13 May Health care information technology spurs advances in personal medicine
Editor’s Note: Phil Loftus spoke at WTN Media’s Digital Healthcare Conference on the topic of “Research Driven Genetic Sampling: Linking Results to EHRs to Deliver Personalized Medicine”. Click here to view his presentation.
MADISON – In the future, it’s possible that medicine will become less one-size-fits most, and more personalized, based on proof of what works best for you.
Health care industry initiatives driving advances in personalized medicine include technologies linking informatics with genotype and phenotype data to produce custom-built solutions to illnesses.
Milwaukee-based Aurora Health Care highlighted two of its programs through which data is used to build a more personal health care system for patients at WTN Media’s seventh annual Digital Healthcare Conference 2009 last week. Speaking on the topic, “Research Driven Genetic Sampling: A Step Toward Personalized Medicine,” Aurora chief information officer Philip Loftus said this early-stage work is an effort to use resources to improve care.
“Personalized Medicine: what does it really mean? There’s growing literature around evidence-based best practices in medicine to personalize it,” said Loftus, noting that Aurora is attempting to link phenotype and genotype information to enhance patient experience.
Loftus called Aurora a “numbers driven” organization, in presenting how it approached developing its personal medicine initiatives. The non-profit health care organization, in fact, has been named one of the”100 Most Wired hospitals” for several years running by a trade magazine, singling out the organization for its good use of information technology.
It made sense, Loftus said, to tie performance metrics to care, which led to a partnership with the University of Wisconsin-Milwaukee School of Nursing and Cerner Corporation. The Knowledge-Based Nursing Initiative involves researchers, computer engineers, nurses and information technology professionals in applying informatics to the work nurses perform.
This project, in part, is developing a “nursing knowledge repository” that turns a wealth of information into “actionable knowledge,” which is embedded into an electronic information system.
“They liked this because for the first time they collected data relevant to them,” Loftus said of the practicing nurses’ experience. “It gives them direct recommendation and advice on treatment in real time.”
Aurora this year also launched a robot-enabled biorepository to collect and store tissue samples. This ORBIT (Open-Source Robotic Biorepository and Informatics Technology) biobank will enable Aurora to collect large amounts of tissue from consenting patients for use in individual patient care, and also for research.
Loftus explained that ORBIT’s automated collection, storage and analysis of tissue – blood samples to start – will enable the ability to link to electronic health records, and also to link it to a genetic sequence database. Tissues used in the open biobank will be stripped of identifying information by two “Honest Brokers” at Aurora, who are the only individuals that funnel the samples.
“It always was planned to be open and loop to collaborate with other researchers,” Loftus noted.
What does it mean for patient care? Loftus explained that such a databank could provide early warning of a genetic risk, and information on effectiveness of certain treatments, some of them high cost therapies which may not have an individual benefit.
“If a physician is faced with multiple therapeutic options, if you can do it as evidence based, you can get the most effective treatments and avoid the cost of trying all the treatments,” Loftus said, noting that companies benefit from biorepositories by being able to better market drugs based on known side effects to patients.
Aurora this winter began collecting blood samples from patients at its St. Lukes Medical Center in Milwaukee. Loftus said so far, about 75 percent of patients have agreed to add their blood to the repository. Consent is gained at the time of tissue collection and renewed annually, and patients are able to withdraw consent at any time. About one patient pulls consent each day, according to Loftus.
In addition to blood, other specimens such as saliva or tissue could be collected down the road. After collection, a robot extracts DNA from the blood, bar codes the specimen and stores it in a freezer that holds up to 76,800 vials. Bar coding links the specimen with an individual’s electronic medical record. When used for research, however, identifying information is stripped, ensuring patient privacy and complying with privacy laws.
”Most patients, not surprisingly, say why not submit a sample for research purposes. At what point do you go back with another consent that says we want this to be used for something specific? You wonder whether you need to have genetic counseling up front,” questioned Dr. Tom Handler, research director with Gartner Inc.
Loftus explained that the consent piece turned out to be the longest part of the ORBIT project, saying, “In the end, it made sense to make this close to the standard consent form for any treatment in our organization. Quite a few organizations have looked at it as focusing research data in use of clinical trials and that’s where the internal review board started out in their reviews.”
Dr. Barry Chaiken, DHC conference chair, questioned how ORBIT is related to data mining projects such as controversial commercial ventures at companies like Google, asking, “If you do monetize this, will there be the ability for an individual to benefit?”
Loftus said Aurora does not envision using ORBIT as a revenue stream, but rather a research tool.
ORBIT also can “support personalized medicine at an individual patient level,” Loftus said. As such, Aurora joins a growing field, according to a new report by the Personalized Medicine Coalition. The Case for Personalized Medicine, highlights advances that have helped improve the way serious conditions such as cancer, cardiovascular disease, infectious diseases, and transplantation medicine can be prevented, diagnosed, and treated.
Additional Digital Healthcare Conference Coverage
- The healthcare IT executive perspective
- Health IT Stimulus Act: The future of healthcare IT will not come easy
- Mental illness and behavorial health pose challenges for electronic medical records
- Marshfield Clinic delivers on clinical transformation
- Health technology at home: putting the power in the patient’s hands
- Scenario planning can help prepare your organization for the IT-driven future of health care
- Social networking can be good for your health
- Conference highlights Digital Health Information week
- Dr. Barry Chaiken: A new tool to engage the clinical community