Patient-Controlled Health Records Could Change Future of Research

WEDNESDAY April 16, 2008 -- Increasing patient control of health records could dramatically change how medical research is conducted, say Children's Hospital Boston researchers.

In a Sounding Board article in the April 17 issue of the New England Journal of Medicine, the researchers noted that the shift to personally controlled health records (PCHRs) will give patients and doctors easier access to records during clinical care and will also have a major impact on the conduct of biomedical research.

With PCHRs, patients have Web-based access to almost all the information -- such as lab tests, diagnoses, medications and clinical notes -- in their medical records. They can decide who gets to see that information.

"Giving patients access and control over their medical records will unlock a whole new world where researchers will suddenly be able to recruit hundreds, thousands, possibly millions of patients from all over the world, and have access to new data sets and populations. Imagine the possibilities this will bring and the impact it will have on bringing research to the bedside," article co-author Dr. Isaac Kohane, of the hospital's informatics program, said in a prepared statement.

More than a decade ago, Kohane, colleague Dr. Kenneth Mandl and others on the informatics team at Boston Children's developed the first PCHR.

While PCHRs offer many benefits, there are some potential pitfalls.

"While this is exciting indeed, without forethought and regulation, the tremendous benefit of PCHRs -- for research and clinically -- could easily be overshadowed by problems that could arise from the unethical and uncontrolled use of a patient's valuable medical information," article co-author Dr. Kenneth Mandl said in a prepared statement.

"Who will have access to the data, for what purposes, and under what sort of regulation? Can patients sell their information? How will we establish and protect their identity? These are the kinds of questions -- among many others -- that we need to ask now and clarify before PCHRs become mainstream," Mandl said.

"While PCHRs may seem futuristic, they are here now and will be widely adopted in the not-so-distant future. Fortune 100 companies are already signing on to develop their own PCHRs for their employees. We cannot afford to be asleep at the wheel. Before they hit prime-time, we need to think about what is at stake and what has to happen -- including regulations and standards -- if PCHRs are to be used to the full extent of their potential," Kohane said.

Posted: April 2008


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