Fostering cooperative efforts in health with patients and communities.Health expectations : an international journal of public participation in health care and health policy · 2022Review
- Does Belonging to a Patient Association Is of Help for Patients with Axial Spondyloarthritis? Results from the Atlas Survey.Current rheumatology reports · 2020Review
- Practical Considerations in Using Online Modified-Delphi Approaches to Engage Patients and Other Stakeholders in Clinical Practice Guideline Development.The patient · 2020Article
- Building a Bridge Between Genetics and Outcomes Research: Application in Autism (The AutGO Study).The patient · 2018Article
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Authors and funding
1 author.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Real-life experiences of grassroots patient organizations across a variety of diseases, countries and contexts have been used to develop a four-mode framework of the transition from patient advocacy to partnership, defined by one axis as individual versus collective action and the other axis as activities 'outside' or 'inside' the system. The four quadrants are labeled as advocacy, activism, reform and broker, and engagement is further refined by whether the participation is 'pushed' by the group or 'pulled' by the system. There are many examples of patient advocacy groups transitioning through the four quadrants; however, depending on other factors of culture, opportunity and their own preferences, groups may work primarily through one or two quadrants.
Indexed as
Identifiers
28097637What 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.