The benefits of digital health are discussed widely around the world. The prospect of increased efficiency and enabling patients to take a more hands-on role in their own medical care are considered positive outcomes by many. However, concerns over data privacy and the prevalence of data breaches in the sector are creating barriers to the adoption of digital health in the United Kingdom (U.K.).

With this in mind, we recently hosted a roundtable event in London, inviting several experienced and respected individuals from all aspects of the healthcare sector to discuss some of the most pressing issues on the journey to digital health. During the event there were a number of different issues explored, and although there were a lot of opinions in the room, and a few debates, the participants all ultimately had the care of patients as their priority.

One goal everyone agreed upon was the need for some transparency on the journey to digital health. The following questions encapsulate concerns around a range of issues: What do patients today actually know about how their data is shared and more importantly perhaps, why it is shared?

The lack of transparency in the processes and management behind the U.K.’s recently cancelled Care.data initiative is often cited as one of the main reasons for its failure. One million people reportedly opted out of Care.data, and it was understood that many of these people were discouraged by the prospect of their information being shared for purposes beyond direct care. There was an echo of concern about the prospect of data being sold to third parties. The reality is there was little information offered over how data would be shared, and with whom, which leaves people to draw their own conclusions.

With this in mind, we wonder how many of the people who opted out understood or had access to information telling them where exactly their data would have been shared, or for what purpose. We also don’t know if these people were aware that their data would be anonymised and used in research to help find a cure for a common serious illness, and if knowing this would have made a difference to their decision.

During our discussion in London, it was evident that prioritising transparency could make a significant difference by improving the chances of gaining access to more anonymised data to both ensure public safety, and to enhance public benefit through research, and also by giving patients more control.

Solutions mentioned included enabling patients to access information about who has viewed their medical records, and even granting the ability to give or withdraw consent on a case by case basis. More could be done to communicate public need and the positive effects that anonymised data can bring (e.g. communicating that this data has led to the development of a new drug to treat a particular disease).

There are plenty of stories relating to data breaches in the healthcare sector. It’s interesting to think if it would make a difference if patients were able to read more success stories about data sharing, or if patients were told they could view exactly which practice or practitioner had seen their data – and if this visibility and control would instill more confidence in the prospect of data sharing. The question over whether patients would pay attention, if granted more transparency, was brought  up by the participants at our roundtable session. Privacy of data and security are key concerns that patients cite when it came to data sharing initiatives, but even if you’ve quelled these fears, people ultimately want to know how they will personally benefit from tracking its use and granting consent. Many of us will readily hand over our sensitive financial data for the convenience of mobile banking, because it makes our lives easier.If the public knew that sharing their data could positively influence someone’s health and significantly impact the lives of others, this could add another dimension to the way people think about healthcare data. Overall, being open about the reasons why data sharing is a benefit seems to be the key to real positive change in the sector.  

The solution to achieving this will require co-operation across all aspects of the sector, driven by a real will to understand the issues, the objectives being achieved and where accountabilities should lie. Following the discussion at our roundtable event, and the enthusiasm of all participants for this culture of transparency, we’re encouraged that the commitment for this development is there, which is a positive first step.
— By Faisal Malik, head of Business Development, EMEA (ISC)²