Principal Investigators: Prof. Fiona Stevenson,, Professor of Medical Sociology, University College London, Head of the Research Department of Primary Care and Population Health; Prof. Geraldine Leydon-Hudson, , Professor of Primary Care Research, University of Southampton .

Co-applicants:

Dr Barbara Caddick Senior Research Associate in Primary Care and Honorary Senior Research Associate Department of History, University of Bristol; Dr Rebecca Barnes, Senior Qualitative Researcher, University of Oxford; Prof Carolyn Chew-Graham, Professor of General Practice Research, Keele University; Prof Sue Latter, Professor of Health Services Research, University of Southampton; Dr Emma Pitchforth , Senior Lecturer & Senior Research Fellow in Primary Care, University of Exeter. Prof. Catherine Pope, Professor of Medical Sociology, University of Oxford; Dr. Benjamin Saunders, Lecturer in Applied Health Research, Medical Sociology, University of Keele; Prof. Katrina Turner, Professor of Primary Care Research, University of Bristol; Prof Sue Ziebland Professor of Medical Sociology and Co-Director of the Medical Sociology and Health Experiences Research Group (MS & HERG) in the Nuffield Department of Primary Care Health Sciences, University of Oxford.

Colaborators:

Dr Ian Maidment, Reader in Clinical Pharmacy at Aston; Lynn Laidlaw is an experienced public contributor involved in UK wide and international research projects; Ali Percy, public co-applicant.

Start: 1 June 2022

End: 31 May 2024

Background: Researchers may use different types of data to increase understanding of issues in relation to health and social care.  Data may include audio or video recordings of interviews, focus groups (group discussions), and consultations between professionals and patients / service users, as well as written data, such as notes about research. These types of data are referred to as qualitative data. Funders of research increasingly encourage researchers to make their data available to be reused by other research teams. This is in part because qualitative data collection takes a lot of time and costs a great deal of public money. It is also considered ethical to make maximum use of data. Importantly, many people who participate in research tell us it is important to them that their contribution to research is used as much as possible.

The project: Despite the increasing need and wish to safely store and share qualitative data, there is no central place to store and provide access to qualitative research data collected about health and social care. We will work with a company that specialises in keeping data secure and has a track record of working with university and health care organisations to develop secure digital storage (a repository) for qualitative data about health and social care. Part of the work will involve taking account of the views of members of the public about consent and use of data as well as data security.  This will make sure the guidelines we put in place for people putting data into the repository or using data from the repository are acceptable to both researchers and participants in research.

We will publicise the repository to encourage researchers to store their study data and allow access for researchers to answer their research questions.  We will also provide a description of what is in the repository on a website so researchers can plan if they could use data from the repository rather than collecting new data.  We will charge for use of data so the repository can be self-funding and sustainable in the long term.

Expected impact: Increasing access to existing qualitative data from research projects in health and social care will make better use of what we already know about health and social care, saving time and money that would otherwise be spent on collecting new data. It will also satisfy the expectations of funders of research that data should be reused where possible. This project is particularly important as the COVID 19 pandemic has made data collection even more challenging in health and social care sites meaning we need to make the best use of the data we already have.