Faster Cures is a novel organization created by the financier Michael Milken, who also founded the Prostate Cancer Foundation. Faster Cures’ goal is to find new ways to bring drugs to market faster — the average is 17 years from conception to the time the drug hits the market.
Faster Cures sends me a newsletter, and in this issue, they discuss one major problem with the American healthcare system, which is that we lag behind all developed countries in health information technology (IT). What we need is a national system of electronic recordkeeping. This would helps in many ways — for one thing, if records could be shared easily among health professionals, errors would be minimized.
What stands is the way of developing an electronic recordkeeping system in this country are strict federal privacy laws like HIPAA (Health Insurance Portability and Accountability Act, 1996). Naturally privacy is a priority, but some people think HIPAA has done more bad than good. The other consideration is financial — one doctors said it would cost him $100,000 to computerize his practice. We just have to keep working on these problems and try to resolve them sooner than later.
The part of this that interests me and Faster Cures is the role that IT can play in advancing research and finding cures for disease. The way things are now, researchers are often reluctant to share information with their colleagues. So having a national electronic database of medical information available to ALL can potentially be a godsend. Of course, the details would have to be worked out.
The issue of electronic recordkeeping is close to my heart because of something that happened to my Dad. He had the bad luck to have a stroke on a Sunday. That is not a good day to become critically ill — hospitals have fewer staff and doctors are hard to contact. In my Dad’s case, the doctors weren’t sure what was wrong with him when he was admitted. They did some scans and found a growth on his urethra which they thought could be causing paralysis. They asked my mother to contact my father’s urologist ASAP because they wanted to talk to him and get his medical records if possible.
My Mom called the urologist’s office and ended up speaking to the doctor’s wife, who was totally uncooperative, so no information at all was conveyed. It’s four years later, and I wonder whether my mother has ever gotten over this rejection. She was grief-stricken — after all, her husband’s life was on the line. Imagine if there had been an electronic database of medical records accessible to the doctors in the ER. My father might have been properly diagnosed earlier (the growth turned out to be benign), and the outcome might have been better. There is a very short window of opportunity to treat a stroke.
Apparently, an organization called the American Health Information Community is already working on a national healthcare database. Note that Faster Cures’ recommendations emphasize the importance such a system could play not just in improving patient care but in advancing research. Here is an excerpt from their newsletter: