It’s something that hasn’t been talked about much, what with the word “repeal” in the air, but what if using EMRs improved the state of medicine and helped biomedical research, giving people with rare diseases more options?
But what if it led to false hope? And what if, as John Rennie, writing at smartplanet.com, ponders, the digitization of record-keeping contributes to “the disappearance of all boundaries, including some that may have traditionally helped to protect medical consumers from quacks — and themselves?”
Rennie reveals that a friend with scleroderma, a poorly understood illness, went to China because treatments in the U.S. were not helping. Rennie cites pilot clinical studies on treating scleroderma with stem cells. “The concept was that if the body’s immune system had turned against it, then perhaps a ‘reboot’ of immunity with fresh cells might alleviate the condition.”
Alice didn’t show any improvement, but Rennie said he had concerns about her going to China and possible quacks who took advantage of her vulnerability. But a conversation with a friend helped him to think differently, and here’s where EMRs come in.
His friend said progress is slow in many diseases because we don’t have enough people enrolled in clinical trials. “Once we fix the country’s medical records problem, that won’t matter anymore,” Rennie writes.
Why? There’s all the standard reasons – help to reduce medical errors and record-keeping costs, and guarantee patients that their medical files that could follow them throughout life.
But EMRs could also revolutionize medical studies, according to Rennie. Finding patients willing to enroll in clinical trials is one of the major obstacles to research. (Psychologists are now using crowdsourcing.)
People are reluctant to be part of clinical trials, even if they might help find a treatment or cure for their condition, because they may be embarrassed and feel like guinea pigs, and may fear the trial’s outcome. Not long ago, a clinical trial found that women taking hormone replacement to eliminate risk for heart disease might actually be exposing themselves to breast cancer, blood clots and strokes, instead.
If everybody’s EMR could be appropriately analyzed and made accessible, “many types of medical studies could be conducted retroactively by sifting through thousands or millions of relevant patients’ health histories,” Rennie writes, giving patients the freedom to pursue a wider range of medical options.