The 'Data Saves Lives: Reshaping Health and Social Care with Data (draft) Strategy' - Which? response

Following the publication of “Data saves lives: reshaping health and social care with data (draft)” on the 23rd June 2021 we would like to offer our thoughts on the visions and proposals outlined. We appreciate that the Department for Health and Social Care (DHSC) has published a survey for people and organisations to respond to, however we would prefer to communicate our thoughts in this written submission as we have a level of detail and nuance in our response that is not possible to communicate via the survey format. We trust that this will be a welcome addition and will complement the survey responses you receive.

Which? is the UK’s consumer champion. As an organisation we’re not for profit - a powerful force for good and here to make life simpler, fairer and safer for everyone. We fund our work mainly through member subscriptions. We are not influenced by third parties – we never take advertising and we buy all the products that we test. Which? works in pursuit of its charitable objects for the public benefit.

We began working on Health Data in early 2020 in response to an explosion in popularity of consumer health and lifestyle wearables, apps and services. Now, against the backdrop of Covid-19, UK consumers are more aware than ever of the role individuals’ data can play in personal and public health. Equally they are aware of the issues and nuances around data sharing; they care and want to understand and control how data about them is collected, with whom it is shared, for how long, and for what purpose. We believe there is a vast opportunity to leverage data from individuals and - if handled appropriately - this data can improve healthcare; indeed the health of patients.

Moving to a world in which healthcare is data driven requires a careful shift: openness, transparency and engagement will be key to success. Which? has been working with a consortium of businesses and organisations in a Health Data Sandbox convened by data consultancy Ctrl Shift. Phase 1 of this project is complete and a report into the opportunities arising from a trusted Health Data ecosystem will soon be published by Ctrl Shift.