The Future of Medicine: What Patients Think is Missing

Photography by the author

Two speakers at the FutureMed 2013 Conference this November 2013 in San Diego, California have interesting messages for the audience.

One scientist felt doctors were not asking deep enough questions of their patients (like “Where have you lived?”) and another believed that, to a degree, the patients themselves could be more useful sometimes to each other than their doctors (if the patients are members of websites similar to “PatientsLikeMe”).

Seven years ago genotyping cost as much as the price of a castle; last year the cost of a small car; in two years will the cost be a slice of pizza?

Our environment makes us more vulnerable than physicians realize

Scientists who have mastered genome testing and brought the price down below $1,000 so that they, themselves, can afford to be tested are chagrined it hasn’t become mainstream.

Cancer is genetic, they say. Want to know if you could handle Coumadin? Think you might be mercury intolerant? Like to know what drugs might work or not work with your body? Get genotyped!

Some geneticists I’ve spoken to feel practicing physicians, because they don’t fully embrace genotyping they, are skeptical that environmental factors commonly impact health.

I remember reading Jonathan Harr’s book and, later, seeing the 1998 movie A Civil Action where John Travolta played the lawyer suing two powerful corporations when members of eight families in a Boston industrial suburb developed leukemia. I was skeptical, too. I remembered reading about the famous Niles, Ill. cluster when I was practicing in Texas in 1961, and I recall it provoked a book, too, where the author attempted to blame the polio vaccine for the cluster. So doctors had every right to be skeptical.

But maybe those environmental factors do impact those whose genes make them sensitive.

Even though some speakers were commenting on the high cost of medical care and this protocol costs an additional $1,000 per patient, there is a possibility that genotyping might ultimately give a better, less expensive health service.

Geo-medicine expert Bill Davenhall, senior health advisor at Esri presented a series of slides showing the geographical differences in the frequencies of diseases across America and his concern that physicians didn’t seem to share his belief that those statistics are important to individual patients. I can feel his angst, but I can also see the physician’s dilemma: the doctor in the trenches with the limited time insurance companies or employers allow for visits is already stretched thin to cover the patient’s existing needs without diving into the uncharted sea of environmental toxicity.

But Davenhall has been genotyped — as within a year or two will be all intellectual, academic and wealthy persons in the United States. He understands his body better than most people and recognizes what contaminated environments can do to his genetic weaknesses. He is chagrined that, when he gets a complete physical, the physician doesn’t ask him where he has lived.

His slide (top, below) talks about:

The GeoMedicine Lens

…Bringing Public Health & Personal Health Into Focus.

— My Place History

— Quality of Air, Water and Land

— Characteristics of Built Environment--Population Health (physical & mental)

— Social and Economic Status

— Clinical and Genetic Portfolio

= Where I live!

He asks, since those maps are widely available, why don’t physicians hang them in their offices so waiting patients can analyze them and comment when they see the doctor?

Social media have a lot to offer patients

The other scientist is a passionate young man: Jamie Heywood, the co-founder and chairman of a website PatientsLikeMe. The website was founded by three MIT engineers, two brothers to the late Stephen Heywood, who had been diagnosed with ALS five years, previously. Stephen’s brother, Jamie, has two themes in his presentation. One is his website, and the other is how difficult it was for him, a sophisticated engineer to follow and believe pharmaceutical companies’ graphs and conclusions about the benefits of some of their products.

Heywood confronts statistics, perplexed by Dartmouth’s map showing the variation across the United States of the incidence of hip replacement per 1,000 Medicare enrollees. Why is it all so different?

That some drug research is fraudulent is now known, even publicized. Jamie shows a slide quoting Maria Angell, MD, when she was the editor of The New England Journal of Medicine. She felt she could no longer believe the clinical research she’d published. Heywood also puts up several articles that discuss fraudulent research, including the one that really hit home from Atlantic magazine: “Lies, Damned Lies, and Medical Science.”

Jamie Heywood is still driven by the anguish of losing his brother to a terrible disease while he, Jamie, trying to help, foundered in a pharmacological morass of dishonest statistics. He is appalled, apparently, (and who can blame him? He is, after all, an engineer) at the lack of consistency in medicine.

“When you don’t know what’s going on, why don’t you start measuring what you do know?” he says.

But he is fulfilled by the success of his medical social website PatientsLikeMe and the comments he gets from patients who have demonstrated the resilience of the educated and engaged patient. Patients with seizure disorders can ask questions of informed patients who understand their symptoms and, thus, better-educated patients do have the statistics to show they cope better.

Patients, too, can discuss, for example, what helped their insomnia. I doubt experienced physicians would deny that an intelligent, educated patient with a single disease — and the time and inclination to explore it in detail — can end up as well informed as the doctor.

Eric Anderson is a retired MD living in San Diego. The one-time president of the NH Academy of Family Practice, he was a senior contributing editor at Physician’s Management for 10 years and a contributing editor to Geriatrics and to Medical Tribune at the same time. He has written five books, the last called The Man Who Cried Orange: Stories from a Doctor's Life.