The Patient Lens on Precision Medicine

Jack Whelan, an e-patient advocate and patient with a rare blood disease, spoke at The American Journal of Managed Care’s 4th Annual Patient-Centered Oncology Care Meeting. In his presentation, Whelan explained that patient centricity and education is important for all parties in the healthcare industry to better take hold of.

In 2007, Whelan was diagnosed with an incurable blood cancer called Waldenstrom’s Macroglobulinemia. The disease impacts about 1500 patients each year and there is no known radiation, surgery, or chemotherapy treatment known to treat this disease.

“I become this e-patient, which essentially is electrically connected,” Whelan said. “The most important word on this slide is to become more educated. When you’re told it’s rare and it’s incurable, it’s like being told you’re invited to play a game that you can’t win. And I didn’t like this scenario.”

Whalen explained that e-patients are individuals who are engaged in their own care by being equipped with the skills to help manage their own condition, are enabled to make decisions about their own care, and are empowered to ask relevant questions. The patients ultimately become experts in their own disease through the education they have put themselves through as a means of fully engaging and participating in their own care.

He added that data is an effective means of engaging patients, as employing data constantly not only allows patients to anticipate outcomes and be able to report when the medication is working, and when it’s not working, but it engages all parties of a patient’s care: the patient, the physician, the pharmaceutical industry, policy makers, and payers. Using data to monitor a patient’s progress and response to therapy is exactly what Whalen does, as he is constantly tracking his biomarkers in response to the combination of therapies he’s taking and changing medication immediately if they aren’t working.

Precision medicine not only allows Whalen to discover the appropriate means of treatment for his specific genetic makeup, but it allows him to constantly monitor his progress. Clinical trials include various variables like placebos that monitor data in blocks and analyze it long after the trail is completed, but Whalen said he is able to cheat the system by engaging in his own care and monitoring his own progress in a real-time format.

“That measurement of patient data is really what patient centricity is all about,” he said.