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Data Sharing Pivotal to Personalized Medicine

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Challenges associated with sharing and synthesizing massive amounts healthcare data to improve patient outcomes emerged as a key theme in a   discussion last week on the future of personalized medicine.

The event at the Bipartisan Policy Center in Washington, D.C. urged doctors, policy experts and healthcare-technology leaders to explore ways to advance the field —informing those in attendance and online, as well as shaping a policy brief the center will issue this fall. Notable sound bites and other insights were shared in real-time on Twitter using #personalizedmedicine through a Dell initiative to expand the reach of the discussion to a worldwide virtual audience.

Better, cheaper healthcare

Significant advancements in personalized medicine, which includes genomics, is making it easier for practitioners to tailor medical treatments and preventive strategies to the characteristics of each patient — advancements that supporters say will improve care and reduce costs. Yet progress is being slowed by a number of factors, including the limited sharing of patient information.

Greater sharing would allow medical institutions that are creating patient databases — some with genomic information — to expand the size of the patient pool, thus making it more likely to identify and treat rare conditions, panelists said. It would also allow patients to personally store and share their data with different practitioners, increasing portability. The day that everyone will have every detail about their personal health on their smartphones didn’t sound that far off.

Mollie H. Ullman-Cullere, who structures genomic data in IT systems according to emerging standards, said the federal government is taking steps toward sharing more information with patients, but more effort is needed. She cited a rule change that will allow patients to obtain test results directly from labs.

“How government is addressing healthcare reform is through patient engagement and informing them as active consumers of healthcare,” she said. “Genetics has to be included in that.”

Big data for doctors

The other component of the data-accessibility issue is how medical researchers should go about building massive databases of patient records. The ultimate application is a big-data program that could analyze a patient’s data against similar patients and generate a course of action for the physician.

But with greater access comes privacy concerns, and a need to persuade policymakers and the public at large that the medical community can be trusted with storing and using patient data for the greater good, some panelists said. Data can help practitioners diagnose patients more accurately and quickly, and identify risk factors much earlier. Both capabilities would lower healthcare costs.

Edward Abrahams, president of the Personalized Medicine Coalition, said he’s noticed a vexing dichotomy that policymakers will need to address in order to boost the amount of information that patients share with medical databases.

“The tricky part is that the public wants control over information, but as patients they may think differently,” he said.

Source: Tech Page One