To mark the first anniversary of the Data Saves Lives strategy, Nicola Hamilton, Head of Understanding Patient Data, reflects on some of the conversations that have taken place with the public and their importance for achieving the strategy's ambitions…
It has been one year since the publication of the Data Saves Lives strategy in June 2022. The last year has been a challenging time for the NHS due to the merger of NHS England, NHS Digital, NHSX and Health Education England, as well as the creation of Integrated Care Systems, dealing with strikes and tackling long waiting lists. Throughout all this, the NHS has demonstrated the strength of its commitment to engagement with patients, the public and healthcare professionals when it comes to the use of health data.
This started with getting more information out in the public domain, for example with publishing the “12 secure data environment policy guidelines” and a “simple explanation for secure data environments” in September 2022. Whilst this communication was broadcast-style in its approach, more information about the NHS’s plans in this space is welcome and improves transparency. These publications have also enabled further conversations, research and resources, for example Imperial College London’s “NHS Data: Maximising its impact for all” report and the University of Manchester’s “The Data Jigsaw: Secure Data Environments” video, both published in April 2023, and the ways in which Secure Data Environments and patient involvement can support clinical trials in the Lord O’Shaughnessy Review, published in May 2023.
One of the largest developments since the publication of the Data Saves Lives strategy has been the NHS England Data for Research & Development Programme, which is a co-funder of Understanding Patient Data. Its Head of Strategy, Rebecca Cosgriff, sits on our Steering Group. The programme runs up to April 2025 and is investing in making linked data securely accessible for research purposes. In this update it was announced that funding had been awarded to eleven NHS-led teams to develop Sub-National Secure Data Environments (SDEs) that will cover approximately 5 million people each, and collectively all of England. These SDEs will make the most of connectivity to their local communities, including for Patient and Public Involvement and Engagement, and engagement at a local level has already been taking place. Along with the National NHS England SDE, these form the NHS Research SDE Network. The programme has recently had its funding confirmed, coinciding with May’s Life Sciences Council. UPD is represented in the Comms and PPIE working group, and will be working closely with the Network over the coming months to ensure delivery is shaped by meaningful engagement, and communicated in a way that people can relate to and understand.
This work is a significant step in a wider programme of patient and public engagement in this space. The NHS England Transformation Directorate, responsible for setting the national policy on SDEs, is intending to do more public engagement in the coming months, in line with its commitment to the Data Saves Lives strategy. This engagement has started with a consultation on the proposed draft of the data access policy, open for feedback until Friday 23rd June. Larger scale public engagement is being designed and will take place later this year and early 2024.
In this new phase of Understanding Patient Data, as a result of the significant changes to data infrastructure within the NHS, we are focusing a lot of our efforts on communicating about these changes, developing resources that can be used to have conversations about data use, and promoting opportunities for the public to feed into the design and operation of these systems. This has been supported by NHS England’s financial contribution to UPD for the first time, highlighting their commitment to dialogue with the public and their support for independent, factual guidance and resources too.
This isn’t to say the commitments have all been met and NHS England can relax! Public engagement is not something that can be done once and held onto forever. At a national level, it should be systematic, robust and recurring on the big questions, in order to monitor attitudes and changes in opinions, and respond accordingly. This can happen alongside more bespoke engagement on specific topics or at a regional or local level. With the further developments to SDEs, the procurement of the Federated Data Platform, and the improvement of access to real-time data via new Clinical Trial Acceleration Networks, public engagement on the use of data will continue to be essential.
Understanding Patient Data will both be supporting NHS England to engage with the public and making sure it listens to what it hears. To find out more about our work please go to https://understandingpatientdata.org.uk or drop me an email at hello@understandingpatientdata.org.uk.