In comments filed today, the nation’s top consumer advocates praised the Office of the National Coordinator’s (ONC’s) draft Shared Nationwide Interoperability Roadmap for advancing full and equal interoperability, not just among health care providers but also between providers and patients and their family caregivers. The Consumer Partnership for eHealth (CPeH), a group of more than 50 leading consumer, patient and labor organizations, filed the comments today in advance of the April 3 deadline.

ONC’s draft Roadmap, they wrote, will help the nation enable and support a learning health system in which all individuals, their families and care providers can send, receive, find and use electronic health information in ways that are appropriate, secure, timely and reliable for continuous learning and improved health. This will have a profound impact in transforming our health care system into one that better meets the needs of patients and families. They also praised the draft Roadmap for treating patients and families as equal partners in the continuum of care and in electronic access to and use of health information, noting that “better care, better health and lower costs absolutely depend upon patients being equal and engaged partners.”

“The draft Roadmap is a significant step forward for our health care system and our country. It can help make health information technology the engine of successful reform that it can and should be,” said National Partnership for Women & Families President Debra L. Ness. “We can only make the progress we need if our health care system is patient- and family-centered, and patients and families become genuine co-creators of their own health and health care. If implemented, this draft Roadmap can help make that possible.” The National Partnership leads CPeH, which has a combined membership of more than 127 million Americans.

Under the current fragmented fee-for-service payment model, there are few incentives to share data. Interoperability is a key component of broader efforts to move toward a value-based health care system, and health information exchange is fundamental to achieving the improved quality, care coordination, patient-centeredness and cost reduction goals that drive many new models of care delivery and payment. For example, the draft Roadmap sets out actions for the nation whereby both individuals and providers along the care continuum would be able to send, find, receive and use essential health information in 2015-2017, the first three years of its ten-year agenda.

In the comments, CPeH also:

• Applauds ONC’s emphasis on partnerships between individuals and health care providers in the pursuit of better health. For example, the widespread and inclusive view of patients as sources of valuable clinical information conveyed in the draft Roadmap helps to empower individuals to be active partners in their health and health care and is critical to realizing meaningful partnerships between providers and patients.
• Recommends that ONC shift its focus from individuals demanding access to their electronic health information to ensuring that individuals and caregivers actively use this information. Providing electronic access to health information is fundamental to individuals’ ability to cultivate meaningful, active partnerships with their providers.
• Urges significant progress in making health information available in non-English languages in order to provide electronic information in a format all individuals can use, including the 60 million Americans who speak languages other than English at home. For example, a Spanish speaker who receives her hospital discharge instructions electronically, but in English only, may not be able to use that information – a crucial component of true interoperability.
• Requires consumer involvement in any coordinated governance process regarding interoperability. Including patients, family members and consumer advocates on governing bodies will ensure that their unique perspectives on how to advance interoperability are considered as policies and procedures are developed.

“The publication of this Interoperability Roadmap, along with the goals and timetable for payment reform announced in January, the launch of the Health Care Transformation Task Force and the launch of the Health Care Payment Learning and Action Network, has made this an important moment in the work to make our health care system more patient- and family-centered,” said Mark Savage, the National Partnership’s Director of Health Information Technology Policy and Programs. “We urge ONC to adopt CPeH’s recommendations and to strengthen the Shared Nationwide Interoperability Roadmap even further.”

The CPeH comments were endorsed by the Alliance for a Just Society; American Association on Health & Disability; American Cancer Society Cancer Action Network; Association of Asian Pacific Community Health Organizations; Boston Public Health Commission; California Pan-Ethnic Health Network; Caring From A Distance; Connecticut Health Policy Project; Consumers Union; Disability Rights Education and Defense Fund; Family Caregiver Advocacy; Genetic Alliance; Healthwise; Maryland Women’s Coalition for Health Care Reform; Morehouse School of Medicine; National Consumers League; National Family Planning & Reproductive Health Association; National Health Law Program; National Partnership for Women & Families; The Children’s Partnership; Universal Health Care Action Network Ohio; and Mary Anne Sterling, Family Caregiver Advocate.