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What I’d Like to See in 2015: More Data in the Hands of Individuals

We all have busy lives, so it’s only natural that most of us rarely think about our health or health data until we need to—in other words, until there’s a problem. However, for family caregivers, tracking, monitoring and dealing with health data is a constant part of their day-to-day lives. Unfortunately, our health care system is not yet designed to provide efficient support for caregivers, enabled by the kind of technology we’ve come to expect in other areas of our lives.

Today, a mom who is trying to collect her kids’ medical records to check vaccinations for school may have to call one or more pediatricians, wait for faxes or pick up a paper copy if she doesn’t have a fax machine at home (who does? It’s 2015!). Then, she likely has to scan them herself if she wants an electronic copy—which she’ll probably have to keep this file as a PDF. There’s a better way! We can leverage technology so that this mom, or parents like her, can feed their families’ health data into the plethora of innovative mobile apps and online tools currently available to make the data actionable.

Another common scenario: an adult with an aging parent gets a dreadful call that their parent has fallen or is severely ill. He immediately has to spring into action, first to locate and then consolidate his parent’s records from any number of specialists or hospitals to get a complete picture of his parent’s medication list and health history. More than 65 million Americans act as caregivers, providing care to their chronically ill, disabled, or elderly loved ones—and many are faced with unnecessary stress and frustration of collecting and understanding multiple health records. Better health technology can make a difference.

The number one thing I’d like to see happen in 2015 in health care is more individuals getting access to their own health data, enabled by innovative startups that transform the numbers and medical jargon into dynamic graphics and interfaces, so that users can gain meaning from their data and ultimately make better decisions about their health care and the care of their loved ones. Getting individuals fast and easy access to their health information, when and where it matters most to them, and being able to seamlessly share this data across providers is a huge step toward building a stronger, interoperable health care system for all Americans.

We’ve made a ton of progress over the last decade with respect to the adoption of electronic health records by health care providers and making more individual health information accessible in a digital format. Thanks to the Centers for Medicare and Medicaid’s EHR Incentive Program (“meaningful use”), nearly 6 in 10 hospitals have an electronic health record system. Through the Blue Button Initiative, we have galvanized a community of more than 500 public and private organizations, each committed to educating the public on the benefits of individual access to and use of their own health information. The HIPAA Privacy Rule makes it clear that individuals have the legal right to receive a copy of their medical records, and recent regulatory changes allow people to directly receive their lab results from the laboratories themselves, without having to go through their doctor first.

This is an exciting time for health IT startups, with more and more large data holders like Walgreens, Kaiser, New York’s health information exchange SHIN-NY and many more offering open APIs and actively working with the developer community to share data. However, we still face very real challenges around interoperability among health IT systems and products—challenges that more often prevent the flow of information between different providers and ultimately to the individual.

In the meantime, what can startups do to help encourage the liberation of our health data?

  • Make your voice heard. I know this is a tough sell given everything else startup founders have to do, but there are major policy decisions being made all the time that affect the health IT industry, and the entrepreneur’s perspective is rarely heard. I realize that startups don’t have large teams of lobbyists and government relations staff to monitor the latest regulatory changes, but participation can be as simple as submitting comments at Regulations.gov. At the Office of the National Coordinator for Health IT (ONC), we’re working to make it easier for you to follow our regulatory actions. Visit www.HealthIT.gov or follow us on Twitter at @ONC_HealthIT to get the latest news on public policy around the use of electronic health records and achieving secure, nationwide interoperability in support of better health for all Americans.
  • Take advantage of opportunities to test your products in real health care settings. One such opportunity is ONC’s Market R&D Pilot Challenge, which will provide funding for six innovator teams to pilot their health IT solutions in real-world settings, with partners including major hospital systems, pharmacies, laboratories, or community clinics. By participating in this challenge, startups can gain experience implementing their products for use by individuals and providers, learn what aspects need improvement, and contribute to the evidence base for digital health and health IT.
  • Test standards that will make data sharing consistent. In partnership with the private sector through ONC’s Standards & Interoperability Framework, we’ve developed standards to help facilitate data sharing between vendors and third party applications – but we need your help to get these standards in use. In our Blue Button Toolkit, you’ll find technical standards, guidelines, and approaches for sharing electronic health information with consumers in a structured way. Apps that use Blue Button standards are featured on ONC’s Blue Button Connector site.
  • Design health IT solutions in partnership with your users. Technology should fit seamlessly into consumers’ and providers’ current workflows – not create an additional burden or yet another portal for them to sign in to. More than half of America’s doctors now use an electronic health record system, so provider-facing solutions that can integrate with these existing systems will be the most successful; the same is true for products that help providers achieve the View/Download/Transmit requirements of meaningful use. Working closely with patient and consumer advocates and the provider community, and understanding the impact of health IT on their day-to-day lives, will help ensure that your product is meeting people where they are.
  • Join the movement for increasing individual access to health data. With the emergence of so many new innovations in wearables and mobile monitoring, startups have a huge role to play in increasing consumer awareness that more digital health data is available than ever before, and that there are incredible benefits to having access to that information. If you’re interested in working with us to help spread this important message, join the Blue Button movement.

The challenges we face with health information exchange and interoperability won’t be solved without broad engagement from a variety of different types of organizations, companies, and individuals. We need participation by the innovators – startups, developers, incubators, and venture capital – to create real change in this industry, deliver more value to individuals and health care clinicians and providers, and ultimately create a stronger health care system in 2015 and beyond.