Our History and Our Story

Finding appropriate medical care for our patients, friends and relatives has been a way of life for many years.   As a hospitalist practicing in a community hospital in Marin County, California, I frequently referred patients for specialized care to one of the several tertiary medical centers in the San Francisco Bay Area.   I would ask around to my friends and contacts until I got a name of a specialist.  It was not always easy and it was never very scientific.  And it was mostly done off-line because the information I needed just wasn’t available on the Internet.

But the frantic calls and emails come from a much wider network.  They are the friends, relatives, friends of relatives, relatives of friends and so on, who have been diagnosed with a rare or serious and life threatening condition.  Minutes, days and weeks go by while they try to research their condition, get a second opinion and get to the right treatment.

 Sometime in 2006,  I was asked who in San Francisco did a DIEP flap for breast reconstruction surgery.  I didn’t even know what it was at the time.  Around the same time my husband, Wade Smith, was asked to find a pediatric gastroenterologist for a friend’s child for a second opinion.  Wade is a neurologist- for adults.  I am an internist, an adult-only specialist, by definition.  What do we know about pediatrics, beyond what we’ve learned having our own kids?  At some point, I laughingly suggested that we should start keeping track of our research because other people could probably use it and isn’t it funny that in this day of information technology there is still nothing but word-of-mouth to go on?  And if it’s difficult for us, even with our insider knowledge and connections, to find relevant physicians for specific rare diseases or procedures, it must be extremely frustrating for other referring physicians and, especially, patients.

Word-of-mouth can be very important.  On-line word-of-mouth communications within communities like ACOR  have changed the experience entirely for patients with cancer.  And neurologic conditions are the focus of the on-line communities at PatientsLikeMe.  Patients and family members share stories, give each other advice and provide each other support and encouragement.  They empower each other to take control of their medical care.    ACOR founder and participatory medicine advocate, Gilles Frydman,  summarizes the situation of patients with rare and serious diseases well on this e-patients.net blog post .  The sad truth is that for reasons of pride or income, some physicians fail to refer patients when they should. 

So how does word-of-mouth do in the off-line world of patient referral?  Primary care physicians are likely to be familiar with one or two specialists per specialty, if any, at their nearest academic medical center.    So, guess who they send their patients to, regardless of  the problem?  Those same folks, regardless of their expertise.  It happens all the time to my husband.  Wade Smith, MD, PhD  is a highly specialized neurologist.  His expertise is in vascular neurology and neurocritical care.  Word-of-mouth referrals don’t usually include that information, however, and so he gets many calls from patients that would like to see him for their migraine headaches, neuropathy, Parkinson’s disease and so on.  They are often very disappointed when they are referred on to another specialist.

Academic medical centers, are typically connected to medical schools and operate teaching programs for physicians and other health professionals.  Most medical research is performed at academic medical centers and so most medical “firsts” occur in those institutions.  It should be no surprise that all of the US News & World Report Top Hospitals are academic medical centers.  At an academic medical center, almost everyone is an expert in something.  That’s why they’re there.  Even the primary care doctors have their niche special interests, usually the topic of their research.  They get to be experts by a combination of training, focused clinical experience and research.  Sure, Wade Smith might be a great neurologist, but is that really useful information for a patient with ALS (Lou Gehrig’s Disease)?  No, it is not.  It is irrelevant in fact. 

We decided to try to add some relevancy to the word-of-mouth process, whether it takes place on-line or off-line, between patients or between doctor and patient.  We believe that if a specialist at a top academic medical center has been trained in a specialty or subspecialty, has tailored their clinical experience in a specific area of concentration and published research around a rare or serious condition, then that makes them an expert.  That doesn’t make them the “best doctor” for every patient.  The doctor-patient relationship depends on a lot of things-communication style and expectations and more.  The best fit for one patient may not be the best fit for another. 

We concluded that what was needed was a searchable database that catalogued physicians by specialty, subspecialty, area of concentration and conditions and procedures of special expertise.   We recognize that specialist physicians at top academic medical centers don’t just “hang out a shingle” and call themselves experts.  They get narrower and narrower in their expertise as they move through their training, research and clinical experiences and eventually they arrive at their “apex”, the focus of their clinical practice and research.

In early 2007, using the National Library of Medicine’s Medical Subject Headings (MeSH) list of diseases as a starting point, we began creating a catalogue of over 8000 diseases and procedures and mapped all of them to relevant specialties and subspecialties. Along the way, we had assistance from nearly 20 other physician colleagues with expertise in various specialties. 

We propose to give patients and referring physicians a place to start when time is precious.  (And when is time not precious, really?)  In the information age there is no reason at all why a patient with pancreatic cancer shouldn’t be able to call up a list of gastrointestinal medical oncologists and surgical oncologists that specialize in pancreatic cancer at a medical center of interest. 

We are dedicated to improving the cumbersome and disorganized process by which patients with rare or serious conditions find or are referred to specialist physicians at top academic medical centers.  Check us out at ApexMD.com.  Whether you are a patient, a specialist at an academic center, a referring physician or a patient advocate- we are interested in your feedback.  Future posts will outline our plans for incorporating patient, physician and healthcare professional recommendations.

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