Q-DaPS

This project brings together experts in qualitative research and a commercial company experienced in working with academic and health service organisations.

The NIHR SPCR-funded Qualitative Data Preservation and Sharing (Q-DaPS) project brings together experts in qualitative research and a commercial company experienced in working with academic and health service organisations. The aim of the project is to design, test, and evaluate a prototype qualitative data repository for health and social care research hosted in a Trusted Research Environment (TRE). The repository would offer a secure cloud-based centralised hub for the archiving and re-use of many different kinds of both identifiable and anonymised qualitative data.

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, in the UK, 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.

Local Investigators: Fiona Stevenson (Co-PI), Karen Lloyd (Senior Research Fellow)
Core study team: Geraldine Leydon Co-(PI), Barbara Caddick (Co-I)
Co-applicants: Rebecca Barnes (Oxford), Carolyn Chew-Graham (Keele), Sue Latter (Southampton), Lisa Roberts (Southampton), Emma Pitchforth (Exeter), Catherine Pope (Oxford), Benjamin Saunders (Keele)
Katrina Turner (Bristol), Sue Ziebland (Oxford), Ian Maidment (Aston), Lynn Laidlaw (Public Co-Applicant), Ali Percy (Public Co-Applicant)
Funder: NIHR School for Primary Care Research
https://www.spcr.nihr.ac.uk/research/projects/q-daps
Duration: 01/10/2022 – 30/09/2024