By Grace Melvin, Policy Officer, AMRC

Published: 22 June 2021

NHSX have published their draft data strategy for health and social care, which builds on the progress made in technology and data sharing to tackle COVID-19.

Joining up data for health, care, and research  

The benefits of collecting, linking and using data to improve health are immense – this has been highlighted by the pandemic, and long demonstrated by medical research charities. Great examples include Diabetes UK’s work to tackle preventable amputations, and Kidney Research UK’s work to improve dialysis treatment. Neither of which could have happened without connecting data from multiple sources. 

NHSX’s goal to connect data more effectively from different parts of the system can only be a good thing and is a welcome step in the right direction. For too long, siloed uses of data have hampered progress. It’s helpful to see these different uses presented together for the first time. Better joined-up data will mean that patients can receive improved care, both from the NHS and in care homes; that the NHS can plan more effectively; and that researchers can more easily access data to develop new treatments.   

Getting it right 

These important ambitions must be balanced with the need for trust - an essential element of which is transparency and good communications. 

The recent backlash against NHS Digital’s new system for collecting GP data for research and planning has brought into sharp focus the problems that arise when the public and healthcare professionals feel blindsided. People need to understand how data is being used, by whom, and what protections are in place to keep their data secure. This data is sensitive so we need to know it is being used in the safest way possible. 

It is good to see that the NHSX strategy starts with the patient and their access to their own data. This is the first step towards transparency and towards improving understanding on what data is collected about people, and how it is used.

The devil’s in the detail… 

But, and there is always a but, caution is needed.  While having an overarching vision is helpful, much will depend on how it is implemented in practice. 

There must be more clarity and openness on what choices, if any, patients will have.  We are worried, for example, that there is no mention of the national data opt-out. Confusion over different opt-outs has exacerbated concerns about the collection of GP data. People must be informed and aware of the choices they have.  

The strategy also sets out the need for new legislation. While some of the proposals are long overdue (for example defining the purposes for which NHS Digital can share data), others will need careful consultation and appropriate safeguards to ensure that public confidence is not further undermined.

And what about researcher access? For charities, ensuring that researchers can access data in a responsible way, with proportionate processes and access to ‘Trusted Research Environments’, will be crucial. The strategy sets out some encouraging steps, including a focus on using data more effectively to improve the recruitment of patients to clinical trials.

What next? 

Charities have valuable expertise which can contribute to the debate. They not only use data in the research they fund, but are also integral conduits for consulting and understanding their patients’ attitudes including towards data sharing. We welcome the proposed commitment to work with partners including research charities to help develop best practice and ensure meaningful involvement.   We look forward to engaging further with NHSX and encourage them to listen to the views of public, patients, and charities as they continue to develop the plans.