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A Look At The Role Of EMRs In Personalized Medicine

Posted on January 19, 2017 I Written By

Anne Zieger is veteran healthcare consultant and analyst with 20 years of industry experience. Zieger formerly served as editor-in-chief of and her commentaries have appeared in dozens of international business publications, including Forbes, Business Week and Information Week. She has also contributed content to hundreds of healthcare and health IT organizations, including several Fortune 500 companies. Contact her at @ziegerhealth on Twitter or visit her site at Zieger Healthcare.

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.

23andMe Saga Doesn’t Bode Well for EMR Genetics Integration

Posted on December 5, 2013 I Written By

As Social Marketing Director at Billian, Jennifer Dennard is responsible for the continuing development and implementation of the company's social media strategies for Billian's HealthDATA and Porter Research. She is a regular contributor to a number of healthcare blogs and currently manages social marketing channels for the Health IT Leadership Summit and Technology Association of Georgia’s Health Society. You can find her on Twitter @JennDennard.

I wrote about the direct-to-consumer genetic testing company 23andMe back in mid-October, posing the idea that genetic information provided by the patient could only serve to enrich EMR data. I noted, “Genetic testing seems to be about empowering patients to take more proactive roles in managing their health today in an effort to prevent what might happen to their health in the future. It would make sense to share these test results with providers who can aid in that journey.”

Two readers chimed in. One noted that, “No [current] EMR can run genetic risk models or use genetic clinical decision support, [and ] [n]one of these fit into Meaningful Use, so it will be years until the EMR have the capability needed to use genomics.”

Another pointed out that, “the price point on 23andMe was all I was waiting for, and I have my gene sequence already. Yes, there are some risks, but that argument falls into the same category as any technology or innovation – it can be used for good or bad. The value this information brings far exceeds the downsides, and is now an essential part of the data feed to my personal healthcare.”

That last comment is especially interesting in light of the well-publicized tiff going on between 23andMe and the FDA. I won’t waste your time attempting to summarize the string of events that have led 23andMe to stop marketing its products, as well as a class action lawsuit and an official petition to overrule the FDA’s decision. Instead, I’ve compiled a few articles that detail the saga as it has unfolded.

Why Genetic Testing Could Endanger Your Health /

The FDA Drops an Anvil on 23andMe – Now What? /

Founder of 23andMe speaks on FDA concerns /

Can 23andMe Survive the FDA? /

Class Action Lawsuit Filed Against 23andMe /

23andMe Shuts down health-related genetics testing to work with FDA / (Updated 12/6)

As far as the connection between genetic information gathered via commercial means by patients being incorporated into EMRs, it doesn’t look like it will happen easily anytime soon. It seems there are bigger debates brewing over the scope of the FDA’s regulatory power over companies like 23andMe, what the definition of a medical device should be, and the value consumers find in these services. Do they really lead to unnecessary medical tests and procedures? Let me know your thoughts on the 23andMe saga in the comments below. You can also join me this Friday at 12 ET for the weekly #HITsm tweet chat. We’ll be touching on the impact 23andMe’s big genetics data could have on healthcare, provided they’re allowed to stay in business.