Piloting a minimum data set for older people living in care homes in England: a developmental study
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. Through stakeholder development workshops, literature reviews, surveys and public consultation, we d...
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| creator | Gordon, Adam L Rand, Stacey Crellin, Elizabeth Allan, Stephen Tracey, Freya De Corte, Kaat Lloyd, Therese Brine, Richard Carroll, Rachael E Towers, Ann-Marie Burton, Jennifer Kirsty Akdur, Gizdem Hanratty, Barbara Webster, Lucy Palmer, Sinead Jones, Liz Meyer, Julienne Spilsbury, Karen Killett, Anne Wolters, Arne T Peryer, Guy Goodman, Claire |
| description | 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.
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.
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 ( |
| doi_str_mv | 10.1093/ageing/afaf001 |
| format | Article |
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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.
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).
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.</description><identifier>ISSN: 0002-0729</identifier><identifier>ISSN: 1468-2834</identifier><identifier>EISSN: 1468-2834</identifier><identifier>DOI: 10.1093/ageing/afaf001</identifier><identifier>PMID: 39812411</identifier><language>eng</language><publisher>England: Oxford University Press</publisher><subject>Aged ; Aged, 80 and over ; Datasets as Topic ; Delirium - diagnosis ; Delirium - epidemiology ; England ; Feasibility Studies ; Female ; Geriatric Assessment - methods ; Homes for the Aged - statistics & numerical data ; Humans ; Male ; Nursing Homes ; Qualitative Paper ; Quality of Life</subject><ispartof>Age and ageing, 2025-01, Vol.54 (1)</ispartof><rights>The Author(s) 2025. Published by Oxford University Press on behalf of the British Geriatrics Society.</rights><rights>The Author(s) 2025. Published by Oxford University Press on behalf of the British Geriatrics Society. 2025</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><cites>FETCH-LOGICAL-c276t-dae8072f035b6aae45795c82299c4f7f59ab62bed17f060e6f88eabca568ff1e3</cites><orcidid>0000-0002-8938-4893 ; 0000-0003-3597-1061 ; 0000-0002-6908-0032 ; 0000-0001-7326-4750 ; 0000-0003-0425-6911</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><link.rule.ids>230,314,776,780,881,27901,27902</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/39812411$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Gordon, Adam L</creatorcontrib><creatorcontrib>Rand, Stacey</creatorcontrib><creatorcontrib>Crellin, Elizabeth</creatorcontrib><creatorcontrib>Allan, Stephen</creatorcontrib><creatorcontrib>Tracey, Freya</creatorcontrib><creatorcontrib>De Corte, Kaat</creatorcontrib><creatorcontrib>Lloyd, Therese</creatorcontrib><creatorcontrib>Brine, Richard</creatorcontrib><creatorcontrib>Carroll, Rachael E</creatorcontrib><creatorcontrib>Towers, Ann-Marie</creatorcontrib><creatorcontrib>Burton, Jennifer Kirsty</creatorcontrib><creatorcontrib>Akdur, Gizdem</creatorcontrib><creatorcontrib>Hanratty, Barbara</creatorcontrib><creatorcontrib>Webster, Lucy</creatorcontrib><creatorcontrib>Palmer, Sinead</creatorcontrib><creatorcontrib>Jones, Liz</creatorcontrib><creatorcontrib>Meyer, Julienne</creatorcontrib><creatorcontrib>Spilsbury, Karen</creatorcontrib><creatorcontrib>Killett, Anne</creatorcontrib><creatorcontrib>Wolters, Arne T</creatorcontrib><creatorcontrib>Peryer, Guy</creatorcontrib><creatorcontrib>Goodman, Claire</creatorcontrib><title>Piloting a minimum data set for older people living in care homes in England: a developmental study</title><title>Age and ageing</title><addtitle>Age Ageing</addtitle><description>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.
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.
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).
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.</description><subject>Aged</subject><subject>Aged, 80 and over</subject><subject>Datasets as Topic</subject><subject>Delirium - diagnosis</subject><subject>Delirium - epidemiology</subject><subject>England</subject><subject>Feasibility Studies</subject><subject>Female</subject><subject>Geriatric Assessment - methods</subject><subject>Homes for the Aged - statistics & numerical data</subject><subject>Humans</subject><subject>Male</subject><subject>Nursing Homes</subject><subject>Qualitative Paper</subject><subject>Quality of Life</subject><issn>0002-0729</issn><issn>1468-2834</issn><issn>1468-2834</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2025</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><recordid>eNpVkc1r3DAQxUVJabZprz0GHXNxog_LlnspYUk_INAe2rMYy6ONimw5kr2Q_z5adhvS0zDMm9-84RHyibNrzjp5Azv00-4GHDjG-Buy4XWjK6FlfUY2jDFRsVZ05-R9zn9LyxUX78i57DQXNecbYn_5EJeCoEBHP_lxHekAC9CMC3Ux0RgGTHTGOAekwe8PUj9RCwnpQxwxH7q7aRdgGj4XyIB7DHEecVog0Lysw9MH8tZByPjxVC_In693v7ffq_uf335sb-8rK9pmqQZAXcw6JlXfAGCt2k5ZLUTX2dq1TnXQN6LHgbeONQwbpzVCb0E12jmO8oJ8OXLntR9xsMVCgmDm5EdITyaCN_9PJv9gdnFvOG-l1EIVwtWJkOLjinkxo88WQ3kO45qN5Eq1gtdcFun1UWpTzDmhe7nDmTlEY47RmFM0ZeHytbsX-b8s5DN0ZY65</recordid><startdate>20250106</startdate><enddate>20250106</enddate><creator>Gordon, Adam L</creator><creator>Rand, Stacey</creator><creator>Crellin, Elizabeth</creator><creator>Allan, Stephen</creator><creator>Tracey, Freya</creator><creator>De Corte, Kaat</creator><creator>Lloyd, Therese</creator><creator>Brine, Richard</creator><creator>Carroll, Rachael E</creator><creator>Towers, Ann-Marie</creator><creator>Burton, Jennifer Kirsty</creator><creator>Akdur, Gizdem</creator><creator>Hanratty, Barbara</creator><creator>Webster, Lucy</creator><creator>Palmer, Sinead</creator><creator>Jones, Liz</creator><creator>Meyer, Julienne</creator><creator>Spilsbury, Karen</creator><creator>Killett, Anne</creator><creator>Wolters, Arne T</creator><creator>Peryer, Guy</creator><creator>Goodman, Claire</creator><general>Oxford University Press</general><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>7X8</scope><scope>5PM</scope><orcidid>https://orcid.org/0000-0002-8938-4893</orcidid><orcidid>https://orcid.org/0000-0003-3597-1061</orcidid><orcidid>https://orcid.org/0000-0002-6908-0032</orcidid><orcidid>https://orcid.org/0000-0001-7326-4750</orcidid><orcidid>https://orcid.org/0000-0003-0425-6911</orcidid></search><sort><creationdate>20250106</creationdate><title>Piloting a minimum data set for older people living in care homes in England: a developmental study</title><author>Gordon, Adam L ; Rand, Stacey ; Crellin, Elizabeth ; Allan, Stephen ; Tracey, Freya ; De Corte, Kaat ; Lloyd, Therese ; Brine, Richard ; Carroll, Rachael E ; Towers, Ann-Marie ; Burton, Jennifer Kirsty ; Akdur, Gizdem ; Hanratty, Barbara ; Webster, Lucy ; Palmer, Sinead ; Jones, Liz ; Meyer, Julienne ; Spilsbury, Karen ; Killett, Anne ; Wolters, Arne T ; Peryer, Guy ; Goodman, Claire</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c276t-dae8072f035b6aae45795c82299c4f7f59ab62bed17f060e6f88eabca568ff1e3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2025</creationdate><topic>Aged</topic><topic>Aged, 80 and over</topic><topic>Datasets as Topic</topic><topic>Delirium - diagnosis</topic><topic>Delirium - epidemiology</topic><topic>England</topic><topic>Feasibility Studies</topic><topic>Female</topic><topic>Geriatric Assessment - methods</topic><topic>Homes for the Aged - statistics & numerical data</topic><topic>Humans</topic><topic>Male</topic><topic>Nursing Homes</topic><topic>Qualitative Paper</topic><topic>Quality of Life</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Gordon, Adam L</creatorcontrib><creatorcontrib>Rand, Stacey</creatorcontrib><creatorcontrib>Crellin, Elizabeth</creatorcontrib><creatorcontrib>Allan, Stephen</creatorcontrib><creatorcontrib>Tracey, Freya</creatorcontrib><creatorcontrib>De Corte, Kaat</creatorcontrib><creatorcontrib>Lloyd, Therese</creatorcontrib><creatorcontrib>Brine, Richard</creatorcontrib><creatorcontrib>Carroll, Rachael E</creatorcontrib><creatorcontrib>Towers, Ann-Marie</creatorcontrib><creatorcontrib>Burton, Jennifer Kirsty</creatorcontrib><creatorcontrib>Akdur, Gizdem</creatorcontrib><creatorcontrib>Hanratty, Barbara</creatorcontrib><creatorcontrib>Webster, Lucy</creatorcontrib><creatorcontrib>Palmer, Sinead</creatorcontrib><creatorcontrib>Jones, Liz</creatorcontrib><creatorcontrib>Meyer, Julienne</creatorcontrib><creatorcontrib>Spilsbury, Karen</creatorcontrib><creatorcontrib>Killett, Anne</creatorcontrib><creatorcontrib>Wolters, Arne T</creatorcontrib><creatorcontrib>Peryer, Guy</creatorcontrib><creatorcontrib>Goodman, Claire</creatorcontrib><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>MEDLINE - Academic</collection><collection>PubMed Central (Full Participant titles)</collection><jtitle>Age and ageing</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Gordon, Adam L</au><au>Rand, Stacey</au><au>Crellin, Elizabeth</au><au>Allan, Stephen</au><au>Tracey, Freya</au><au>De Corte, Kaat</au><au>Lloyd, Therese</au><au>Brine, Richard</au><au>Carroll, Rachael E</au><au>Towers, Ann-Marie</au><au>Burton, Jennifer Kirsty</au><au>Akdur, Gizdem</au><au>Hanratty, Barbara</au><au>Webster, Lucy</au><au>Palmer, Sinead</au><au>Jones, Liz</au><au>Meyer, Julienne</au><au>Spilsbury, Karen</au><au>Killett, Anne</au><au>Wolters, Arne T</au><au>Peryer, Guy</au><au>Goodman, Claire</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Piloting a minimum data set for older people living in care homes in England: a developmental study</atitle><jtitle>Age and ageing</jtitle><addtitle>Age Ageing</addtitle><date>2025-01-06</date><risdate>2025</risdate><volume>54</volume><issue>1</issue><issn>0002-0729</issn><issn>1468-2834</issn><eissn>1468-2834</eissn><abstract>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.
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.
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).
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.</abstract><cop>England</cop><pub>Oxford University Press</pub><pmid>39812411</pmid><doi>10.1093/ageing/afaf001</doi><orcidid>https://orcid.org/0000-0002-8938-4893</orcidid><orcidid>https://orcid.org/0000-0003-3597-1061</orcidid><orcidid>https://orcid.org/0000-0002-6908-0032</orcidid><orcidid>https://orcid.org/0000-0001-7326-4750</orcidid><orcidid>https://orcid.org/0000-0003-0425-6911</orcidid><oa>free_for_read</oa></addata></record> |
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| ispartof | Age and ageing, 2025-01, Vol.54 (1) |
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| source | Oxford University Press Journals All Titles (1996-Current); MEDLINE |
| subjects | Aged Aged, 80 and over Datasets as Topic Delirium - diagnosis Delirium - epidemiology England Feasibility Studies Female Geriatric Assessment - methods Homes for the Aged - statistics & numerical data Humans Male Nursing Homes Qualitative Paper Quality of Life |
| title | Piloting a minimum data set for older people living in care homes in England: a developmental study |
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