KANSAS CITY, Mo — The federal government is in the process of collecting the medical records of more than 30-million Americans in an effort to create a massive medical database. This unprecedented effort is being organized by the Patient Centered Outcomes Research Institute, or PCORI, a non-profit organization created by Congress as part of the Affordable Care Act.
Once all these medical records are collected by the fall of 2015, researchers will have access to them and will be able to compare the different treatments applied to the same diseases – to determine which treatments work best.
“Because of our ability to look at large amounts of data and analyze the intricacies of that data, now all of a sudden that is becoming much more important to us,” said John Carney, CEO of the Kansas City-based Center for Practical Bioethics.
In order to collect this data, patients must first give their doctors permission to share it. But unbeknowst to most people, they give their permission whenever they sign the patient consent form a doctor requires before treatment. One are where patients are aware their medical information is being used for research is whenever they take part in clinical trials. But Carney says clinical trials are restrictive because they involve a small group of people. This national database will give scientists access to millions of medical records of people suffering the same diseases.
“The problem is, do we take the necessary steps to protect the information in a ways that cannot then be re-identified back to a single individual,” Carney said, citing privacy concerns as a potential problem.
Because many hackers target medical records, Carney wants to make sure a patient’s medical information stored in this database is not able to be traced back to that person. PCORI promises there will be no personal information connecting a specific person to a specific medical record. They simply plan on collecting the raw data for research purposes.
“We have had abuses in the past where people have been identified,” Carney said, “so some of the concerns are well-founded. But we find that most patients who have any type of illness or injury are willing to share that information if it means it’s going to benefit somebody else.”
Carney adds that right now, many doctors are over-prescribing or ordering unnecessary treatments simply so the hospital can get reimbursement. He believes this research will help bring an end to this type of abuse by giving all doctors better guidelines on how to best treat certain diseases.
“The purpose of conducting these types of research is good for all of us. It helps improve services for everybody,” Carney said. “ They look at how is it that this particular situation occurred, what happened as a result of it, is your medicine working, is your exercise plan working, those types of things.
“The real issue for most of us is making sure the de-identification process is rigorous enough that it disconnects my personal medical record from the collection of the big data.”