WEDNESDAY, April 16 (HealthDay News) -- 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.
More information
The U.S. Agency for Healthcare Research and Quality explains how
you can
keep track of your health care.