Coalition urges ONC to include patient-facing measures, not just provider ones, in MACRA standards

By Jonah Comstock
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Friday was the last day to submit comments to the ONC about how the entity ought to measure interoperability under MACRA. While a number of organizations submitted their thoughts, one letter stood out. The Consumer Partnership for eHealth (CPeH), a non-partisan coalition led by the National Partnership for Women and Families, argued that interoperability and information exchange won't truly be complete until they include the patient and their family caregivers.

"We support the goal of achieving widespread electronic exchange of health information as a prerequisite for reimbursing value-based care and improving health outcomes," the group wrote in a letter to National Coordinator Karen DeSalvo. "However, just looking at interoperability among certified electronic health record (EHR) systems and meaningful EHR users does not capture the spectrum of core populations and uses under MACRA. Patient and family caregivers, too, are key exchange partners when receiving, using and contributing new information that helps provide a complete picture of their health. There is also great need to measure information exchange and use throughout the health care spectrum, particularly with long-term care facilities and community-based organizations, to understand how information exchange is and is not occurring across the care continuum."

In the letter, CPeH notes that patient engagement is already a part of ONC's Interoperability RoadmapThey argue against segmenting patient access to records and provider access to records, or prioritizing one over the other.

"Individuals cannot possibly be active partners in care, effectively achieve health goals and treatment plans, or make informed decisions without accessible, electronic information about their health and health care, and a corresponding ability to share such information," the letter goes on to say. "For instance, equipped with online access, individuals can download and share their health information with other doctors and trusted caregivers in case of emergency or when seeking second opinions. Providers in turn cannot succeed under new models of care without activated and engaged patients."

The letter outlines some concrete steps ONC can take to better incorporate patients and family caregivers into the outcome measures in MACRA. It suggests a measure of whether data is accessible by long-term care facility or nursing home staff. It also suggests incorporating into its interoperability standards several initiatives ONC is already incentivizing through other programs, including view, download, and transmit; secure messaging; patient-generated health data; Health Information National Trends Survey data; and third-party applications connected to open APIs. They also encourage ONC to implement the final stage of Meaningful Use as planned.

Finally, CPeH cautions ONC to remember that patients are a diverse group, and that it's important to make sure all patients benefit from initiatives meant to engage and empower them.

"Just as there are health disparities, there are interoperability disparities," the letter says. "We urge ONC to measure disparities in interoperability by stratifying metrics of individuals’ exchange and use of information by demographic variables, including race and ethnicity, gender, sexual orientation and gender identity, language and disability. Doing so would allow ONC to determine whether there are gaps in information exchange among populations, and ultimately ensure equal interoperability and information exchange and use across patient populations."

The letter is signed by the members of CPeH, including AARP, the American Association on Health and Disability, the American Cancer Society Cancer Action Network, the Asian & Pacific Islander American Health Forum, the California Pan-Ethnic Health Network, the Center for Medical Consumers, the Consumers' Checkbook/Center for the Study of Services, the Consumers Union, the Disability Rights Education and Defense Fund, Family Caregiver Advocacy, Healthwise, the Informed Medical Decisions Foundation, the National Partnership for Women and Families, and the Children’s Partnership.