How do we make talking about health and care data as easy as ABC?

James Friend, Programme Director for the London Health Data Strategy, responds to the latest report to show the importance of publically addressing concerns around data use and security.

This month I read with interest the latest report from Reform UK on the power of health to transform population health, following its roundtable featuring Dr Tim Ferris, NHS England National Director for Transformation. It is a neat summary of some of the current challenges and opportunities the use of data in our health service face.

It is strange that we collectively have concerns around the sharing and use of health data that we don’t have around other personal information such as finance. For decades we have used our bank cards in the ATMs of different banks in different countries, confident they keep our data secure so that we could access our money and withdraw cash. A large number of us now do this via the wallets on our phones and use apps to access our financial information and have been doing that now for a number of years. But when we talk about joining up and accessing health information, people are concerned. That’s why I think we need to be talking about ABC – making information on data use accessible (easy and transparent), talking more widely about the known benefits and using this to build and maintain public confidence in how their information is used.

There are numerous current challenges facing healthcare systems including making the right thing to do for the patient be the easiest thing to be done by the clinician. There are truly exciting areas highlighted by the report where the use of data can improve the accuracy, speed, and effectiveness of healthcare interventions, leading to benefits and better health outcomes for individuals and populations:

  • Improved targeting of high-risk populations: By analysing data from electronic health records, public health databases, and other sources, healthcare providers and policymakers can identify populations that are at higher risk for certain health conditions and diseases. This allows for targeted prevention actions to be implemented, potentially reducing the incidence and severity of these health issues.
  • More effective disease surveillance and outbreak response: By analysing social media data, search engine queries, and other sources of digital information, public health agencies could identify and respond to disease outbreaks more quickly and effectively,  reducing their impact on populations.
  • Enhanced precision medicine: By analysing large amounts of genomic, clinical, and other health data, healthcare providers could tailor treatment plans to individual patients, improving their outcomes and reducing the risk of adverse reactions.

So if these are the wins, why haven’t we seen them yet? As touched on in the report there are concerns including around data privacy and security.

Ensuring that data is collected, stored, shared and used safely,  in compliance with relevant regulations, is crucial to maintaining public confidence in data-driven healthcare. At the London Health Data Strategy programme we recognise these concerns which is why we commissioned the Citizen’s Summit, with additional workshops on specific topics like opting out, to increase our understanding. We also have three citizen representatives on our programme, have helped establish a London-wide Independent Information Access Group which has citizen representatives and considers data requests.

As well as this it was a condition that our four pathfinder projects, which looked at asthma, cancer, childhood immunisations and high blood pressure, had a dominant public and patient involvement and engagement element to their work, providing valuable insights to shape their thinking (see here for the outcomes).

Our work revolves around the principle of the Six Safes. The Five Safes framework is well known within data services:

  • Safe people: Only trained and accredited users and researchers access the data and they must not reidentify data subjects.
  • Safe projects: Data is only used for ethical, approved projects with clear public benefit.
  • Safe settings: Secure technology is in place and data never leaves the Trusted Health Data Environment.
  • Safe data: Data is depersonalised to protect privacy.
  • Safe outputs: All outputs are checked to ensure subjects cannot be identified.

On top of these, London added a sixth – safe return – so that any discoveries made by using the data can be returned to benefit individuals. For example if information from people with diabetes was used for research, and that research found benefits for people with diabetes, we would expect that their GPs could be informed so that those benefits could get to people quicker.

This is an exciting time where we stand on the cusp of opportunity. If we can transparently take the public that we are here to serve with us, in five years’ time we could have a data-driven health and care system, contributing to better real time care for citizens, individualised care plans for individuals, and preventative health plans for populations which is unrivalled anywhere in the world.