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Medical research takes a lot of time. Clinical trials and the unfolding of outcomes, like whether a sick patient is cured of an ailment and suffers no reoccurrence months or years later, can take decades. But the collection, sharing, and analysis of data involved with medical research should get much easier.
The seeds for significant advancements are being planted now with the push to digitize medical records and other clinical information. In the years to come, there will be undoubtedly many more -- and much richer sources -- of electronic patient data to help medical research efforts.
Digitized records about populations of patients -- like those suffering from chronic illnesses such as asthma, degenerative disease like Alzheimer's, and potentially terminal illnesses like cancer -- could aid doctors and researchers in more quickly identifying the best candidates for clinical trials, and help uncover patterns and new insights based on information that in the past might've been forever buried in paper records.
Of course, privacy concerns of patients are legit. No one wants unauthorized snoops digging into personal health information. But even the collection of aggregate, de-indentified data from e-medical records -- with the consent of patients -- will help researchers in the years to come.
Some of the most powerful discoveries will undoubtedly come from analyzing data from patients' e-medical record, plus their genomic information. Personalized medicine promises to use that data analysis to better match patients with the most effective treatments based on individuals' genetic profiles, medical histories, and their other health issues.
Such research is underway in places like Coriell Institute for Medical Research, a non-profit, biomedical research institution and a leading biobank resource for human cells and DNA, which is working on a national genomics project with Ohio State University Medical Center, Fox Chase Cancer Center, Cooper University Hospital, Virtua Health, and Helix Health.
The Coriell Personalized Medicine Collaboration will create a secure Web-based technology environment for about 100,000 patients who are being recruited by the project partners to provide DNA samples and other medical information.
The goal of the project is to better understand how patients' personal genomic information, along with other information contained in e-medical records, can be used to make better decisions about an individual's healthcare. Researchers and healthcare providers will use the platform for developing new medical and therapeutic treatments tailored to patients' genetic and other health-related data.
"CPMC is pioneering the integration of genotypic information and risk reporting into the e-health record," explained Margaret Keller, associate professor, Coriell Institute for Medical Research in Camden, N.J.
"The goal is to supplement clinical-based patient data that exists in the EHR, with genetic information," Keller said in an e-mail interview with InformationWeek. Much of this integration will come with the usage of the health industry's HL7 data exchange standard, she said.
The genetic information from participating patients will come from DNA samples they'll provide.
"Patients will have their sputum DNA extracted and analyzed at Coriell," said Dr. Clay Marsh, director of the Center for Personalized Health Care at Ohio State University, which is looking to enroll within the next three months 1,000 to 2,000 study participants for the project.
"Each patient participating will have their own secure portal access site to their own information," he said in an e-mail interview with InformationWeek.
"The patients will be able to see their own information, as will their physicians, if they give us consent to include their doctors. Otherwise, they will have access without their physicians," he said. Ohio State University officials and researchers are working with Coriell to clarify the details on how EMR data will be moved to Coriell for the project, he said.
"We will protect the identity of all subjects, and with our institutional review board approval, would need clear, informed consent from each individual before moving any EMR data from OSU to Coriell," he said. "In this way, the participants will be in control of the flow and protection of their EMR data related to the study."
For the project, risk reporting algorithms that are developed by the CPMC geneticists are transformed and imported into a genetic variant database, explained Keller.
"This database contains relative risk values for each single nucleotide polymorphism (SNP) that is on the risk report as well as data from existing federated databases," she said.
A SNP is a change or variation in a DNA sequence.
"In some people, these changes vary from the population at large and segregates to a group of people that have disease or risk of disease at a higher frequency than people without disease or without risk," explained Marsh.
"The DNA chips we are using will identify these specific changes, of which a highly specific group will appear on the Web portal that the subjects have access," he said.
"By using standard Web-based technologies, such as XML and SOAP, the main data repository is annotated and supplemented with external data sources, furthering the value of the knowledge repository," said Keller.
Data storage for the CPMC project is being handled by a Hewlett-Packard EVA8100 storage array network, which offers a flexible, open, standards-based storage infrastructure enabling an adaptive infrastructure, she said.
"We are committed to creating the future of medicine to improve people's lives through personalized medicine," Marsh said in a statement. "Partnerships like this one will allow us and our community to experience the future of medicine today."
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