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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 FierceHealthcare.com 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.

Physician Calls For Widespread Patient Data Ownership

Posted on October 26, 2016 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 FierceHealthcare.com 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.

At present, patients anywhere in the United States are entitled to access their patient records, but the records are typically controlled by providers. New Hampshire is the only state which provides citizens with legal ownership of the health information, notes Eric Topol, MD.

“That’s completely wrong. That has to get fixed,” said Topol, who spoke at the MedCity ENGAGE show last week. “It should be your data.”  In fact, he calls patient data ownership “a civil right that’s yet to be granted.”

Patient data ownership rules vary across the U.S. In many states, including Washington, Idaho, North Dakota, Minnesota, Wisconsin, Michigan, New York, Maine, Pennsylvania, and Nevada, there was no law in place as of mid-2015 which specified whether patients are providers owned or had property rights medical records. But in a large number of additional states, including Oregon, California, Texas, Georgia and New Mexico, state laws specifically state that the hospital or physician owns the medical record.

Long before EMRs went into wide use, ownership of medical records would occasionally come into dispute, such as when a practice went out of business or a hospital was acquired. The historic lack of clear case law governing such transactions would occasionally lead to major legal controversies during such transitions.

Today, the stakes are even higher, contends Topol, who serves as director of the Scripps Translational Science Institute at San Diego-based Scripps Health. To realize the benefits of “individualized medicine” – Topol’s term for “precision medicine” — patients will have to control their health data, he said.

“We are going to be leaving population medicine – where it’s one size fits all — in favor of individualized medicine,” Topol told the audience. With individualized medicine, patients drive their own care, he said.

The current centralized model of health data ownership actually poses a risk to patients, Topol argues, given the ripe, financially-attractive lure that big databases pose. “We need to decentralize this data because the more it’s amassed, the more it’s going to be hacked,” he contends.

So what of Topol’s vision for “individualized medicine”? Well, here’s how I see it. Topol’s comments are interesting, but it seems to me that there’s an inherent contradiction between one half of his arguments and the other.

If by talking about individualized medicine, he’s referring to what is otherwise known as precision medicine, I’m not sure how we can pull it off without building big databases. After all, you don’t gain broad understandings of how, say, a cancer drug works without crunching numbers on thousands or millions of cases. So while giving consumers more power over the medical records makes sense, I don’t see how we could fail to aggregate them to some degree at least.

On the other hand, however, it does seem absurd to me that patients should ever lack the right to retrieve all of the records from the custody of a provider, particularly if the patient alleges malpractice or some form of malfeasance. If we want patients to engage with their health, owning the documentation on the care they received strikes me as an absolutely necessary first step.

Healthcare Analytics Project Works To Predict Preterm Birth

Posted on August 12, 2013 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 FierceHealthcare.com 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.

A large northern Virginia hospital and a Massachusetts analytics firm are partnering see if data mined from EMRs can better predict the risk of preterm live birth.

The Inova Translational Medicine Institute at Virginia’s Inova Fairfax Hospital is working with Cambridge, MA-based analytics firm GNS Healthcare to create and commercialize computer models to predict the risk of preterm birth, reports Healthcare IT NewsThe two are using next-generation genomic sequencing technology and EMR data to build the models.

The models will be built using ITMI’s large database, which is stocked with data on both normal and preterm family cohorts. GNS will then attempt to link genetic and molecular factors with clinical data and health outcomes, Healthcare IT News said.

Once created, GNS and ITMI will license the models and software — as well as optional access to underlying ITMI data — to academic researchers, health systems and pharma/biotech companies. The ITMI database includes whole genome sequencing (SNP, CNV, SV), RNAseq expression, CpG methylation, proteomic, metabolomic, imaging, EMR, clinical phenotypes and patient survey data for over 2,400 individuals, Healthcare IT News reports.

The two partners are attacking a large problem. As Healthcare IT News notes, 12 percent of babies born in the U.S. are delivered at less than 37 weeks gestation, which causes nearly 10,000 deaths per year and costs $28 billion annually.  Researchers suspect that genetic factors help to prompt preterm birth, though no specific genes have been identified to date.

But there’s many more problems to take on using this approach, and translational medicine projects of this kind are popping up nationally. For example, recently New York’s Mount Sinai Medical Center launched a new program designed to link information stored in the EMR with genetic information provided by patients. As of May, 25,000 patients had signed up for the biobanking program.

I believe this is just the tip of the iceburg. Using EMR data with genomic information is a very logical way to move further in the direction of personalized medicine. I’m eager to see other academic medical centers and hospitals jump in!

Adding Genomic Info to The EMR

Posted on May 15, 2011 I Written By

Katherine Rourke is a healthcare journalist who has written about the industry for 30 years. Her work has appeared in all of the leading healthcare industry publications, and she’s served as editor in chief of several healthcare B2B sites.

Today I read an interesting blog item making the case for including validated genomic test data in EMRs.  The author argues that with the increasing relevance of genomic testing to treatment, it’s critical to offer clinicians access to such data.

As the author notes, some specialties have already begun to tailor drug treatments to individual patients based on their genomic profile.   For example, DNA sequencing of tumors in non-Hodgkin’s and Mantle Cell lymphoma can lead to personalized cancer vaccines that can produce great results, notes writer Gerry Higgins of the NIH.

Such data can also be used for a growing number of clinical situations, such as tailoring Coumadin doses to specific patients and providing psychiatric patients with the appropriate drug.

However, EMRs currently don’t allow for integrating such data, Higgins notes.  To do so, EMRs will need to accept unstructructed data and make it accessible for analysis  via decision support tools.

Until clinicians demand such data, it’s not likely to become a standard part of EMRs.  To date, while oncologists, pathologists and genetics experts are rapidly becoming aware of the value of these tests, the rest of the medical world is just catching up.

But over time, personalized medical treatments like these will become common. To support these treatments,  EMR systems will need to incorporate the tools and the capabilities needed to build on genomic analysis.  If Higgins is right, EMR vendors should get on this right away.