July 2013 Edition Vol.7, Issue 7

An OBR Survey: Ownership and Usage of Oncology Treatment and Diagnosis Data

An OBR Survey: Ownership and Usage of Oncology Treatment and Diagnosis Data (cont.)

No Cancer Is the Same

The impetus for wanting to be compensated for data is stemming from concerns about how the growing use of technology and EMRs in healthcare has and will increase access to an oncologist’s treatment decisions, and that vendors may “spin” or “misinterpret” their decisions or change protocols inappropriately (Figure 4).

More than 90% of surveyed oncologists will have an EMR and patient portal within the next 3 years in response largely to the federal government’s IT requirements to ensure healthcare providers are “meaningfully using” technology (Figure 5).

“It’s a mandate – but at the same time data are king and I need it to remain viable in my area – it’s what distinguishes me from the cancer centers here,” said one respondent from a community practice in Southern California.

Respondents fear that those not practicing medicine may access all this technology and interpret a patient’s data and the oncologist’s decisions with cost—not quality—as a driver, and that those evaluating the data “won’t do it right” given the complexity of cancer care and treatment.

For example, a majority of respondents say it is “difficult to capture” the complete clinical picture of a patient from an EMR.

“What if they use the data to change treatment protocols incorrectly – it may be aggregated in the wrong way, which is dangerous,” a Boston-based oncologist wrote, because a drug or regimen may be favored but ultimately may not work for certain tumors.

Part of the issue is perception. According to 15% of respondents said that researchers analyzing data and making policy recommendations “lack medical knowledge” and “are not oncologists” so they don’t have specific experience with a family or patient.

Despite their significant reliance on data collection technology (be it an EMR or a CPOE system], many oncologists are generally unaware that their clinical data are actually sold. Most surveyed have an issue with those who sell their data—particularly if the data are not blinded. But even if it is, oncologists surveyed are generally unaware that when they license an EMR they may have agreed to share data (Figure 6).

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