Patient centricity is the philosophy of empowering individuals with their data to enable them to use it with the applications and services they choose, acting as a catalyst for record sharing, innovation and research.
In 2017, digi.me collaborated with the Icelandic Directorate of Health to achieve a world first, a national citizen-facing API for medical records. Since then digi.me has gone on to connect to various systems and standards worldwide, and now connects to over 250 (and growing) healthcare providers in the US.
More recently, at the start of the year, digi.me announced it had been approved for access to UK NHS data, bringing Patient Centricity a significant step closer to users in the UK.
This new capability means that, for the first time, UK citizens are able to aggregate their social media, financial, wearables, media and now NHS GP records into a secure personal library which they own.
Our first UK focus group gathered together a small group of people in London to explore their attitudes towards accessing their data and being able to use it with 3rd party applications and services, looking at the challenges and opportunities ahead as well as being the first users to test the digi.me Private Sharing™ app with NHS records.
One of the key topics of conversation was the assumption that having a National Health Service meant patient records are available all across the country when in reality this is often not the case. One of the key benefits discussed was the ability for individuals to take greater control of their own data, and be able to share their own up-to-date and accurate information at the point of care.
A number of participants had lived outside the UK and received care across borders. It was suggested that in countries such as Germany and France, there is greater inclusion of patients in correspondence and their records. With individuals being increasingly mobile and crossing various geographic boundaries due to family life, work and holidays, this is an important lesson for the UK.
Uniquely, digi.me enables individuals to take a copy of their data and hold it in a location they choose so they can carry it with them and share it. This fundamentally changes the model from one of centralised data held by organisations to one of “data mobility”, where the individual has great agency.
This is a fundamental paradigm shift that is simple in concept but gives rise to a number of challenges when thinking about how this works in practice, in particular with regards to security. One of digi.me’s key focuses is looking at how to simplify the user experience and articulating the sophisticated – and highly secure – Private Sharing technology to broad groups of people with differing technical abilities.
There are also practical issues for individuals understanding their rights and navigating the different healthcare systems and processes and then being able to access or use them.
It is anticipated that as the personal data eco-system matures, many of the challenges around education and awareness will start to be addressed and so the key concepts and ideas will become more generally understood, as has happened in other areas such as online commerce and banking.
Once individuals have their data they are able to share it for the purposes they choose. A number of interesting comments and insights came out of the sharing conversation:
- “The data is not the issue. It is who you share it with and for what [reason].”
- “Sharing by default is not acceptable. Difficult enough in health to determine who is asking for your data and how. My data is possibly everywhere, whilst I did not actually understand what/why a party needed access to it.”
- “When sharing, I also want to have something back. Maybe research from NHS is ok, but I share and never see how it helped NHS do the research, let alone receive any findings.”
Knowing when it is safe to share your data and with who is a key dimension of the Patient Centric model. A key role of digi.me is to provide greater transparency to make it clear about what data is being shared, with who and for what purpose.
Alongside this, there is a need for apps and services to be validated so that individuals can understand the quality and trustworthiness of the apps they engage with. Organisations such as Orcha currently work with the NHS to validate apps to provide further transparency about the quality of these apps and services.
While it is important to ensure equity of access by offering choice, it is clear that personal data and privacy is rising up the agenda and just like the evolution of the internet, email and online banking, it is anticipated we will see a shift in the area of personal data.
As part of this shift, digi.me is committed to working with the health community including patients, healthcare and industry to enable this new patient-centric world.
The initial rollout phase provides around 50 per cent of patients in England with access to key aspects of their GP record using the digi.me Private Sharing ™ app, and as part of this rollout we will be gathering feedback from UK citizens.
Future activities will dive in to the issues in more depth to look at particular patient groups as well as specific data sharing scenarios including areas such as medications management, condition specific pathways such as diabetes as well as secondary uses such as research.
The aim is to establish a UK health patient centricity community of best practice, exploring further the opportunities as well as establishing real world proof of concepts and pilots.