ArticleHealth expectations : an international journal of public participation in health care and health policy2026
Co-Design of a New Integrated Care Model With People Affected by Huntington's Disease: A Mixed Methods Study.
Article in Health expectations : an international journal of public participation in health care and health policy, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.
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
1 citing paper in PubMed.
- Co-Design of a New Integrated Care Model With People Affected by Huntington's Disease: A Mixed Methods Study.Health expectations : an international journal of public participation in health care and health policy · 2026Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors.
Funding
Abstract
backgroundPeople living with neurological conditions have needs that require an integrated care approach. Existing models of integrated care have often emphasized system structures but neglected the micro-level interactions that matter most to people.
objectivesTo develop a micro-level model for integrated care that represents the care components most valued by people affected by Huntington's disease (HD).
methodsA mixed methods study with a co-designed approach was delivered through three phases. This paper reports on the latest two, where interviews and workshops were conducted with people with lived experience of HD and professionals, from January to October 2024. Patient and public contributors were involved from project design to data interpretation.
resultsThree themes were identified that position integrated care from the perspective of those affected by HD, representing these as the EC4Neuro model. Theme 1 identified the core components of micro-level integrated care: expert knowledge, person- and family-centred care, care coordination and continuity of care. Theme 2 underlined access inequities. Theme 3 highlighted people's responsibility to manage care without true agency to do so. The workshops prioritized strategies that enhance relational continuity between service users and providers. A tiered strategy was undertaken to support decision-making towards improving person-centred outcomes.
conclusionsEC4Neuro is the first integrated care model developed in HD. Its co-designed approach with end users successfully embedded people's perspective to guide what needs to be achieved at the micro-level. The EC4Neuro model offers prospective replication opportunities, particularly for stakeholders concerned with reducing access inequities and supporting relational continuity. PATIENT OR PUBLIC CONTRIBUTION: A group of 25 experts by lived experience of HD and other neurological disorders, co-designed this research project, working with the researchers from conception of the studies to analysis and interpretation of the data.
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.