Patient Data Access News

Cancer Moonshot Adds Patient-Centered Programs for Care Access

At a Cancer Moonshot summit yesterday, Vice President Biden announced new patient-centered programs to boost care access.

By Sara Heath

At a summit meeting earlier this week, Vice President Joe Biden announced a series of initiatives within the Cancer Moonshot mission, including two aimed at boosting patient-centered healthcare by supporting patient access to care.


According to a White House fact sheet, the first of the two newly-announced programs includes efforts to make clinical trials more available to patients. Through a partnership between the National Cancer Institute and the White House Presidential Innovation Fellows, program leaders aim to reinvent the way in which patients, providers, and caregivers learn about various clinical trials.

“The goal is to ensure that patients and their care teams have access to the information they need at the right time, as well as strengthen participation in cancer research studies to help accelerate medical discoveries and treatments for cancer,” the White House statement says.

NCI and the White House Fellows will accomplish this by creating a clinical trial database hosted on, which will involve an application programming interface (API) to share clinical trial information. Advocacy groups, academic researchers, and others working on cancer research will have access to the database.

NCI and the White House Presidential Innovation Fellows will also collaborate with third-party developers, including Smart Patients, Syapse, Cure Forward, and Trial Reach, in an effort to add features to the database such as direct search, data integration, and application building.

The Cancer Moonshot initiative will also include a new program boosting patient access to medications.

The Food and Drug Administration will reshape the process by which patients and providers obtain expanded access requests for investigational drug treatments for serious conditions.

As of late, the agency has been successful in reducing the amount of time it takes for a provider to obtain an expanded access request. Going forward, the FDA will also work to create a “navigator” tool, which will facilitate communication between patients, providers, and drug developers to ease the process of obtaining an expanded access request.

By making this process easier, the FDA is giving patients with few treatment options for their complex and critical conditions access to treatments that may be life-saving.

These advances show that the Cancer Moonshot program, as well as the Precision Medicine Initiative, are not only about using big data analytics to determine better treatment plans. While those efforts are central to the programs, the Cancer Moonshot and PMI also rely on patient engagement and patient data access.

Earlier this year, stakeholders in PMI discussed the importance of facilitating patient satisfaction in the initiative, and establishing trust between patients and providers to gain their participation in PMI.

According to a paper written by Carolyn Peterson, MBI, MS, of Mayo Clinic, understanding patient preferences in health data sharing is a critical component of PMI and the Cancer Moonshot.

Because the research initiatives involved in PMI and the Cancer Moonshot require the use of patient data, it is important for providers to understand how patients want their data used.

“Reaping the benefits of precision medicine, however, will require greater patient engagement with the health care system than is the norm in many settings currently,” Peterson explained.

“Not only will patients be seen in clinical and online settings, as they are today, but also patient information will be reviewed and reused in clinical and research settings in which patients are not present.”

As the Cancer Moonshot continues, it will prove itself to be a nuanced program. While it foremost involves complex big data analytics, it also relies on patients to help contribute that data. Further, the Cancer Moonshot and PMI work to address patient needs, and create personalized, patient-centered treatments.

As a result, PMI and the Cancer Moonshot will likely continue to involve patient-centered programs like those described above, helping to boost patient access to care.

Dig Deeper:


Sign up for our free newsletter:

Our privacy policy

no, thanks

Continue to site...