An OBR Survey: Ownership and Usage of Oncology Treatment and Diagnosis Data
By Bryan Cote
According to an OBR study conducted in January 2013 that could have broader implications for how much access others will have to cancer patient data – and at what price – oncologists overwhelmingly believe that their practices own the data they collect about cancer patients.
OBR’s survey of 155 board certified oncologists and hematologist-oncologists featured responses from general oncologists (31%) and specialists in breast, lung or hematology (46%) (Figure 1). The study sought to uncover oncologist attitudes about diagnosis, treatment, and outcomes data exchange in today’s cancer care marketplace.
Three-quarters of oncologists surveyed view the data they collect as information based on their own personal clinical judgment and decisions despite the fact that they are basing their decisions on a cancer patient’s own clinical history and diagnosis (Figure 2).
“The data doesn’t really belong to the insurer or the patient. I generate that information. I’m responsible for it,” a 65-year old oncologist from Maine told OBR.
Surveyed oncologists believe that their patient encounters require a litany of complex clinical decisions unlike other specialists. An OBR survey of primary care physicians conducted at the same time revealed a different opinion – only 52% of PCPs believe the data collected are theirs.
“Medical decisions for cancer patients are more complex – each decision must be tailored and the data drawn from those decisions are my intellectual property – it’s a history of how I treat, think.”
One-fifth of respondents added that they have treated more specialized cancers (i.e., refractory cancer), which makes the data and their decisions related to treating these complex tumors more valuable.
In the next two years OBR’s study projects that more oncologists will begin to use patient data for more than patient benefit. Nearly half of surveyed oncologists said they will likely seek some type of compensation for the data they generate perhaps through collaboration with other oncology groups, or—as some suggested—through the development of data warehouses whereby groups “pool data” to create leverage and add a revenue stream (Figure 3).