Data Sharing in Health Care Research and Innovation - How Is Our Data Being Used?
How to use health data is a hot topic in health care research and innovation, with crucial questions around how to best utilise health data while still complying with data subject rights and maintaining public trust.
Health Data Research UK Announces Nine New Projects Using Large Scale Linked Health Data
In summer 2020, the UK Government established the National Core Studies (NCS) programme to focus on critical questions for the COVID-19 response. Six studies were set up, including the 'Data and Connectivity' study led by Health Data Research UK (HDR UK) in partnership with the Office for National Statistics. The aim of this study is to connect UK health data to support and accelerate research on COVID-19.
The study funded 12 urgent COVID-19 research projects in the first half of 2021 on diverse topics - from transmission and epidemiology, to vaccines and pharmacovigilance, to economic and employment impacts.
In September 2021, HDR UK announced £2 million more funding through the NCS study to further support the use of data and analytics for COVID-19 research, and in November, has announced the nine new projects that it is funding. The projects will take large-scale linked health data, and use advanced analytics, modelling, statistical and machine learning techniques to answer vital questions about COVID-19 and further support the COVID-19 response. It is also intended that these studies will create additional data linkages and improve the quality of data for future projects.
The Importance of Health Data and Public Trust
Many of the projects funded might not have been possible, or would have been much less useful if it weren't for the enormous patient data sets held by the NHS. The NCS study recognises the massive potential of this data and is funding projects to unlock and realise its value. Large scale data sets, and sharing of data by healthcare providers, are vital, not only for research and analysis, but also for innovation and AI technology. In particular, large, high quality data sets are essential for training and making the most of AI tools, which encompass some of the most exciting new tools that will be critical to the healthcare of the future.
However, a key issue is public trust. Transparency is a key requirement of data protection law. Organisations must inform data subjects what data they are collecting about them and how it will be used. As individuals, we feel uncomfortable thinking that third parties may hold sensitive personal data about us, and that we may not even be aware. Data sharing must be transparent, and the public perception of it must be as positive and valuable - and for their benefit, rather than purely for profit.
There are a number of examples of what happens when this goes wrong. Care.Data, the NHS England data sharing project in 2014, was condemned due to inadequate communication with the public about what was happening with their personal information. More recently, the launch of NHS Digital's General Practice Data for Planning and Research (GPDPR) data collection project was delayed this summer because of data protection concerns, and is re-considering and clarifying how it will comply with data protection law when conducting further public engagement.
There is now increased focus on transparency and public engagement, and ensuring that the public:
- can trust that their confidentiality will be protected
- know how their data is being used
- feel ownership of their data
The Future of Data in Health and Care
The Department of Health and Social Care’s (DHSC) draft policy paper, Data Saves Lives: Reshaping health and social care with data, notes that the power of data was "one of the most impactful tools at our disposal" in the COVID-19 response. The paper sets out a DHSC mission statement and strategy to unleash the unlimited potential of data in health care. One of its three key priorities is to improve transparency so that members of the public have control over how their data is being used. Key proposals to improve access to data include:
- using the NHS app to give individuals more control over and access to their own health and care data
- new legislation requiring health and social care organisations to share anonymised data for the benefit of the health and social care system
Reactions to the draft paper have been mixed. Some privacy campaigners consider that it is rushed and does not prioritise patient's rights highly enough. However, the National Data Guardian’s response to the draft policy paper is strongly in support of the DHSC's strategy, subject to a number of suggested actions to assist with safeguarding patient data and build transparency and trust with the public.
Evidently, the balance between data sharing and data subject rights is a crucial topic for research and innovation in healthcare and life sciences. At the 2021 PING Conference, which was held in collaboration with IQVIA, entitled 'UK Life Sciences Opportunities in a Changed World', we heard from Caroline Cake, the CEO of HDR UK. Caroline discussed the increased number of projects looking at health data and the importance of health data to innovation in life sciences. The Conference also highlighted the need for public trust over use of their data.