ONC Takes on Patient Engagement in HIT

The federal government will spend nearly $1.4 million to determine "whether and when" providers can share patients' data and to figure out how best to share electronic health data between patients and providers.

In a 36-page document, the Office of the National Coordinators' Office of the Chief Privacy Officer outlines a number of questions and tasks for the contractor, APP Design, Inc., with partnering with providers to creating pilot programs to answering a number of questions about how to engage patients and educate them about their electronic health data.

"The project team will design, develop, and pilot innovative ways to electronically implement existing patient choice policies, while improving business processes for healthcare providers," according to a statement from ONC's Office of the Chief Privacy Officer. The contractor is also charged with looking for an "efficient, effective, and innovative way to help patients better understand their choices regarding whether and when their healthcare provider can share their health information electronically, including sharing it with a health information exchange organization."

The project seeks to:

• Establish policies and procedures to guide the consent process
• Educate patients about data exchange
• Educate providers about their responsibilities with respect to consent management
• Develop methods and materials to support the education process
• Develop methods and materials to obtain actual consent

Hospitals, health systems, and physician practices are working toward achieving meaningful use by investing in electronic health records and other health information technologies. But one of the "five pillars" of meaningful is to engage patients and their families in electronic health data.

The Stage One requirements of the HITECH Act, already in place, include the relatively simple tasks of sharing discharge instructions and providing patient education. But in future stages providers will be asked to do more -- such as communicating with patients electronically to help them manage chronic conditions and to intervene before they require emergency care.

Last week, Farzad Mostashari, MD, ONC's national coordinator for health information technology conceded that the office has not paid enough attention to patients in developing HIT policies and programs.

The work order is the latest in a series of moves to change that -- and to help providers meet this challenging aspect of meaningful use regulations. ONC has launched a website, healthit.gov, with information about health IT for consumers and healthcare professionals. It also launched a Consumer Health IT Pledge initiative for organizations that participate commit to making it easier for patients to access their personal health data and to educate patients as to why it is important to do so.

The federal government is also putting resources into the Blue Button Initiative, a platform that designed to make it easier for patients to download their medical records.

But there are still a number of challenges, ONC notes, including concerns about privacy and accuracy of the data.

One of the key goals of the Federal Health Information Technology Strategic Plan, published last month, is to inspire consumer trust and confidence in health information technology and electronic health information exchange "by protecting the confidentiality and integrity of health information through appropriate and enforceable federal policies," according to the e-consent work order. "Informed patient choice is one way to ensure a trust relationship with patients for the success of electronic health information exchange."

The "e-consent trial" sets out to answer a number of questions about data-sharing. Among them:

• What background information do patients desire and need when making decisions regarding electronically sharing their health information?
• Do patients understand the choices they make? How can we determine the level of their understanding?
• Are there means of electronically facilitating, obtaining, and recording consent to assist health care providers who are engaged in this process?

There is little research as to whether patients are adequately informed to understand the choices they make with respect to sharing health information, ONC says, while studies show that efforts to collect informed consent for treatment from patients are often inadequate and have little educational value.

"The ability to obtain meaningful consent to share health information presents similar challenges," the document notes.

In addition, too many organizations are still using paper-based consent forms. And even those organizations cited as being ahead of the e-consent curve aren't doing enough, ONC says.

"The efforts by the VA to adopt an electronic consent system are frequently cited, and evaluation to date indicates the value of developing such a system. However, the VA’s system and many other systems in use today are primarily being applied with respect to consent for health procedures or treatment and not for electronic health information exchange. It will be important to address the unique challenges of collecting and tracking patient choice regarding sharing their health information in an electronic environment, where information exchanged between health care providers must indicate a patient’s meaningful, informed choice and enable the patient choice to be honored."