Data Privacy Health

Epic’s health data sharing opposition doesn’t put patients first

New legislation designed to open up health records in the US and allow patients more control over their data has come under fire from one of the country’s largest medical records companies.

Judy Faulkner, CEO of Epic, has written to some of the US’s biggest hospitals urging them to oppose the regulations, which aim to make it easy for patients to access their health data for free, as well as stipulating that electronic health records (EHRs) should operate seamlessly with third-party apps and services.

Faulkner has long been vocal about her concerns in this area, suggesting that the law could allow app makers access to unconsented data.

But we strongly believe that opposing regulation is not the right solution here. When deaths and injuries started rising as cars became faster and faster, were cars ordered to slow down? No, the seatbelt was invented to make them safer while allowing technological innovation to continue.

The same principle is true in this case – we know there is rising demand for patient centricity, where individuals are in control of their own health and health data, which also has knock-on benefits for healthcare services and budgets.

So opposing regulation is not the answer – we need to look to technology, such as digi.me’s Private Sharing ™ platform, to provide a seatbelt for the internet, allowing individuals to own and control their data as safely as possible, catalysing research and innovation, rather than stifle it.

Building the future of health

The need to safely aggregate and share data from across our lives is absolutely key to the future of health especially as we move into a world where prevention is the key to staying healthy and data underpins all precision and personalised medicine.

Healthcare has often struggled with the idea of making data routinely available to individuals and the various interests within the health eco-system have led to conflicting priorities and issues such as regulation capture. However, there is clear evidence of the benefits for empowering individuals, for example from the Open Notes study in the US.

There is legitimate concern from some quarters, of course, around the sharing of this most sensitive of data, especially in the wake of Facebook’s Cambridge Analytica scandal, where users unwittingly shared their data for purposes they did not fully understand.

Locking down data, though, does not solve this, it merely hampers innovation and the development of patient-centric care, as well as patient safety issues which can even lead to avoidable harm.

The key, and way forward, is to empower individuals with their data and enable them to make informed, transparent and fully consented choices.

Digi.me‘s unique Private Sharing platform, for example, does just this and has been approved by a number of health authorities including the UK’s NHS. Users are able to download or sync a copy of their record, safely store it in a secure location of their choice, and then transparently share it with third parties with explicit and informed consent at every step.

DM-consent-certificate
Digi.me’s consent certificate

Digi.me supports a range a of systems and standards including HL7 FHIR and is already integrated with the likes of EPIC and Cerner as well as proprietary health APIs such as those used in Iceland and the UK, connecting to hundreds of hospitals and general practices. Digi.me is working with a number of partners and organisations who want to have more transparent and ethical relationships with their customers.

Putting patients in control of their data also overcomes the potential for vested interests, who have their own reasons for not wanting data to be more open, whether that be system vendors, organisations or others, as well as putting a halt to issues such as regulatory capture being used to obstruct the ability or rights of patients.

A strong, regulatory framework which reinforces the rights of individuals and empowers them, while at the same time adopting technology which enables this is critical, and for that reason we urge those in the US to turn their eyes towards making data-sharing safe instead of trying to shut it down altogether.

  • If you want to know more about integrating with digi.me, and how to accelerate access to all the data sources we offer including social media, banking, entertainment and wearables, please get in touch here.

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