READ ME File For 'Dataset title' Dataset DOI: 10.5258/SOTON/D3653 Date that the file was created: September, 2025 ------------------- GENERAL INFORMATION ------------------- ReadMe Author: SANDRA BARTOLOMEU PIRES, University of Southampton ORCID ID https://orcid.org/0000-0003-3711-9040 Date of data collection: Between January and June 2024 Information about geographic location of data collection: Participants living or working in England in pre-identified counties of interest. Related projects: Integrate-survey, published here: Bartolomeu Pires, S., Kunkel, D., Goodwin, N., Dace, S., Culliford, D., Kipps, C., & Portillo, M. C. (2024). Are people living with Huntington’s disease experiencing person-centered integrated care? Journal of Huntington’s Disease, 13(4), 535–546. https://doi.org/10.1177/18796397241288449 Interview data analysis, published here: Bartolomeu Pires, S., Kunkel, D., Karine, M., Goodwin, N., Kipps, C., & Portillo, M. C. (2026). Co-design of a new integrated care model with people affected by Huntington’s Disease: a mixed methods study Health Expectations -------------------------- SHARING/ACCESS INFORMATION -------------------------- Licenses/restrictions placed on the data, or limitations of reuse:  CC-BY license. Data is openly available and accessible for a minimum of 10 years from publication date. Recommended citation for the data: Bartolomeu Pires, S; Kunkel, D; Manera, K; Goodwin, N; Kipps, C; Portillo, MC (2025) Data in support of the paper "EC4Neuro: a user-led micro-level Huntington’s Disease model for neurological integrated care". University of Southampton PURE Dataset. https://doi.org/10.5258/SOTON/D3653 This dataset supports the publication: AUTHORS :Bartolomeu Pires, S; Kunkel, D; Manera, K; Goodwin, N; Kipps, C; Portillo, MC TITLE: Co-design of a new integrated care model with people affected by Huntington’s Disease: a mixed methods study JOURNAL: Health Expectations Date: 2026 Links/relationships to ancillary or related data sets: data from national survey Integrate-HD available in PURE at https://doi.org/10.5258/SOTON/D3114 -------------------- DATA & FILE OVERVIEW -------------------- This dataset contains: Interview Microsoft word documents anonymised and transcribed, collected through the Integrate-HD II project. Direct and indirect identifiers removed. The interviews are semi-structured and individual, taken with service users (SUs) and service providers (SPs) living with Huntington's Disease or supporting people with Huntington's Disease care, living in England. A total of 24 participants were consented and interviewed between January and June 2024, 15 SUs and 9 SPs, by the same researcher (Sandra Bartolomeu Pires). 24 Microsoft Word documents are individually uploaded into a zip folder. A Microsoft Excel document contains some participant data, such as the person gender, level of qualification, and other characteristics. Relationship between files, if important for context: We advise to read the original paper, then the Microsoft excel document, then the interview files. For additional information please contact Sandra Bartolomeu Pires. Additional related data collected that was not included in the current data package: Geographical location was collected but removed to keep the data anonymised. If data was derived from another source, list source: NA If there are there multiple versions of the dataset, list the file updated, when and why update was made: NA -------------------------- METHODOLOGICAL INFORMATION -------------------------- A mixed methods project with a co-designed approach was delivered through three phases. This dataset reports on phase 2, interviews conducted with people with lived experience of Huntington's Disease (HD) and professionals caring for people with Huntington's Disease. Patient and public contributors were involved from study design to data interpretation. The Integrate-HD project aimed to design a user-led micro-level integrated care model that identified the aspects of care most valued by people living with HD. The project objectives were to: 1. Develop an integrated care model based on the perspective of people living with HD; and 2. Incorporate person-centered outcomes into its design. The interviews explored people’s experiences with health and care services, interventions to promote integration and priorities for individuals. Four researchers trained in qualitative methodology (SBP, DK, KM, MCP) conducted the analysis. Interviews were transcribed and analyzed using the Framework Method, in NVivo (version 15), following the seven stages described by Gale and colleagues. The four researchers and four PPIE contributors independently coded three transcripts, reviewed against the study’s theoretical framework. Using this inductive-deductive approach, researchers refined an analytical framework, after which one researcher (SBP) coded the full dataset and charted results into matrices in Microsoft Excel. The team (SBP, DK, MCP) identified patterns, similarities and differences, to generate themes aligned with the study objectives. To enhance trustworthiness, preliminary findings were discussed at a PPIE workshop in March 2025. Methodological sources for analysis and rigour can be found in the original article featuring the interview results. -------------------------- DATA-SPECIFIC INFORMATION -------------------------- Number of cases/rows: 24 Microsoft word documents anonymised. 1 Excel document, rows 1 to 26, columns A-M Variable list, defining any abbreviations, units of measure, codes or symbols used: SU service user SP service provider Specialized formats or other abbreviations used: Huntington's Disease is rare. To protect people's identities direct and indirect identifiers were removed or edited. Some examples below: Comorbidities mentioned, for example "Gout" changed in the file to “type of arthritis” Professional roles adapted to generic terms, for example [construction work] People's ages or dates changed to intervals, for example age [20-30] Questions related to gender, housing, education etc were redacted for anonymisation. Where the text was modified from the original transcript, the parenthesis [ ] were used.