Pancreatic cancer was one of the first areas to receive a Precision Medicine Center of Excellence designation when the Johns Hopkins Individualized Health Initiative (inHealth) was launched in 2017. The university-wide personalized medicine collaboration aims to use medical data to improve health outcomes for patients.

Now, with a database of records from some 14,000 patients, the pancreatic cancer center can serve as a successful model for ongoing efforts to build a repository of genomic data to benefit patient care for individuals with cancer, says former co-director Lei Zheng, M.D., an oncologist and gastrointestinal cancer specialist. 

Precision Medicine at Work

For every patient coming to Johns Hopkins for pancreatic cancer evaluation, or undergoing a biopsy or surgery for pancreatic cancer (about 600 patients per year), experts at the center perform genomic sequencing on the tumor sample and look for inherited mutations. A computer program flags genetic mutations for which matched targeted therapies are available, then sends that information by email to the patient’s doctor and asks them to discuss the results with their patient. They send the same information to patients and ask them to discuss the results with their doctor.

But because there are only limited targeted therapies approved by the U.S. Food and Drug Administration for pancreatic cancer, the computer program also highlights potential clinical trials that might be appropriate and sends that information to the physician as well as to the molecular tumor board, a group of experts in pancreatic cancer within Johns Hopkins. The tumor board then discusses the person’s tumor mutations, potential clinical trial matches and provider input, and adds their notes and recommendations into patient electronic health records, where they can be viewed by the providers and patients.

Additionally, every patient who has tests ordered is asked for consent to share their data with the genomic research registry for pancreatic cancer, which allows investigators at Johns Hopkins to use their information — and leftover tissue taken for biopsy or during surgical procedures — for research purposes.

The work continues. To improve communication with patients who come to Johns Hopkins for a second opinion but who choose to receive care with their community oncologist, Zheng and colleagues are now working on a patient-oriented mobile app and companion application within the MyChart patient portal to store information on tumor sequencing and whether there are appropriate clinical trials, as well as patient’s clinical and treatment information.

“In some cases, a patient may not be immediately ready for a trial,” Zheng explains. “Through this program, the system will flag the provider and trial investigator when a patient has finished chemotherapy and might be a good candidate, for example. That’s the last piece of the puzzle, what I call a patient navigation system.”

The goal is to replicate this model for other cancers at Johns Hopkins, and nationally through a consortium of pancreatic cancer centers called CANOPY, he says.