I have been reading a book that I highly recommend to readers of my blog.  It’s called The Creative Destruction of Medicine, by cardiologist Eric Topol.  This book is a discussion of the inevitability and utility of the convergence of the Internet, digitalization of humans, and genotyping.  It is about the resultant new science of individualized medical care, and the democratization of medicine. 

I have come to think that without radical, game-changing, paradigm-busting shifts in the center of gravity from doctors and hospitals to patients themselves, without empowering patients and democratizing care, and without moving away from a medical system powered by public health decisions awkwardly and inefficiently foisted onto private health decisions, we will:

1.  go broke  

and

2.  make no real progress towards curing chronic illnesses

Medicine has evolved in ways that no longer serve and which actually hinder progress. Pediatricians, members of my own branch of the guild, used to confine their advice to scarlet fever, broken bones, heart disease and similar.  Parenting advice came from grandparents, dietary advice reflected cultural norms.  Sometime in the fifties, however, parents became uncertain about parenting advice that did not come from their doctor and turned to medical providers for help with an increasing array of psychological issues for which doctors were — and are — poorly trained and constitutionally unsuited.  Issues such as co-sleeping, timing of solid foods, potty training, school adjustment all became the legitimate purview of newly trained doctors, even those who had not had the experience of parenthood themselves.  Health decisions were made by fiat from academic institutions (e.g. American Academy of Pediatrics) based on public health rather than private health considerations.  At the time, this was considered the top shot for medical advice.  The idea that the best decision for a given patient might not conform to the best decision for most other people was not entertained. And until the concept of genotyping came along, with the hope that each of us could be “fingerprinted” in a way that allows individualized medical decisions to be based on our own biology, decisions made on the basis of “evidence based treatments” was all we could hope for. 

But our ability today to examine a person’s entire genome changes everything.

Example:  Lipitor might have a strong evidence base for reducing bad cholesterol in studies of large numbers of patients.  But if you are one of those people whose genetic mutations mean that Lipitor causes inflammation of the muscles and may not help with your lipid profile, taking Lipitor on the basis of the “evidence” would be a mistake.  If I knew I carried this mutation I could make a decision about treatment that would benefit me personally, whether or not it benefitted the last 1000 people who took it.

Example: cancer drugs are very, very expensive.  They may only work in those patients whose tumor carries specific gene mutations.  To give them to people whose tumors do not carry these markers (or who do not themselves carry the specific markers) would lead to a HUGE waste of money, offer false hope, cause needless chemotherapy suffering and reduction in quality of life.   Genotyping could save lives, reduce suffering and SAVE MONEY to a system otherwise headed for bankruptcy.

What does all this have to do with children and adolescents with anorexia nervosa? Everything.

The web allows patients and their families informed, real time control over their health.  No matter how caring providers are, no one cares as desperately about a child as that child’s own parents.  No one cares as profoundly about a family’s ability to afford medication as that family itself.  We can advocate most meaningfully when we have the information and the access.  No one, not doctors, not lawyers, not the AMA, not the government, should limit our access to our own medical information including genetic information.  If we need help making sense of that information, that would be a meaningful role for providers. Important decisions of the future will be made collaboratively, because of the Web.

This blog raises a number of issues, nearly all of them controversial within the medical community.  What do you think?  What experience have you had?  Major genetic breakthroughs are on their way, even young children have access through the Web to a nearly indigestible amount of data and information, where do you stand on this?  One thing for sure, you are unlikely to be able to “ask your doctor”.