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‘Holy grail’ of medical study

Patient records database planned

Inside an otherwise ordinary office building in Lower Manhattan, government-funded scientists have begun collecting and connecting together terabytes of patient medical records in what may be one of the most radical projects in health care ever attempted.

The data – from every patient treated at one of New York City’s major hospital centers over the past few years – include some of the most intimate details of a life. Vital signs. Diagnoses and conditions. Results of blood tests, X-rays, MRI scans. Surgeries. Insurance claims. And in some cases, links to genetic samples.

The effort is being duplicated at 10 other sites across the country using data from hospitals, academic research centers, community health clinics, insurers and other sources. If all goes well, by September 2015 they will be linked together to create a giant repository of medical information from 26 million to 30 million Americans.

Nothing of this scale has been built before, and researchers say the potential of the network to speed up research efforts and to answer questions that have long vexed scientists cannot be overstated.

But the creation of the network presents ethical questions about who owns and controls the data, how to protect patient privacy, and how research questions will be prioritized.

“Both the opportunity and the anxiety are pretty electrifying,” said Francis Collins, director of the National Institutes of Health.

The origins of the patient project lie in an obscure part of the 2010 Affordable Care Act. As part of the nation’s health care overhaul, Congress created an independent nonprofit group to help patients and their doctors make better-informed decisions about care.

Dubbed the Patient-Centered Outcomes Research Institute, or PCORI, the organization’s mandate is to launch, fund and coordinate research on “comparative effectiveness” – to find out which drugs, devices and treatment options are more effective than others.

Do certain sets of behavioral interventions work better than others for weight control, for example? Might certain antibiotics work better for cystic fibrosis patients, based on their genetic profile?

Such questions have been surprisingly difficult to answer, despite the thousands of clinical trials published every year.

Physicians have long grumbled that few studies can be translated into practical advice. Some studies are too small to draw any definitive conclusions. Others include patients diagnosed with a single condition, while most patients are more complicated – they suffer from multiple issues.

It isn’t uncommon for studies to contradict each other, and there’s no way for clinicians to know which one is right, because they often use different methodologies.

“The whole idea was to create a way to do the kind of research that would inform the real world,” explained Eugene Rich, who researches health care effectiveness for Mathematica Policy Research, based in Princeton, N.J.

The database – an idea that has been talked about for years – holds the hope that some of those obstacles can be overcome.

“We will be able to get answers with a degree of certainty that we’ve never had before,” said Joe Selby, PCORI’s executive director, who calls the patient records network “the holy grail” of health care research.

Collins said the value of the network is that it gives scientists the ability to ask an endless number of questions about a massive patient population with great speed and little cost.