Dealing with data - the case for greater sharing of health records

19 December 2017


Patients know that the NHS having access to their data can help improve and speed up care.  Overwhelmingly they want professionals across the NHS to more easily have access to, and share, their data.  But how patient data is used, shared and managed is a very sensitive issue. Inappropriate sharing or accidental loss of patient information is likely to cause considerable damage –arguably more than when social media or even financial data is compromised. Our survey shows that 92 percent of UK adults are happy to have their data shared between different parts of the healthcare system (ie the NHS). But there is a caveat. They are far less sanguine about how those outside the traditional system, eg healthcare technology companies, might use their data. Nearly fifty percent of UK adults say they don’t trust them and under 20 percent say that they would be happy for technology companies to have access to their health records.  

Yet the theoretical arguments for sharing health data more widely and effectively - at least within the NHS   – are largely won. Not only are there considerable benefits in clinical and health outcomes, but there are also major operational and financial gains to be had too.

Patients seem to agree.

Even when patient data has been shared with a technology business to secure a better course of treatment, more timely interventions and more accurate clinical diagnosis – such as the Deepmind case-study at the Royal Free Hospital  – there have been very negative reactions from both the research community and the public. But with healthcare services and resources under intense and growing stress, technology providers will have a vital role to play in alleviating that pressure. They need to show that they can benefit both the wider health system and patients. They can grow the trust they need by operating transparently and demonstrating how, far from creating risks to patients, they can play a key role in improving outcomes.

Nevertheless, concerns about data privacy are driving the healthcare system away from greater sharing and building fences around patient data within a specific entity. Where patient data has to be shared within the NHS, several data governance agreements will need to be agreed and signed between individual entities. This is erecting a barrier to higher quality patient care. Healthcare professionals are, in effect, unable to see the full picture of a patient before they can provide a course of treatment or other intervention.

Patients voice blog image

Despite the complexities and challenges, there are a number of areas where different stakeholders in the system should start taking actions that could build trust and accelerate progress.  

  1. The first is direction and guidance from the Department of Health and the wider NHS. This needs to be sufficiently flexible to allow for implementation locally. Next is the vendor community who need to evolve their offerings to tackle the issues of trust and control that patients have. For example, Patients Know Best (PKB) gives patients control over who has access to their data and how much of it any third-party is able to see.
  2. Trusts need to discuss data governance at the board level and bring in the full range of opinions – clinical, operations, nursing and technology – to achieve a rounded view. This is critical as while data may be stored, managed and processed in IT systems, it is not an issue for technology alone to solve.
  3. And finally, is the need to educate and empower the public. They need to be engaged in managing their own data, what it means to share it and how they can do so more securely. After all, people have become accustomed to using a mobile app for secure banking from rather than visiting a bank branch. Whilst healthcare is different, a similar mindset is needed.

Of course, this is no overnight transition.  It’s a journey whose destination is not set. However, the benefits from using and sharing data more effectively are substantial, so it needs to be a priority for all stakeholders in the health system. It’s time to turn plans into actions. And the time to start is now.