Assembling the data jigsaw: MSK research using linked social care data

  • Research type

    Research Study

  • Full title

    Assembling the Data Jigsaw in Greater Manchester: improving MSK research to advance patient care and inform patient policy using social care data linked to hospital data

  • IRAS ID

    320949

  • Contact name

    Will Dixon

  • Contact email

    Will.Dixon@manchester.ac.uk

  • Sponsor organisation

    University of Manchester

  • Duration of Study in the UK

    1 years, 0 months, 28 days

  • Research summary

    Assembling the Data Jigsaw is a large research programme bringing together pre-existing and novel health data to answer questions about arthritis of importance to patients. The programme is funded by the Oliver Bird Fund (Nuffield Foundation).

    This is the sixth study in the programme. It links extracts of hospital outpatient data and Adult Social Care for one locality in the North of England. The study addresses two core questions i.e.:
    (1) What is the proportion of hospital rheumatology outpatients who use council funded formal social care services? Does social care need, and service receipt vary by MSK condition?
    (2) Amongst those receiving council funded care, what proportion also receive informal care (care from family and friends) and what types of activities of daily living do social care services provide help with? What are the costs of social care for patients in these two groups?

    This study will run until January 2025 using retrospective hospital and adult social cate data. The data will be prepared by hospital and council staff. The data will be made available to the research team as a de-identified linked dataset in a secure and highly restricted data platform.

    A PPIE workshop was held to ascertain support for, and listen to any concerns about, the use of the linked data to address the study’s research aims.

    In addition to running a PPIE workshop, the programme ran an awareness-raising campaign across the local area from May – June 2023. This included posters in bus stops, digital phone kiosks and National Rail, as well as leaflets displayed in GPs and local community centres. To accompany the campaign, we set up a website to explain the programme’s work and how people’s health records are being accessed and linked in a secure data environment: https://thedatajigsaw.co.uk/.

  • REC name

    Social Care REC

  • REC reference

    24/IEC08/0004

  • Date of REC Opinion

    7 Feb 2024

  • REC opinion

    Favourable Opinion