NPR recently published an interesting piece on how some researchers are developing ways to leverage day-to-day medical information as a means of personalizing medical care. This is obviously an important approach – whether or not you take the full-on big data approach drug researchers are – and I found the case studies it cited to be quite interesting.
In one instance cited by the article, researchers at Kaiser Permanente have begun pulling together a dashboard, driven by condition types, which both pulls together past data and provides real-life context.
“Patients are always saying, don’t just give me the averages, tell me what happened to others who look like me and made the same treatment decisions I did,” said Dr. Tracy Lieu, head of Kaiser’s research division, who spoke to NPR. “And tell me not only did they live or die, but tell me what their quality of life was about.”
Dr. Lieu and her fellow researchers can search a database on a term like “pancreatic cancer” and pull up data not only from an individual patient, but also broad information on other patients who were diagnosed with the condition. According to NPR, the search function also lets them sort data by cancer type, stage, patient age and treatment options, which helps researchers like Lieu spot trends and compare outcomes.
Kaiser has also supplemented the traditional clinical data with the results of a nine-question survey, which patients routinely fill out, looking at their perception of their health and emotional status. As the article notes, the ideal situation would be if patients were comfortable filling out longer surveys on a routine basis, but the information Kaiser already collects offers at least some context on how patients reacted to specific treatments, which might help future patients know what to expect from their care.
Another approach cited in the article has been implemented by Geisinger Health System, which is adding genetic data to EMRs. Geisinger has already compiled 50,000 genetic scans, and has set a current goal of 125,000 scans.
According to Dr. David Ledbetter, Geisinger’s chief scientific officer, the project has implications for current patients. “Even though this is primarily a research project, we’re identifying genomic variants that are actually important to people’s health and healthcare today,” he told the broadcaster.
Geisinger is using a form of genetic testing known as exome sequencing, which currently costs a few thousand dollars per patient. But prices for such tests are falling so quickly that they could hit the $300 level this year, which would make it more likely that patients would be willing to pay for their own tests to research their genetic proclivities, which in turn would help enrich databases like Geisinger’s.
“We think as the cost comes down it will be possible to sequence all of the genes of individual patients, store that information in the electronic medical record, and it will guide and individualize and optimize patient care,” Ledbetter told NPR.
As the story points out, we might be getting ahead of ourselves if we all got analyses of our genetic information, as doctors don’t know how to interpret many of the results. But it’s good to see institutions like these getting prepared, and making use of what information they do have in the mean time.