Download Capability Backed As Essential To Meaningful Use

The Markle Foundation has issued a policy paper recommending that the U.S. Department of Health and Human Services (HHS) make the "blue button" -- a way to click and download personal health information from a secure website -- a priority in all health IT efforts.

Released Tuesday, the policy paper is the work of the Markle Work Group on Consumer Engagement, a public-private collaboration operated and financed by the Markle Foundation, a group backed by 46 organizations that examines the role of IT in healthcare. Among the policies, practices, and recommendations set out in the document are the need to make the download capability a common practice and to implement security and privacy tools that will protect access to personal health information.

"By clicking the blue button, you could get your own health information electronically -- things like summaries of doctor visits, medications you are currently taking, or test results. Being able to have your own electronic copies and share them as you need to with your doctors is a first step in truly enabling people to engage in their healthcare," Carol Diamond, managing director at Markle, said in a statement. "This capability is not common today, but we have the opportunity to make it a basic expectation -- especially now that billions of public dollars will be flowing to help subsidize health information technology."

As the current wave of spending by the federal government and the private sector in health IT continues, consideration must be given to supporting an easy, safe, and efficient way for individuals to access their own health information electronically. The policy paper outlines several steps HHS can take to encourage the widespread implementation of the blue button.

One recommendation is to support the download capability in meaningful use and qualified or certified health IT. The report urges HHS to specify it as an option for providers and hospitals to achieve Stage 1 patient-engagement requirements and as an allowable means for providers to deliver electronic copies of records to individual patients.

The report also encourages making the download capability a core procurement requirement for federal- and state-sponsored health IT grants and projects, as well as a priority in health information exchanges (HIEs) and private-sector purchasing initiatives for personal health information services.

Additionally, the policy paper advocates collaboration on sample data sets. The Centers for Medicare & Medicaid Services and the U.S. Department of Veterans Affairs (VA) are leading the way in making publicly available sample data sets for demonstrations. The document calls on other private sector custodians of health information to join the effort by contributing additional sample data sets and joining in problem-solving.

The paper is being released as Medicare and the VA prepare to implement a blue button this fall that will, for the first time, allow beneficiaries to electronically download their claims or medical information in a common format from the My Medicare.gov and My HealtheVet secure websites.

President Obama announced the blue button for veterans in an Aug. 3 address. "For the first time ever, veterans will be able to go to the VA website, click a simple blue button, and download or print your personal health records so you have them when you need them, and can share them with your doctors outside of the VA," he said.

The policy paper also encourages entities that offer the download capability to follow the Markle Common Framework, which is a general set of policies and practices for a wide array of networked personal health information services.

The Markle Common Framework states that personal health record services should provide an easy-to-use mechanism for individuals to export the information in their accounts for personal use. It details that such mechanisms should:

-- Provide information in human-readable form.

-- Log each transaction (e.g., download) in an immutable audit trail.

-- Include time-, date-, and source-stamps for key data entries (i.e., diagnoses) within the downloaded information itself.

-- Include a printer-friendly format.

-- Enable data to be exported into commonly used software formats, such as spreadsheets, PDFs, or text files. Additionally, data should conform to industry standards for health data subsets as they become available and are broadly implemented.

The policy paper also suggests that organizations providing the download capability should:

-- Provide a clear, concise explanation of the download function and its most fundamental implications for the individual.

-- Provide prominent links that enable individuals to view more details about the download process, including what basic security precautions they can take on their own, how the service answers questions (i.e., through direct communication, FAQ page, or other means), and who they should contact if they believe some of the downloaded information is in error.

-- Obtain independent confirmation from the individual that the individual wants to download a copy of personal health information.

-- Present the individual with a conspicuous means to cancel the download at every step up to the final confirmation step.

"People see a lot of different healthcare providers over time, so giving them a convenient option to securely assemble their health information from multiple sources will help them better manage and coordinate their own care," Christine Bechtel, VP of the National Partnership for Women & Families, and a member of the federal Health IT Policy Committee, said in a statement supporting the Markle policy paper. "This capability is one of the simplest and most direct ways of helping patients and families see the benefits of the federal health IT investments that they, as taxpayers, have helped fund."

Among those organizations declaring their support for the policy paper are AARP, Allscripts Healthcare Solutions, the American Academy of Family Physicians, the American College of Cardiology, the American College of Emergency Physicians, and the American Medical Association.