Twenty five years ago, when I wrote a weekly women's page for my local evening newspaper in the U.K., The Dorset Evening Echo, I was involved in a campaign to raise funds to buy a mammography machine so local women could have access to the latest early breast cancer detection technology.
I was invited to be on a panel made up largely of doctors to see the funds raised were being used wisely. I was stunned to discover that no records were kept to check how many lives had been saved or prolonged by having access to this machine.
When I posed the question a doctor looked at me aghast," We don't have time to keep records!"
Fifteen years on, a friend of mine in England eventually raised the $20,000 needed to fund a week's stay at a cancer hospital in Mexico that offered a "miracle" cure for terminal cancer patients that involved shark fin, apricot stone capsules, a raw fruit and vegetable diet and eight coffee enemas a day.
My sister and I visited our friend there as we live relatively close by in Los Angeles. She was one of about 40 terminally ill patients from around the world who had struggled to raise the money to try this one last ditch attempt at life.
I asked a doctor their success rate. He had no idea because they didn't follow up to see how patients were doing once they left the hospital. My friend died a few week's later. I suspect all the other patients did too.
Even in this modern computer era, when sharing digital health data could save millions of lives, there still isn't a standardized system in place.
In his new book Your Life, Your Health, Sharing Your Digital Health Data Could Save Your Life, health care advocate Joseph H. Kanter reminds us that 400,000 people die needlessly in the U.S. every year because of misdiagnosis and medical errors.
"A learning health system will help prevent that. Standardized electronic health records will save millions of lives within ten years," said Kanter.
Kanter, 91, Chairman of the Board of the Joseph H. Kanter Family Foundation, has been a pioneer behind introducing a standardized system since he was diagnosed with prostate cancer twenty years ago. He was shocked to discover that no scientific data was available to show which treatment worked best for patients like him.
Kanter learned that most doctors' recommendations since Babylonian times were based on anecdotal evidence from doctors' and patients' own relatively limited observations and experiences.
Using the acumen gained from 50 years experience as a successful businessman, Kanter found that the best treatment for his prostate cancer was "watchful waiting."
Then he set himself a new goal: to achieve a standardized system of 50 million personal electronic health records that could show the most effective cures for all diseases.
In his book, Kanter outlines a strategy for implementing a Learning Health System using electronic health records.
He explains how once that's achieved, patients and doctors will be able to access the data on every disease and how each patient was treated to see which treatment worked best, taking into consideration patient age and other illnesses. The data will be stored using a patient number, so anonymity is assured.
Realizing this needed to be a bipartisan mission with both political parties working together, Kanter convinced Former Republican Senate Majority Leaders Senators Bob Dole and Bill Frist and former Democratic Senate Majority Leader George Mitchell to get involved.
Senator Dole (R-KS), himself a prostate cancer survivor, said, "It would have been nice at the time to have an outcomes database and review it with a doctor who could say, 'Well, we've done this, this, this, and this, seems to be the most successful.'"
Kanter, along with Senators Dole, Frist and Mitchell and other health organizations, did convince the Government to allocate $30B to doctors and hospitals to implement electronic records as part of the Obama administration's $800B 2009 stimulus program.
The problem is that they weren't standardized and some thirty different systems are in operation, so it's not possible for all doctors to access the information.
It became clear to Kanter that the Government couldn't implement a standardized system without help from private enterprise. "My foundation is working with other groups who believe they can come up with a standardized system of electronic health records within five months," said Kanter.
Kanter's recipe for a long, healthy life is moderation in all things, a good diet and regular exercise.
"This book isn't just for senior citizens like me," he said. "Everyone is affected by illness or disease at some point in their life."