Readers Write: CMS: Unlocking Data for Patients

CMS: Unlocking Data for Patients
By Nassib Chamoun

Nassib Chamoun, MS is founder, president, and CEO at Health Data Analytics Institute of Dedham, MA.

The digitization of medicine over the last decade has driven exponential growth in the quantity of medical data, measured in the digital footprints of billions of care events each year. Yet this data explosion has made little difference for patients, who still struggle to access, understand, and share their medical data.

Several barriers have kept patients from the benefits of their data. A lack of commonly accepted and consistently implemented software standards inhibits access to silos of data generated by providers, insurers, and electronic health record vendors. Patients also lack tools for accessing and understanding their data.

Encouragingly, each of these barriers is now crumbling as years of effort by industry, entrepreneurs, and government are beginning to bear fruit.

The Centers for Medicare and Medicaid Services (CMS) has created MyMedicare.gov, which connects 40 million Medicare fee-for-service beneficiaries to any medical claim in the last three years that CMS has paid on their behalf. Although the site provides beneficiaries with valuable information, individual patient records can run to hundreds of pages,  an overwhelming user experience. Equally important, MyMedicare.gov contains patient records only for the last three years.

In recognizing the need for a better patient experience, CMS released Blue Button 2.0, an open Applications Programming Interface (API) that allows developers to build apps to help patients access their medical information and decide which apps – if any – can access their personal data.

CMS is further catalyzing this ecosystem of developers and users with its Interoperability and Patient Access Rule, released in May 2020, whereby millions of people covered by commercial insurance, Medicaid, and Medicare Advantage plans will soon have access to their medical histories. While enforcement is somewhat delayed due to the COVID-19 pandemic, the CMS rule also expands the types of information available by requiring healthcare providers and electronic health record vendors to give patients access to certain clinical information, such as lab values, through the third-party applications of their choice.

Blue Button 2.0 and the Carin Alliance (a non-profit devoted to enabling consumers and their authorized caregivers to access more of their digital health information with less friction) are enabling dozens of third-party apps to extract data from large documents and reformat it in a way that lets users and their caregivers quickly understand their medical histories and conditions.

These apps focus primarily on assembling health information from a variety of sources and presenting it more simply to patients. Other tools offer advanced analytics, including highly personalized risk information, to help patients make more data-enhanced healthcare choices.

For example, a patient in her 80s could ascertain the probability of requiring hospitalization from heart disease in the next 12 months and plan accordingly. In the future, risk profiles may also be combined with data from real-time monitoring tools, such as smart watches and smart speakers, to provide more customized insights and enable deeper, more impactful conversations between clinicians and patients.

What’s exciting is that the combined initiatives of open standards, improved data access, and a thriving app ecosystem have established the foundation for sustained innovation. Add an inrush of entrepreneurial talent and venture capital investment and we will likely see numerous new software innovations that accelerate the transformation of huge quantities of difficult-to-use data into usable insights for patients.