Your health data: Sharing and protecting it for good

Let’s say you become suddenly ill and need emergency care.

Will doctors know what health conditions you have and what medicines you’re allergic to — even if you’re not conscious or coherent enough to tell them? If they can access your medical data to find out, how can you trust it won’t be used by someone for purposes you don’t authorise?

This conundrum illustrates the benefits and drawbacks of electronic health data access that have medical professionals and patients both encouraged and concerned.

Medical personnel are limited by having to rely on patients to accurately report their medical histories in urgent situations. With the advent of digital health records and data connectivity, shouldn’t your complete medical history be able to be accessed quickly no matter where you are in the world?

Surprisingly, the answer in many places is still no. Even in developed countries where Internet access and technology use is widespread, privacy laws, cultural traditions and insufficient data are barriers to progress.

When seconds matter

Tracie Storie knows that first-hand. When the U.S. resident was away from home and admitted to intensive care for a worsening kidney infection, she couldn’t tell hospital personnel about her antibiotics allergies. And no one could check her records because her primary care physician’s office was closed. The doctors had to immediately treat her serious E. coli infection despite the huge risk posed by not knowing which antibiotics she was allergic to.¹

Things would have been different if she had been Estonian.

A model system

Thanks to an e-health system Estonia put into place in 2008, the Baltic nation is at the forefront of digital medicine. Had Tracie lived there, emergency room doctors could have scanned her national ID card to immediately access her complete health record, including care summaries, referrals, vaccinations and drug allergies. They could have started treatment without waiting for her doctor’s office to open. And they could have ordered tests or treatments that would automatically be added her health record.

At her follow-up visit with her primary care doctor, all emergency treatment details would already be online. She would be able to see who had accessed her data and decide what could be shared with others. If she was prescribed medicine, she or someone she authorised could pick it up at any pharmacy without needing a paper prescription slip.

The power of digitalisation

When used effectively, data has the power to transform health care by getting you the right care at the right time for the right cost. In the Estonian model, about 95 percent of its citizens’ health data is digitised. Nearly all prescriptions are online, and all health care bills are transmitted electronically. Doctors see patients in person but can also use Skype to consult with them and renew prescriptions.

And Estonia’s health information system is fully integrated with its many other online services — from e-voting to driver’s license renewals to online business registrations. The country is also working on linking existing DNA data with records from social service organisations. All of these systems working together mean a more convenient, accurate, cost-effective health care experience.

The health data revolution

Convenience aside, some of the most promising uses of data are to actually improve your health. Doctors need to keep up with research, technological advances and new drugs to do their jobs well. But they simply don’t have time to read all relevant studies published in medical journals. And more data has been created in the past two years than in all previous years combined — way more than humans alone can parse and analyse without the help of artificial intelligence.²

With the right data analysis tools, doctors and hospitals could revolutionise the care they provide. ‘Big data’ can also help identify important trends on a whole population level to predict and plan for disease outbreaks. And your health care costs and spending could go down if long-term data such as complete medical histories were kept and shared.³

Health care as consumer ‘service’

A recent survey showed that many people are now expecting more personalised medicine, cost transparency and conveniences than many health systems provide.⁴ They are also increasingly willing to collect and share data about themselves through Fitbit fitness trackers and similar biometric devices.

Unfortunately, most of that data never makes it to doctors’ offices — even though it has potential to help their patients. For example, Fitbit’s Ionic smartwatch includes a blood-oxygen sensor that could potentially detect sleep apnoea and heart arrhythmia. Pending approval by the U.S. Food and Drug Administration, the device could replace expensive, uncomfortable chest patches for some patients.

The importance of data security

Much can be learned from the huge wealth of data stored in databases, medical journals and wearable devices. Harnessing that data could go a long way toward preventing and treating the diseases that plague humanity today. But how can it be collated and shared without compromising patient privacy?

One of the reasons the Estonian approach to health data has worked well to date is its high level of public trust in safeguarding private information.⁵ Its citizens can see who has accessed their data in the past and control future access. They have digital ID cards that use two-factor authentication, with the system maintaining a log of all activity and not allowing records to be changed — only added to. And all data is encrypted and sent through secure channels.

The European Union’s recently enacted General Data Protection Regulation mandates that all living individuals’ data — including their names, addresses, email addresses, identification card numbers and health and genetic data — be rigorously protected.⁶ When someone is collecting their data, people must be informed of that and be told who else might receive the information and how long it will be kept. They have the right to receive a copy of their data and to withdraw consent at any time.⁷

Blockchain technology and your health data

To many experts, the holy grail of data security is blockchain technology — a way to store data in a secure, distributed fashion. Using this technology, electronic health records could be spread across a network of databases that sync with each other. Users could only update the ‘block’ they’re allowed to access, but then those updates would be replicated across the entire network with date and time stamps for every change.⁸

Considering the health data breaches that have been reported in recent years, blockchain technology is an important way to enhance data security. It could also help save lives and reduce costs by reducing the inefficiencies of ‘siloed’ systems.

Catering to you

These types of digital capabilities are especially important for the expatriates and global mobile individuals we serve at Aetna International. Our focus is increasingly turning toward providing our members with access to high-quality, on-demand services — including virtual care that’s available anytime, no matter where they go. Our goals are to help healthy people stay healthy, catch medical problems early and manage chronic conditions and illnesses better. By innovating on the data technology end of health care, we’re making progress on those goals so that our members can all achieve their own health goals.

Find out more about Aetna International’s approach to interoperable health systems and the impact big data could have on the delivery of quality care around the world. At Aetna International, it’s our mission to help reshape health care across the globe by developing solutions to improve the quality, affordability and accessibility of care. Read our white paper — Personalised and protected: Health and wellness for the globally mobile — or contact Aetna International today to learn more.

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