Patients want you to share their EHR data

A majority of cancer patients said they were willing to share their electronic health information--keeping privacy in mind--if it meant improving the quality of their overall care, according to findings from a University of Pittsburgh Medical Center study released this week at the American Society of Clinical Oncology meeting in Chicago.

The researchers reviewed two data sources to determine patient perspectives on electronic health information: a 2010 survey of more than 7,400 cancer patients by LIVESTRONG (the Lance Armstrong Foundation) and results from the National Cancer Institute's 2007 Health Information National Trends Survey that queried the general public.

Among patients living with active cancer, 82 percent said it was "very important" that their providers were able to share their medical information with each other electronically, while 81 percent said it was "very important" that they also receive their own medical data electronically. Among the general public, those rates were 48 percent and 52 percent respectively.

Many individuals affected by cancer thought that researchers should be able to use their data, said Ellen Beckjord, PhD, an assistant professor of psychiatry at the University of Pittsburgh.

"Most compelling to me, as a researcher, is the willingness of almost 60 percent of the cancer patient respondents to have their information de-identified to support research activities. This finding could lead to further research using electronic health records," Beckjord said.

For more information:
- see the study abstract
- view the UPMC announcement