The US health system can be a confusing muddle, even for experienced navigators. One problem that arises again and again is the reliance on patients to provide their complete health information to their providers, an expectation that cannot reasonably be met when a patient has a long history of tests, diagnoses, treatments, interventions, referrals, hospitalizations, and prescriptions. Currently, few people can easily access their complete health information in interoperable forms, denying them the opportunity to simply sign a form or press a button and have their providers supplied with all of the pertinent information for their condition and care.
This is not only inefficient but can be harmful. The incomplete picture many consumers are able to draw of their health histories might leave out vital information. This could lead to delays in treatment or exacerbation of conditions.
We agree with the rule’s principle that “every American should be able, without special effort or advanced technical skills, to see, obtain, and use all electronically available information that is relevant to their health, care, and choices – of plans, providers, and specific treatment options.” Improving interoperability and consumer access to their personal health information as well as public information has the potential to improve care, coverage decisions, and health outcomes; reduce uncertainty and waste; and give consumers more confidence in their health care decisions and the decisions of their providers. This does not mean, however, that we should expect consumers to use their new access to become perfectly adroit in navigating the health care system or shop their way to savings. The amount of shopping and savings we can realistically expect is very small and should never be the impetus for significant systemic change. Most people do not manage their health, care, or costs independently. They make decisions about treatments and choices about coverage options in partnership with their providers and family caregivers.
Nor should we create heavy new obligations and burdens on consumers to direct data exchanges from place to place. Players within the health system must be responsible for designing systems to identify where information should be shared, seek necessary permissions, and shepherd the information from entity to entity, rather than waiting for overburdened consumers, families, and caregivers to spontaneously request it and deliver it to the appropriate destination.
Finally, we must never overlook the real privacy concerns created by increased data sharing and must prohibit the information from being used in any way counter to the consumer’s wishes. Preserving the safety, privacy and trust of beneficiaries using mobile devices to access, use and direct their health information must be at the forefront of every regulatory decision in this space. The Administration must do more to protect people’s privacy and prepare them for this fundamental transformation in health information exchange and protection. This is an opportunity for deep education that will benefit consumers for years to come…
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