Piloting a minimum data set for older people living in care homes in England: a developmental study

doi:10.1093/ageing/afaf001

. 2025 Jan 6;54(1):afaf001.

doi: 10.1093/ageing/afaf001.

Piloting a minimum data set for older people living in care homes in England: a developmental study

Adam L Gordon^{1

2}, Stacey Rand³, Elizabeth Crellin⁴, Stephen Allan³, Freya Tracey⁴, Kaat De Corte⁴, Therese Lloyd⁴, Richard Brine⁵, Rachael E Carroll^{6

7}, Ann-Marie Towers⁸, Jennifer Kirsty Burton⁹, Gizdem Akdur¹⁰, Barbara Hanratty¹¹, Lucy Webster⁶, Sinead Palmer³, Liz Jones¹², Julienne Meyer¹³, Karen Spilsbury^{14

15}, Anne Killett¹⁶, Arne T Wolters¹⁷, Guy Peryer¹⁶, Claire Goodman^{10

18}

Affiliations

¹ Wolfson Institute of Population Health, Queen Mary University of London, London, UK.
² Academic Centre for Healthy Ageing, Barts Health NHS Trust, London, UK.
³ Personal Social Services Research Unit (PSSRU), University of Kent, Canterbury, Kent, UK.
⁴ Improvement Analytics Unit, the Health Foundation, London, UK.
⁵ Our Future Health, London, UK.
⁶ Academic Unit of Injury, Recovery and Inflammation Sciences, School of Medicine, University of Nottingham, Nottingham NG7 2UH, UK.
⁷ NIHR Applied Research Collaboration-East Midlands (ARC-EM), Nottingham, UK.
⁸ Health and Social Care Workforce Research Unit, Kings College London, London, UK.
⁹ School of Cardiovascular and Metabolic Health, College of Medical, Veterinary and Life Sciences, University of Glasgow, Glasgow, UK.
¹⁰ Centre for Research in Public Health and Community Care (CRIPACC), University of Hertfordshire, College Lane, Hatfield, UK.
¹¹ Population Health Sciences Institute, Newcastle University, Newcastle upon Tyne, UK.
¹² National Care Forum, London, UK.
¹³ School of Health and Psychological Sciences, City University of London, London, UK.
¹⁴ School of Healthcare, Faculty of Medicine and Health, University of Leeds, Leeds, UK.
¹⁵ NIHR Applied Research Collaboration Yorkshire and Humber (YHARC), Bradford, UK.
¹⁶ School of Health Sciences, University of East Anglia, Norwich, Norfolk,UK.
¹⁷ Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust, Newcastle upon Tyne, UK.
¹⁸ NIHR Applied Research Collaboration-East of England (ARC-EoE), Cambridge, UK.

PMID: 39812411
PMCID: PMC11733825
DOI: 10.1093/ageing/afaf001

Piloting a minimum data set for older people living in care homes in England: a developmental study

Adam L Gordon et al. Age Ageing. 2025.

. 2025 Jan 6;54(1):afaf001.

doi: 10.1093/ageing/afaf001.

Authors

Affiliations

¹ Wolfson Institute of Population Health, Queen Mary University of London, London, UK.
² Academic Centre for Healthy Ageing, Barts Health NHS Trust, London, UK.
³ Personal Social Services Research Unit (PSSRU), University of Kent, Canterbury, Kent, UK.
⁴ Improvement Analytics Unit, the Health Foundation, London, UK.
⁵ Our Future Health, London, UK.
⁶ Academic Unit of Injury, Recovery and Inflammation Sciences, School of Medicine, University of Nottingham, Nottingham NG7 2UH, UK.
⁷ NIHR Applied Research Collaboration-East Midlands (ARC-EM), Nottingham, UK.
⁸ Health and Social Care Workforce Research Unit, Kings College London, London, UK.
⁹ School of Cardiovascular and Metabolic Health, College of Medical, Veterinary and Life Sciences, University of Glasgow, Glasgow, UK.
¹⁰ Centre for Research in Public Health and Community Care (CRIPACC), University of Hertfordshire, College Lane, Hatfield, UK.
¹¹ Population Health Sciences Institute, Newcastle University, Newcastle upon Tyne, UK.
¹² National Care Forum, London, UK.
¹³ School of Health and Psychological Sciences, City University of London, London, UK.
¹⁴ School of Healthcare, Faculty of Medicine and Health, University of Leeds, Leeds, UK.
¹⁵ NIHR Applied Research Collaboration Yorkshire and Humber (YHARC), Bradford, UK.
¹⁶ School of Health Sciences, University of East Anglia, Norwich, Norfolk,UK.
¹⁷ Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust, Newcastle upon Tyne, UK.
¹⁸ NIHR Applied Research Collaboration-East of England (ARC-EoE), Cambridge, UK.

PMID: 39812411
PMCID: PMC11733825
DOI: 10.1093/ageing/afaf001

Abstract

Background: We developed a prototype minimum data set (MDS) for English care homes, assessing feasibility of extracting data directly from digital care records (DCRs) with linkage to health and social care data.

Methods: Through stakeholder development workshops, literature reviews, surveys and public consultation, we developed an aspirational MDS. We identified ways to extract this from existing sources, including DCRs and routine health and social care datasets. To address gaps, we added validated measures of delirium, cognitive impairment, functional independence and quality of life to DCR software. Following routine health and social care data linkage to DCRs, we compared variables recorded across multiple data sources, using a hierarchical approach to reduce missingness where appropriate. We reported proportions of missingness, mean and standard deviation (SD) or frequencies (%) for all variables.

Results: We recruited 996 residents from 45 care homes in three English Integrated Care Systems. 727 residents had data included in the MDS. Additional data were well completed (<35% missingness at wave 1). Competition for staff time, staff attrition and software-related implementation issues contributed to missing DCR data. Following data linkage and combining variables where appropriate, missingness was reduced (≤4% where applicable).

Discussion: Integration of health and social care is predicated on access to data and interoperability. Despite governance challenges we safely linked care home DCRs to statutory health and social care datasets to create a viable prototype MDS for English care homes. We identified issues around data quality, governance, data plurality and data completion essential to MDS implementation going forward.

Keywords: care homes; data linkage; digital care record; minimum dataset; older people; qualitative research; quality of life.

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Conflict of interest statement

None declared.

Figures

**Figure 1**
Flow diagram of residents from recruitment into final prototype MDS (Wave 1).

See this image and copyright information in PMC

Cited by

Assessing the feasibility of measuring residents' quality of life in English care homes and the construct validity and internal consistency of measures completed by staff proxy: a cross-sectional study.
Towers AM, Rand S, Allan S, Webster LA, Palmer S, Carroll R, Gordon AL, Akdur G, Smith N, Burton J, Killett A, Hanratty B, Meyer J, Spilsbury K, Goodman C. Towers AM, et al. BMJ Open. 2025 Jan 29;15(1):e090684. doi: 10.1136/bmjopen-2024-090684. BMJ Open. 2025. PMID: 39880439 Free PMC article.
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Allan S, Rand S, Towers AM, De Corte K, Tracey F, Crellin E, Lloyd T, Carroll RE, Palmer S, Webster L, Gordon A, Smith N, Akdur G, Killett A, Spilsbury K, Goodman C. Allan S, et al. Health Qual Life Outcomes. 2025 Apr 5;23(1):33. doi: 10.1186/s12955-025-02356-0. Health Qual Life Outcomes. 2025. PMID: 40188343 Free PMC article.
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Carroll RE, Smith N, Palmer SE, Burton JK, Gordon AL, Towers AM, Rand SE, Tracey F, Killett A, Webster L, Hanratty B, Spilsbury K, Akdur G, De Corte K, Meyer JE, Jones L, Goodman C. Carroll RE, et al. BMC Geriatr. 2025 Aug 8;25(1):604. doi: 10.1186/s12877-025-06260-6. BMC Geriatr. 2025. PMID: 40781594 Free PMC article.
New horizons in improving research capacity in English care homes for older adults.
Ruiz-Burga E, Flowers P, Fry Z, Slator M, Hague L, Green M, Gordon AL, Towers AM, Knapp M, Surr C, Shallcross L. Ruiz-Burga E, et al. Age Ageing. 2025 Aug 1;54(8):afaf211. doi: 10.1093/ageing/afaf211. Age Ageing. 2025. PMID: 40753533 Free PMC article.
Public Involvement to Enhance Care Home Research; Collaboration on a Minimum Data Set for Care Homes.
Killett A, Micklewright K, Carroll R, Akdur G, Allinson E, Crellin L, de Corte K, Fox M, Hanratty B, Irvine L, Jones L, Kelly M, Lloyd T, Meyer J, Spilsbury K, Towers AM, Tracey F, Willmott J, Goodman C. Killett A, et al. Health Expect. 2025 Feb;28(1):e70140. doi: 10.1111/hex.70140. Health Expect. 2025. PMID: 39806859 Free PMC article.

References

1. Gordon AL, Franklin M, Bradshaw Let al. . Health status of UK care home residents: a cohort study. Age Ageing. 2014;43:97–103. - PMC - PubMed
1. Berg V. Care home stats: number of settings, population & workforce, https://www.carehome.co.uk/advice/care-home-stats-number-of-settings-pop... (last accessed 28th Jan, 2024).
1. Hanratty B, Wolters AT, Towers A-Met al. . Data collection in care homes for older adults: a National Survey in England. J Long Term Care. 2023: 288–96.
1. Burton JK, Goodman C, Guthrie Bet al. . Closing the UK care home data gap – methodological challenges and solutions. Int J Popul Data Sci. 2020;5:1391. - PMC - PubMed
1. Aalto UL, Pitkälä KH, Andersen-Ranberg Ket al. . COVID-19 pandemic and mortality in nursing homes across USA and Europe up to October 2021. Eur Geriatr Med. 2022;1:1–5. - PMC - PubMed

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[1] Gordon AL, Franklin M, Bradshaw Let al. . Health status of UK care home residents: a cohort study. Age Ageing. 2014;43:97–103. - PMC - PubMed

[2] Gordon AL, Franklin M, Bradshaw Let al. . Health status of UK care home residents: a cohort study. Age Ageing. 2014;43:97–103. - PMC - PubMed

[3] Berg V. Care home stats: number of settings, population & workforce, https://www.carehome.co.uk/advice/care-home-stats-number-of-settings-pop... (last accessed 28th Jan, 2024).

[4] Berg V. Care home stats: number of settings, population & workforce, https://www.carehome.co.uk/advice/care-home-stats-number-of-settings-pop... (last accessed 28th Jan, 2024).

[5] Hanratty B, Wolters AT, Towers A-Met al. . Data collection in care homes for older adults: a National Survey in England. J Long Term Care. 2023: 288–96.

[6] Hanratty B, Wolters AT, Towers A-Met al. . Data collection in care homes for older adults: a National Survey in England. J Long Term Care. 2023: 288–96.

[7] Burton JK, Goodman C, Guthrie Bet al. . Closing the UK care home data gap – methodological challenges and solutions. Int J Popul Data Sci. 2020;5:1391. - PMC - PubMed

[8] Burton JK, Goodman C, Guthrie Bet al. . Closing the UK care home data gap – methodological challenges and solutions. Int J Popul Data Sci. 2020;5:1391. - PMC - PubMed

[9] Aalto UL, Pitkälä KH, Andersen-Ranberg Ket al. . COVID-19 pandemic and mortality in nursing homes across USA and Europe up to October 2021. Eur Geriatr Med. 2022;1:1–5. - PMC - PubMed

[10] Aalto UL, Pitkälä KH, Andersen-Ranberg Ket al. . COVID-19 pandemic and mortality in nursing homes across USA and Europe up to October 2021. Eur Geriatr Med. 2022;1:1–5. - PMC - PubMed

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Piloting a minimum data set for older people living in care homes in England: a developmental study

Affiliations

Piloting a minimum data set for older people living in care homes in England: a developmental study

Authors

Affiliations

Abstract

Conflict of interest statement

Figures

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References

MeSH terms

Grants and funding

LinkOut - more resources

Full Text Sources

Medical

Research Materials

Miscellaneous

Abstract

Conflict of interest statement

Figures

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References

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Related information

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Medical

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