Patient Advocates Want More Say In Health IT

Health IT Boosts Patient Care, Safety

Calling consumers "the most significant untapped resource" in healthcare, a coalition of consumer, labor, and patient advocacy groups has articulated a vision for a technology-enabled, communication-based healthcare system that considers patients both partners and leaders in their own care.

"We are not interested in using technology merely to tweak a dysfunctional system; we want to transform it," reads the Consumer Platform for Health IT from the Consumer Partnership for eHealth, which includes organizations such as AARP, the National Consumers League, the National Health Law Program, and the American Heart Association.

"We believe that consumer, patient, and caregiver engagement is the game-changing element of a comprehensive, effective strategy for reforming our overburdened, overpriced healthcare system, through more effective use of information," said the platform statement. "For consumers, gaining access to the information necessary for our engagement, and the tools to make it useful, are key benefits of health IT. We do not want to be our own doctors, however, so all members of our care teams must also make greater use of information through the meaningful use of health IT."

The plan emphasizes prevention, wellness, and consideration of the whole person, not just the presenting injury or symptom, in context of lifestyle, job, school, family, and community.

"Health IT is a critical enabler of the kind of information sharing that is crucial for continuously improving the health of individuals and populations, as well as the nation. Achieving better care, healthier communities, and more affordability will require the utilization of all our collective resources, and consumers have critical assets to bring to policy-making tables and to individual decision-making processes," the document says.

According to Christine Bechtel, VP of the Washington-based National Partnership for Women & Families, which leads the Consumer Partnership for eHealth, the platform seeks to alleviate the two biggest "pain points" for consumers in healthcare today, namely communication and coordination. It also tries to answer two major questions: "What is the kind of patient-centric health system we want, and what can technology do to enable that?" Bechtel said in an interview. "We're looking for an information-rich healthcare system."

The coalition cited a survey by the California HealthCare Foundation that found that 55% of Americans wished their physicians shared more information with each other. Half said it was difficult to keep track of all their health information.

Electronic health records (EHRs) can help, but Bechtel, a member of the Health IT Policy Committee, an advisory panel to the U.S. Department of Health and Human Services, said the federal EHR incentive program only partially addresses the consumer element so far. Stage 1 requirements for "meaningful use" of EHRs require physicians to deliver electronic clinical summaries for 50% of their patients, but hospitals only have do so for half of those who specifically ask for electronic copies of discharge summaries. Patients today rarely make the request, Bechtel said.

She did say, however, that HHS officials have indicated they will strengthen consumer-related standards in stage 2, which starts in 2013. "Stage 2 meaningful use will go a long way," Bechtel said. But consumers also have to take a more active role in their own care and healthcare providers need to start trusting information provided by patients, the coalition said.

"Just as other members of the care team have information to contribute, consumers also possess unique information necessary for creating a comprehensive picture of their overall health. Even as health IT becomes more widely adopted and personal health information begins to move easily and securely among members of the care team, the quality and accuracy of this information will need to be verified and updated," according to the policy document.

"Consumer input is vital to this process. Consumers can also help to put the facts into context by explaining how they relate to the bigger picture of their daily lives. Consumers need to be active partners in their care, ensuring that information is accurate, diagnoses are consistent with the latest evidence, and care is appropriate for them."