Health expectations : an international journal of public participation in health care and health policy · 2026
Co-Design of a New Integrated Care Model With People Affected by Huntington's Disease: A Mixed Methods Study.
СтатьяПоддержка исследования: вне правительства СШАНазвание и аннотация: Перевод в очереди
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Pires Sandra Bartolomeu, Kunkel Dorit, Manera Karine, Goodwin Nicholas, Kipps Christopher, Portillo Mari Carmen
Аннотация
BACKGROUND: People 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.
OBJECTIVES: To develop a micro-level model for integrated care that represents the care components most valued by people affected by Huntington's disease (HD).
METHODS: A 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.
RESULTS: Three 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.
CONCLUSIONS: EC4Neuro 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.
OBJECTIVES: To develop a micro-level model for integrated care that represents the care components most valued by people affected by Huntington's disease (HD).
METHODS: A 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.
RESULTS: Three 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.
CONCLUSIONS: EC4Neuro 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.