At the recent Health 2.0 Conference in Santa Clara, co-chair Matt Holt expressed frustration about the difficulty of getting copies of his young daughter’s medical records. His experience catalyzed a heated discussion about individuals’ electronic access to their own health information. Many people are confused about or unaware of their legal rights, the policies that support those rights, and the potential implications of digital access to health data by individuals. The Health 2.0 conference crowd included 2000 entrepreneurs, consumer technology companies, patient advocates, and other potentially “disruptive” forces in healthcare, in addition to more traditional health system players.
Why is this topic so important? Until now, most people haven’t accessed their own health records, whether electronically or in paper, and I believe that making it easier to do so will help tip the scales toward more meaningful consumer/patient engagement in healthcare and in health. Access by individuals and their families to their own health records can empower them to coordinate care among multiple healthcare providers, find and address dangerous factual errors, and take advantage of a growing ecosystem of apps and tools for improving health-related behaviors, saving money on health services, and getting more convenient, personalized care.
A shorthand phrase for this kind of personal empowerment through access to digital health data is “Blue Button,” which is also the name of a public-private initiative in which hundreds of leading healthcare organizations across the US participate. The Blue Button Initiative is bolstered by the electronic access to health information requirements for patients in the “Meaningful Use” EHR Incentive Program, which is administered by CMS (the Centers for Medicare & Medicaid Services) with companion standards and certification requirements set by ONC (the Office of the National Coordinator for Health Information Technology).
The Good News
HIPAA Guarantees Individuals’ Rights to Get Their Health Records. The Health Insurance Portability and Accountability Act of 1996 (HIPAA) is the bedrock of patient access rights, providing individuals a legal right to access their own health data held by providers, hospitals and other healthcare players, and to get it in electronic format if available (which, increasingly, it is). HIPAA also requires that a provider send a copy of records to a designated third party at an individual’s request (although this requirement doesn’t specify that it be electronic).
Stage 2 Meaningful Use Certified EHRs Must Have the Technical Capability to Let Individuals Get their Health Data. The certification rules associated with Stage 2 of the Meaningful Use program require that electronic health records have the capability to enable patients/consumers to view, download, AND transmit their own health information. Further, at least 50% of patients in a particular practice or hospital must have access to all three of these functions in a particular reporting period.
Woah, Wait a Second! Look at the two points above. Together they provide what we’re looking for–individuals’ ability to get their own health records electronically. So what’s the problem?
The Not-So-Good News
Meaningful Use has its Limitations when it Comes to Patient Access. Some folks at Health 2.0 were upset to learn that providers who apply for Meaningful Use incentive payments, and are thus required to report how they are actually using their certified EHRs, aren’t required to show that their patients view, download, AND transmit their own health information. The provider’s EHRs must have the capability to let patients do all three, but when it comes to use, only 5% of a provider or hospital’s patient population needs to actually view, download OR (not AND) transmit their health data within a given time period.
Implementation Is Harder and More Time Consuming than Hoped. In response to technical challenges faced by providers and hospitals in implementing the requirements for Stage 2, the government has recently provided flexibility regarding timelines for the Meaningful Use program. Among the implementation challenges is confusion regarding details of the patient access requirements, many of which are addressed in this ONC blog post
The Bigger Picture & What You Can Do
If you feel frustration about the “not-so-good news,” I hear you. But, having recently worked at ONC myself, in my opinion the fact that Meaningful Use includes any patient engagement/access requirements is a big win. And the truth is, the essence of what’s needed from a legal perspective is provided by HIPAA. Want to further support individual access to health information and engagement? Here are some steps you can take today:
Listen In & Speak Up. Many members of the Health 2.0 community are underrepresented in Washington DC. You don’t have to set up expensive lobbying and federal affairs offices, but you should dedicate some resources to keeping track of what’s going on in Congress and a few key agencies. Keep your eyes peeled for a new resource that may be coming out of ONC to support you (wink wink, nudge nudge). And remember that Meaningful Use is just one part of a bigger picture. In my opinion emerging payment models associated with the Affordable Care Act (ACA) are the key to getting health data flowing digitally, both directly to individuals and among providers.
Walk the Talk: Share & Use Health Data via the Blue Button Initiative. You don’t need a federal mandate or incentive program to share health data electronically with individuals. The Blue Button Initiative is a voluntary public private effort through which diverse organizations that collect and hold health-related data are making it available digitally to consumers, whether they “have to” via Meaningful Use or HIPAA or not. If you are sharing personal data with the public, make sure you’re listed on the Blue Button Connector . If you’re building apps and tools, integrate Blue Button data others are sharing via APIs and make sure your app is listed on the Connector site. Need help using the Blue Button recommended standards and other resources? Use the Blue Button toolkit
Harness the Power of the Public. If a large number of members of the general public started exercising their rights to get their own health information electronically, providers, hospitals, payers, labs and others would be under much greater pressure to provide it. But most people have no idea about their legal rights or an appreciation of why they’d want to access their health records. ONC and its partners in the private sector are trying to change that through a national outreach campaign via the Blue Button Initiative. If this matters to you, please join them! Another way to tip the scales is to build consumer health tools and services so compelling that people start clamoring to get their own data so they can make the most of them.
Lygeia Ricciardi is a consumer engagement and digital health expert. Until recently, she served as the Director of the Office of Consumer eHealth at ONC.