The US now requires healthcare providers to give patients access to all the information in electronic health records without charge.
The recent regulation change makes it the latest in a growing line of countries to give patients full online access, as the benefits of empowering individuals with their own data to hold and reuse as needed continue to gather pace.
Estonia, for example, an early digital pioneer, has had online medical access since 2005, and in 2017, in collaboration with digi.me, Iceland released the world’s first national citizen-facing API. Digi.me also enables users in the UK to access National Health Service (NHS) data held by GPs, while the Netherlands is also notable for having established a governance, commercial and technical framework for enabling API-based record access and a patient owned and controlled record.
As one of the biggest countries in the world, we continue to hope that where the US leads, more follow. This is especially important where there is a current lack of ambition, such as in Europe, where the European Commission recently only promised full access to e-medical records for all citizens by 2030. We can, and should, do better. Not least because existing research shows enormous benefits to individuals and health systems alike.
The US, where digi.me is also very active in health records access, has done a lot of pioneering work in this area, initially with online portals and downloads and more recently APIs. The new move also follows the US Open Notes programme, one of the most notable examples of projects and studies which have explored patient record access at scale and over the years produced a mountain of evidence which shows that patients having access to their own medical records brings myriad benefits, including healthier living and reduced healthcare spending.
Equipping individuals with electronic access and the means to own and control their data provides them not only with the opportunity to feel in control of their health data and able to access it whenever needed, but opens up the possibility of accelerating research and innovation. Importantly, it also overcomes the limitations of the organisation-centric approach to current record storage and access.
Data protection regulations across the world, such as the GDPR, have enabled individuals to have greater rights over their data in recent years.
Companies such as digi.me are working to harness these principles for good, to securely and privately equip individuals with data from across their lives, and then provide them with the opportunity to not just share that data but reuse it as they choose in return for personalised products and services.
While many authorities and organisations are taking steps to improve their relationships with consumers and their data, few have gone as far as the US and its regulations to require timely access,
Importantly, these specify that access must be enabled through programmatic means which enables consumers to not only have a copy of their data but engage with it using apps and services gaining further insight and value. This is an important innovation, and one we also hope many other countries will follow.
The immense gains available for both individuals and healthcare systems will only increase as more countries and medical systems take this patient centricity on board and run with it.
Digi.me is able to provide a secure and reliable means to give data back to individuals as well as request data from them using explicit and informed consent which addresses today’s data protection challenges.
To find out more about both this opportunity and digi.me’s technology, get in touch today.