Building Momentum: Expanding Patient Access to Medical Records

Lygeia Ricciardi / Director, Office of Consumer eHealth, ONC
Twitter: @Lygeia

Last month we at ONC and the health IT team at the White House gathered a group of diverse stakeholders to talk about ways to turbo charge patient access to medical records and how they can use their own electronic health information to achieve better health and healthcare. The Patient Access Summit II built on the momentum of a similar gathering last year.

A Roadmap for Increasing Patient Access to Medical Records

At last year’s Patient Access Summit we heard from providers, health plans, electronic health record (EHR) vendors and other “data holders” that they needed a roadmap to show them how to implement electronic access to consumer health data.

We also heard from technology developers that predictable standards for what type of health information is shared, in what format, and how it’s transported is essential to their business case.

Standardized data would enable the development of a richer ecosystem of apps and services, enabling consumers to designate a third party app to receive information from their health record on their behalf and to “set it and forget it” so any updates would automatically flow whenever there was a change, rather than having to manually download new information each time.

Progress in Patient Access to Medical Records Since Last Year’s Summit

The community has made great progress in addressing the needs its members helped articulate and expanding patient access to medical records:

• In February ONC released the Blue Button Plus (BB+) Implementation Guide, developed with input from 68 volunteer members of the “Automate Blue Button Initiative.”  The guide is a technical blueprint for data holders and receivers alike to share information in a standardized format.
• A number of “data holder” and “data receiver” organizations have implemented the Blue Button Plus guidelines and several of them demonstrated their progress at HIMSS. Implementers include:
  • Beth Israel Deaconess Medical Center,
  • the Veterans Administration,
  • Greenway,
  • Humetrix,
  • Microsoft HealthVault,
  • NoMoreClipboard, and
  • Get Real Health.
• The Blue Button Plus guidelines dovetail nicely with Stage 2 Meaningful Use EHR Incentive Program requirements that participating providers enable their patients to view, download and transmit their health information electronically to a third party.

Key Takeaways on Patient Access to Medical Records from this Year’s Summit

So what did we hear at this year’s Patient Access Summit?  Among the most pressing areas participants identified as needing additional work were the following:

1. Developing and rolling out a consumer education and outreach campaign to stimulate consumer demand for their electronic health data, using “Blue Button” as a symbol for a widespread movement supporting patient access to medical records and consumer engagement in their health and health care.
2. Addressing key technical and policy challenges associated with consumers’ ability to access, aggregate, and share their own health records (AKA “consumer-mediated exchange”).
3. Clarifying federal regulations and policies, largely related to privacy, as they impact provider implementation of Blue Button Plus guidelines.
4. Developing clear guidance for providers related to workflows associated with adoption of Blue Button Plus guidelines.
5. Refining and publishing additional Blue Button Plus guidelines that concern how a third party app or tool is designated by consumers to retrieve their health data on a recurring basis (AKA the “pull” model).
6. Establishing and encouraging the adoption of guidelines for payors to share claims data with consumers, including explanation of benefits (EOB) content.

Some of these areas are already being or will be addressed via ONC’s two consumer engagement focused Federal Advisory Committees. Others will be tackled by federal staff with input from outside parties or led by the private sector with some support from federal staff. In all cases, finding and implementing solutions will depend on ongoing public-private sector collaboration.

Why Giving Patients Access to Medical Records Matters

Giving patients (or, more broadly, consumers), easy electronic access to their own health information is a key step in empowering individuals to be more engaged partners in their health and their healthcare, including:

• coordinating care among multiple providers,
• making sure medical records are accurate and complete, and
• using apps and tools to set and meet personal health goals, ranging from managing medications and healthcare finances to being able to play tag with the grandkids.

We live in a digital age in which we go online regularly to check our bank accounts or review our credit report to make sure it’s accurate, yet the vast majority of Americans has never accessed their health records electronically or checked to make sure that information is correct. Further, many don’t feel comfortable asking their health care providers questions, or challenging a prescribed course of treatment.

We envision a time, perhaps not so far away, when healthcare catches up to the rest of the 21st century digital world. Imagine being able to combine:

• data from your own medical records,
• information you collect about yourself through wearable devices or your own observations,
• the latest research findings, specialized knowledge from patient groups, and
• apps and tools that let you bring it all together to make informed decisions and modify your behaviors in positive ways based on your personal preferences and goals.

This vision is compelling in part because it paints a healthcare system that is more personalized, convenient and safer than the one we experience today.  Even more fundamental, though, is that letting you be part of the flow of information invites you to participate in and even direct your own health and healthcare to the extent you choose. And why not? Who cares more about your personal health than you or your loved ones? And who wields the greatest power to keep you healthy and address your health needs as they arise? Again, you—and those family members and friends who care for and about you.

How You Can Engage in Advancing Patient Access to Medical Records

If you would like to participate in any of this work, please share your name, affiliation, contact information, and your area of primary interest through BlueButton@hhs.gov. In addition, if your organization would like to pledge its support for advancing patient access to medical records, I encourage you to take the Blue Button Pledge at www.HealthIT.gov/pledge.

We at ONC look forward to continuing to work with a diverse community of partners as we continue to build the momentum for patient access to medical records—and the deeper engagement in health and healthcare it supports.

Several participants in the Patient Access Summit II have blogged about the meeting. Here are their perspectives:

1. Dr. Len, Dr. Len’s Cancer Blog: They are YOUR Medical Records. Will The Blue Button Help You Get Them?
2. Dave Chase, Forbes: A Blue Button to Solve The Structural Deficit
3. Keith Boone, Healthcare IT News: Patient Access Summit II
4. Zac Jiwa, HITManZac: Patient Engagement – Is Blue Button+ the Silver Bullet

This article was originally published on the ONC’s Health IT Buzz and is re-posted here with permission.