Unlocking Data to Inform Public Health Policy and Practice
In England, many services that are paid for using taxpayers’ money are decided on and funded by local commissioners such as Local Authorities (LAs) and Clinical Commissioning Groups (CCGs); although, CCGs are set to be replaced by Integrated Care Systems (ICSs) within 2022. LAs are responsible for publicly funded social care (e.g. home-based services) and some public health services (e.g. sexual health services). CCGs are responsible for funding most healthcare services in local areas. All local decision makers aim to fund services for public benefit; for example, promoting and protecting health and preventing ill-health, while ensuring ‘value for money’ for taxpayers. Such services and local decision makers often collect data to inform their processes. This data is used to support the services provided for individuals, but also for administrative reasons. This data could be used more often to help inform improvements to current services and funding of new services, but also to support research by universities. However, as this data could include potentially personal and sensitive information, it is important that it is protected and only shared in circumstances when there is a clear and legal reason that would benefit the public.
What did we aim to achieve?
We set out to understand:
What data is available to local decision makers.
How they currently use it.
How data can be used and potentially shared with parties who want to use it for public benefit.
Furthermore, we aimed to explain how to best use and share data legally with clear reasons for its use. An example would be helping local decision makers calculate which services are considered ‘value for money’ or not, to allow local decision makers to best use money available to them.
How did we do it?
We first identified examples of when data has been used and legally shared to inform local decision making. We then produced a detailed list of what data these local decision makers have available. These examples and data were discussed with people who work within two LAs and a CCG, within three universities, and members of the public. This allowed us to further explore what is important to consider when using such data to inform local decision making or research purposes, and how the use of such information could be made more transparent and understandable for the public.
Patient and the public involvement in the project
A lay co-applicant (KS) helped with every aspect of the research project. We additionally set up a public advisory group to advise on the public workshops, interpretation of the findings, and co-design study outputs.
What did we discover?
Local commissioners are using and sharing data in various ways to benefit the public, such as identifying if certain people may be at-risk of a bad event; for example, older people at-risk of falling who would then require hospital and perhaps social care. However, local commissioners are not always clear in how they report the use of such data, who has control or is using such data, and if any public benefit was ever achieved from recording this data. We attempted to develop an understanding of what data was available for adult social care services. However, we were unable to achieve this aim because of issues to do with the amount of time, effort, and types of staff available within the relevant local commissioners to understand the data available. By discussing the need and use of data with LA and CCG staff, and members of the public, we identified a variety of areas to improve the responsible use of data. One thing discussed was the need for trust and understanding between everyone involved about how and when data is being used, what data is used (for example, if it reflects an individual or group), but also the public benefit of using such data. When analysing data, researchers and local commissioners need to communicate better and come to a joint understanding of how such data can be accessed and used for public benefit. This includes information about what services are considered value for money and who may be paying for what aspects associated with the services across CCGs and LAs, and if there is any chance spending may not remain within budget. Overall, there are ways to responsibly use data which protects the public and could provide public benefit such as treating or avoiding ill-health; however, clearer communication and building trust is needed.
How will this research change health and social care?
We believe our research could start to change and improve how researchers and local decision makers use locally available data to decide which services to fund to benefit communities. This includes suggested information to be made clearer to the public.
This blog was written by Matthew Franklin, supported by the authors from the Unlocking Data to Inform Public health Policy and Practice report Tony Stone, Susan Baxter, Annette Haywood, Sebastian Hinde, Daniel Howdon, Monica Jones, Anthea Sutton, Mark Clowes, Suzanne Mason, James Lomas, Louise Brewins, Philip Truby, Michelle Horspool, Kamil Sterniczuk, Jennifer Saunders and Christopher Gibbons.
The project is funded by NIHR Public Health Research (PHR), with in-kind support from the NIHR Applied Research Collaboration Yorkshire and Humber's Health Economics, Evaluation and Equality.
29 March 2022