Research Issues with Electronic Records

Hester Hill Schnipper, LICSW, OSW-C Program Manager, Oncology Social Work

MAY 22, 2018

  Most of you are aware that patient records (except, presumably, in a very few isolated practices) are electronic, not paper. In theory, this makes lots of things about care more efficient, It is simpler to share information; results are accurate and available to all caregivers; patients at many institutions can access their own records (e.g. our Patient Site). Of course there are problems, too. One that I frequently observe is that, if an error is made in one person's note, it often is copied and pasted and shows up in many notes, taking on a life of its' own. Don't read that sentence and panic; this is never about critical facts. It will be something like saying that the patient's elderly mother lives with her when, in fact, the mother died two years ago. 

  Today's article from The New York Times raises another issue that had not occurred to me. It describes a fledgling research effort at DFCI that needed to gather lots and lots of information about patients' experiences with their cancer treatments. It is clear that having a huge data base of information would be very helpful going forward. The involved researchers quickly discovered that lots of computers and various forms of OMRs (online medical records) can't communicate with each other. Different languages that an interpreter can't bridge....

  Here is the start and a link to read more:

New Cancer Treatments Lie Hidden Under Mountains of Paperwork

by Gina Kolata


Dr. Nikhil Wagle thought he had a brilliant idea to advance research and patient care.

Dr. Wagle, an oncologist at the Dana Farber Cancer Institute in Boston, and his colleagues would build a huge database that linked cancer patients’ medical records, treatments and outcomes with their genetic backgrounds and the genetics of their tumors.

The database would also include patients’ own experiences. How ill did they feel with the treatments? What was their quality of life? The database would find patterns that would tell doctors what treatment was best for each patient and what patients might expect.

The holdup, he thought, would be finding patients. Instead, the real impediment turned out to be gathering their medical records.

In the United States, there is no single format used by all providers, and hospitals have no incentive to make it easy to transfer records from one place to another. The medical records mess is hobbling research and impeding attempts to improve patient care.

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