The £2.2million NIHR funded DACHA study (Developing research resources and minimum data set for care homes' adoption and use) is an ARC East of England supported study being led by the University of Hertfordshire.
The four-year project started in November 2019. It is divided into five work packages. The 14 collaborators come from seven ARCs, nine universities, the National Care Forum, The Health Foundation, and the Alzheimer’s Society Research Network.
Work Package 1: Research in and with care homes
This work responds to the research brief’s identification of the need for evidence that can both improve the productivity of care home research and capture the key measures and outcomes used in UK care home research that could inform a minimum data set (MDS). The work package leads are Dr Sarah Kelly (University of Cambridge) and Dr Guy Peryer (University of East Anglia). You can read more about Work Package 1 here.
Work Package 2: Creation of an individual patient data (IPD) repository of UK care home trials
This work package will develop a repository of individual resident data from existing care home trials. Study characteristics (inclusion/exclusion, trial methodology, and intervention details), care home specific details (staff ratios, staff retention, bed size, case mix, ownership) and individual participant level data (demographics, outcome measures, resource use, and medications) will be included in the repository. Work Package 2 is led by Lisa Irvine (University of Hertfordshire) and Dr Jenni Burton (University of Glasgow). You can read more about Work Package 2 here.
Work package 3: Development and implementation of a MDS
The aims of this work package are to develop an understanding of how a MDS could work in the UK context; identify care home generated data that could contribute to a MDS; and generate a matrix of potential variables and their characteristics, and identify stakeholder priorities for inclusion in a MDS. The work package leads are Prof Barbara Hanratty (Newcastle University), Dr Gizdem Akdur and Massirfufulay K Musa (University of Hertfordshire). You can read more about Work Package 3 here.
Work Package 4: Data linkage of existing administrative data sources to inform the prototype MDS
The NHS collects a huge amount of data, including the electronic medical record in general practice, administrative hospital data, and operational data sets from the emergency services, urgent care and community health. Local authorities also collect data on packages of publicly funded social care and needs assessments. This work package aims to identify, document (create metadata) and link these existing data sources together to establish a basis for the MDS. This will demonstrate what a MDS could look like without the need of additional data collection by care homes. The work package is led by Arne Wolters and Adam Steventon (The Health Foundation).
Work Package 5 Longitudinal pilot of the MDS
This work package will assess the feasibility of collecting data directly from care homes and matching this to native data to populate a complete MDS; assess the quality of the MDS data, comprising care home-collected data alongside native data, to create a MDS with the minimum number of scales/attributes required; demonstrate the utility of the matched MDS data to stakeholders (ICSs, CCGs, local authorities, providers and residents and their families); and systematically assess potential barriers and facilitators to wider implementation of the MDS. Work Package 5 is led by Prof Adam Gordon (University of Nottingham) and Ann-Marie Towers (University of Kent).
In the last ten years research in and with care homes has increased in recognition of the complex health and social care needs of this population
Care homes, visiting clinicians, commissioners and regulators collect information about residents, needs, preferences, and care.
There is no consistent approach across organisations as to how this information is organised, managed and shared.
Care home residents are in the last year(s) of life and some are high users of the NHS services
To establish what data need to be in place to support research, service development and uptake of innovation in care homes.
To synthesise existing evidence and data sources with care home generated resident data to deliver an agreed data set - minimum data set (MDS) - that is usable and authoritative for different user groups.
1) Guidance for researchers and commissioners on health care implementation in care homes, resource on assessment tools and core outcomes in care home research;
2) A repository of care home RCTs to support secondary data analysis and inform MDS development that can support more research and useful findings for priority questions, without the expense and burden of involving care homes and residents in research
3) Evidence on what needs to be in place for MDS to support staff uptake, resident assessment care and improved outcomes
4) An implementation strategy for MDS that links NHS, social care and care home generated data
5) A prototype MDS to inform commissioning, needs assessment and care delivery.
You can read more about the up-to-date outputs of DACHA here.
Who is involved
University of Hertfordshire: Prof Claire Goodman, Dr Gizdem Akdur, Lisa Irvine, Massirfufulay Musa
University of Cambridge: Dr Sarah Kelly, Andy Cowan
University of East Anglia: Dr Guy Peryer, Dr Anne Killett, Priti Biswas, Jess Blake
University of Exeter: Dr Iain Lang
University of Glasgow: Dr Jenni Burton
University of Kent: Ann-Marie Towers
University of Leeds: Professor Karen Spilsbury
Newcastle University: Professor Barbara Hanratty
University of Nottingham: Professor Adam Gordon
National Care Forum: Professor Julienne Meyer, Liz Jones
The Health Foundation: Arne Wolters, Adam Steventon
PPI Representative/Alzheimer’s Society Research Network Volunteer: Sue Fortescue