Former Vice President Joe Biden speaks during a signing ceremony for the 21st Century Cures Act.
In a commentary for Forbes, former Vice President Joe Biden criticized CMS Administrator Seema Verma’s address at HIMSS earlier this month. Her speech focused on the announcement of MyHealthEData, a project aimed at improving interoperability and giving patients more control over their health information.
“Unfortunately, the announcement lacked many specific actions to effectively implement the initiative,” Biden wrote. “I agree with the administration’s stated goals, but real action is needed — and now is the time.”
Through projects like the White House Cancer Moonshoot and the Recovery Act, the Obama-Biden administration pushed for the adoption of electronic health records. But EHRs have not reached their full potential due to one factor: the absence of interoperability.
Although the previous administration’s Blue Button and Sync for Science programs have moved toward the goal of giving patients access to their data, there’s still work to be done.
“While I agree with the administration goals stated above, these health data issues are not new and we must all get serious and specific about the details to take action in the near term,” Biden wrote. “The industry has had ample opportunity to voluntarily address the issues of interoperability and putting data in patients’ hands, and they have not done so. Now is the time to do something about the data siloes they have created — to improve health and extend lives.”
To that end, the former vice president and co-chair of the Biden Cancer Initiative highlighted the key aspects of where the healthcare industry needs to go.
A Deep-dive Into Specialty Pharma
A specialty drug is a class of prescription medications used to treat complex, chronic or rare medical conditions. Although this classification was originally intended to define the treatment of rare, also termed “orphan” diseases, affecting fewer than 200,000 people in the US, more recently, specialty drugs have emerged as the cornerstone of treatment for chronic and complex diseases such as cancer, autoimmune conditions, diabetes, hepatitis C, and HIV/AIDS.
For one, patients shouldn’t have to boil the ocean to get access to their health data. Instead, there should be an easy way for consumers to give doctors authorization to share their data with specific entities. Better security measures should be put in place as well. Additionally, researchers should have a simplified way to interact with each other and patients should be informed of when they qualify for a clinical trial.
Biden outlined four actions to make these goals possible:
- Providers should have to give patients their complete medical record in electronic form within 24 hours of a request.
- The Center for Medicare and Medicaid Innovation needs to “invest in a patient data system that brings data from disparate formats and care providers into a uniform patient data portal.”
- HHS must expand its agreements with the EHR vendors participating in Sync for Science. Plus, more pilot programs — like one focused on cancer — should be created to give patients the chance to contribute their records for research purposes.
- The National Cancer Institute should team up with its network of hospitals and patient groups to develop a “trust,” which allows data contributors and users to be the “trustees” of certain information.
“There is so much promise, not only in what we can accomplish in the fight against cancer, but in so many areas of health and medicine, but we need to get out of our own way and focus on patient outcomes as our north star,” Biden concluded, noting that this path is the aim of the Biden Cancer Initiative.
Photo: MANDEL NGAN, AFP/Getty Images
