Big Data, Innovation and the Individual Experience Come Together to Put Patients First

Big Data, Innovation and the Individual Experience Come Together to Put Patients First

06.11.14 | By John Castellani

For millions of cancer patients and many others suffering from a chronic disease, access to new innovative treatments is critical. As an industry, we strongly believe that all patients should have access to the medicines they need to live long and healthy lives. Equally important, as discussions around health care costs continue, we must ensure that patients remain at the center of everything we do.

Unfortunately in today’s health care environment, this is not always the case. The current insurance model discourages preventative care, while encouraging more costly acute care. For example, patients pay an average of about 20 percent out of pocket for their total prescription spending, while inpatient and outpatient hospital care costs just four to seven percent, respectively. Additionally, new studies suggest many Health Insurance Exchange plans’ cost-sharing reductions are inconsistent and fail to lower the cost of prescription medicines and visits to the doctor.

The Institute of Medicines of the National Academies (IOM) recently explored cancer patients’ access to lifesaving medicines. The IOM workshop focused on the value and cost of oncology medicines – an issue which PhRMA continues to discuss. Interestingly enough, Dr. A. Mark Fendrick of the University of Michigan noted at the session a need to shift the conversation surrounding costs in medicines from “how much, to how well.” Any conversation surrounding oncology drug costs must take into account the overall value medicines bring to patients and society as a whole.

To better understand this important issue, we asked contributors to PhRMA’s Conversations forum last week to provide insight to the question:

How do we promote patient-centered cancer research and care in an era of increasing pressure to control health care costs?

Respondents emphasized the importance of effectively utilizing big data to achieve patient-centered cancer research. As Marcia Kean, Chairman, Strategic Initiatives of Feinstein Kean Healthcare noted, “big data can have big results for cancer innovation.” To get there, she points out that patients must own their data to ensure it’s used constructively and participate in programs that advance innovation.

To help patients truly own their data, the unique situations of the individual must be considered. As a result, the Cancer Support Community (CSC) founded the Cancer Experience Registry to track the social and emotional experiences of cancer patients and their families. The program provides survivors with an outlet to share what issues matter to them and uses that information to determine how experiences can be improved. As Margaret Foti, CEO of the American Association for Cancer Research, emphasized, learning from the more than 14 million cancer survivors living in the U.S. can drive care for the millions more that are fighting to survive.

While innovation in oncology is cutting edge, “we are hampered by traditional tools for determining the value of new medicines and medical technologies, which typically rely on point-in-time assessments of product value and the average impact that a product has over a population,” said Randy Burkholder, PhRMA’s Vice President of Policy.

Ultimately, patients must remain our focus at all times. It is essential that we learn from the data available and continue to focus on patient-centered research that gives individuals in need access to needed medicines.

I would like to thank our contributors for sharing their perspectives on this critically-important topic. Please share your own thoughts in the comments section of the Conversations forum and on Twitter and Facebook. We look forward to hearing from you.


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