NIHR ARC East of England is working with partners to strengthen cross-organisational professional regional networking in the region to address challenges relating to the safe and effective sharing of data for health and care research. In this blog, we share the discussions from the recent ARC East of England Population Health Data Advisory Panel meeting.
Health and care research is crucial to better understand factors that increase the risk of developing disease and disease trends; identify new and emerging threats to health and develop new methods of treatment and approaches to providing care services. However, this can only take place if researchers are able to access and analyse the rich range of data held by health and care services. If this information is to be shared with researchers, it is essential that patients and the wider public are supportive of their personal data being used in this way and they are confident in the handling of this.
Ensuring the safe and transparent use of data and information for the public good is a complex task. For example, undertaking a research study that involves multiple locations may involve multiple applications to access data, requiring liaison with multiple different organisations, some of which may be undergoing organisational change. We discussed these issues at the first meeting of the NIHR ARC East of England Population Health Data Advisory Panel in October 2022.
"The Advisory Panel meets twice a year and brings together researchers from the NIHR ARC, public representatives and partners from the health and care systems to discuss the use of data to identify ways of improving the health of people living in the East of England and elsewhere."
Sian Evans, Co-Lead of ARC East of England Population Evidence and Data Science
Following the Advisory Panel meeting, a workshop was held to discuss the sharing of health and care data for research in more detail and a working group was set up to identify how to address the issues identified. This blog summarises this work.
Identifying challenges of data collection and sharing for research
During the workshop, we identified a number of issues which can be grouped into three key themes:
- Understanding, interpretation and communication: A recurring theme was the importance of clear consistent information on health and care data, and its use. Readily accessible and understandable information is essential in helping patients and public to meaningfully engage in discussions on the use of their health data for research. Data protection legislation and information governance guidance that informs the use of health and care data for research is complex. Even researchers and staff working in health and care find it difficult to keep up-to-date with the latest information and the everchanging landscape. These issues are further complicated when working across geographical areas and needing to work with multiple NHS Trusts and research organisations with different approaches and points of contact. An example of the differences includes the names of the specialists in this area as their titles differ depending on their settings: people advising on the legal issues around the use of data are known as 'Information Governance Specialists' in the NHS and 'Data Protection Officers' in research settings.
- A skilled workforce: The importance of being supported by experts who have knowledge of data protection or information governance was highlighted. Advice and guidance from such an expert make a big difference to how effectively a research project using health and care data progresses. However, this specialist workforce is small and rapid staff turnover can cause delays in getting feedback on research plans. Once agreements to share data are in place, lack of staff with skills to extract and prepare the data for sharing can add further difficulty and delay.
- National policy and guidance: The rapidly changing landscape in the health system, with new structures and new approaches to how care is delivered, and newly emerging sources of data, mean that national guidance must be regularly updated to keep up with local requirements. Any delays in these national updates can cause uncertainty for those working with data in local health, social care and research environments as there is a risk of differing interpretation of existing guidance between different organisations.
What can we do?
To address these issues, the working group have made recommendations. Firstly, we will strengthen the links between specialists in information governance and data protection across the East of England. Membership of the East of England Information Governance Network, which brings together information governance leads from NHS and local authorities in the region, has been extended to also include Data Protection and Information Governance Leads from universities. Work is also underway to compile a register of specialist contacts in relevant organisations within the region.
If you are an information governance or data protection specialist and are interested in linking into the regional professional network, please contact Katia Asfalto on ka561@medschl.cam.ac.uk.
There are also plans to draw out key lessons from work with public and patient groups across health and care systems within the region on the use of data for population health purposes.
Authors:
- Sian Evans
- Helen Green
- Louise Lafortune
- Jane Marley
- Adam P Wagner