The Future of Specialty Care within Academic Medical Centers

Healthcare reform and a patient-centered realignment are going to transform the healthcare system.  How these forces affect the academic medical center, and particularly their specialty services, will depend on the ability of these institutions to adapt to the new environment and to take advantage of new opportunities.

Healthcare reform promises to control cost, at least in part, by more appropriate use of specialty services.  According to the recent White Paper from the Institute for Healthcare Improvement, Reducing Costs Through the Appropriate Use of Specialty Services, as much as 30% of healthcare costs could be saved by correcting the overuse of services without reducing quality. The President and CEO of the IHI is Don Berwick who was recently nominated by President Obama to run Medicare and Medicaid.  Presumably, he will move the plans outlined in this paper directly into demonstration projects.

So, how will this effect specialty care provided at academic medical centers?  That depends on whether the center is a low-cost or a high-cost provider.  In 2005, the Commonwealth Fund published a study entitled Variation in Use of Medicare Services Among Regions and Selected Academic Medical Centers: Is More Better?  This study compared the 77 institutions rated by U.S. News & World Report in 2001 as the nation’s “best” hospitals for treating geriatric care, heart disease, cancer, and pulmonary disease.  When they looked at utilization of resources and costs they found that, per-enrollee, Medicare spending varies almost threefold among hospital-referral regions and academic medical centers.  The high-cost centers had more physician visits, more hospitalization days, more ICU days, more diagnostic testing and imaging.  They even had significantly more patients die in ICUs. The IHI and others have shown that academic medical centers with greater spending rates do not, however, provide greater quality of care.

So, in the future, it will be very important for high-cost academic medical centers, such as those in Southern California and Manhattan that were the focus of this study, to bring their costs into line with the lower-cost, high-quality centers.  Their physicians, particularly their specialists, are doing too much, without benefitting patients.  This from the summary: “In the long run, the most challenging problem will be finding mechanisms to clear regional markets of excess capacity.” That will not be easy, but academic centers should lead the way rather than sit on the sidelines and bemoan the passing of the good ol’ days.

And the realignment of healthcare around the needs and preferences of the patient will also require adaptability on the part of super-specialiists and academic medical centers.  As industry stakeholders, academic medical centers must reassess their processes and priorities toward customization for patients.  As outlined in a recent Pricewaterhouse Coopers’ Report all providers will need to assume more accountability for the coordination of care and begin to use electronic tools to help patients make better decisions.  A patient-centered approach is inevitable, as Gary Belfield of the NHS in England put it, “In an integrated world, no one provider owns chronic disease care.  The patient owns the chronic disease.”

The Commonwealth Fund concluded that self-directed care has been quite successful in a report from February 2010 entitled International Developments in Self-Directed Care.  The move toward self-directed care will have to start with an interoperable electronic health record that will allow the patient to take a collaborative role.  A patient-centered medical record will allow for better coordination of care.  Patients with rare, serious and chronic diseases particularly want and need their primary care physicians, specialists, social workers, therapists and pharmacists to have the same information and to communicate with each other and with the them when necessary.

Remote care holds a lot of possibilities for patients and physicians.  Mobile, networked tools for care at a distance are available already and will continue to improve.  Monitoring devices, safety devices, virtual visits with physicians, therapists and social workers are available and utilization will only increase.  Recently, some US states have been requiring insurers to cover telemedicine.  There are some barriers, such as state licensing limitations, but those can be overcome.  The Veterans Administration (VA) already has an electronic health record and some remote device services.  Free devices are enabling some patients more frequent monitoring.  The VA is reporting a drop in hospital admissions and shorter hospital stays as a result.  And in France, a home monitoring system is being credited with a reduced number of hospital days by 2.7 million between 2005 and 2008.  US academic medical centers should be actively pursueing these mobile and remote services because they stand to benefit by telemedicine more than most other institutions, because of the brand recognition that they command.

And along these same lines, in a Pricewaterhouse Coopers’ survey of global health leaders, “almost half said they thought medical tourism would increase in the next five years. The medical tourism industry will split between those shopping for low-cost and those searching for new science and value.”  Half of global consumers with chronic illness interviewed said it was easy or very easy to understand their medical condition, but that it was much harder to access a specialist than a primary care physician. These global consumers chose access to care as the top attribute that defines quality care.  A global shortage of specialists could be met by US academic medical centers.  Developing countries are also in need of medical educators and researchers. Distance care, in the form of consultation or second opinion, distance research and distance teaching all offer great opportunities for US academic medical centers.

Academic medical centers have not been known for their flexibility and adaptability. The definition of Ivory Tower on Wikipedia is a place “where intellectuals engage in pursuits that are disconnected from the practical concerns of everyday life.”  Many patients with rare, serious and chronic diseases depend on the highly specialized services provided by academic medical centers.  For their sake, I hope the Ivory Tower gets “connected” to patients, literally.


What do I want from the Society for Participatory Medicine?


From my blog comment at What do YOU want from the Society for Participatory Medicine? by e-Patient Dave on February 26, 2010

I would like to see the SPM focus on the patient as “team leader”, with their advocates, their physicians, and other healthcare professionals as team members dedicated to better patient outcomes.

The team needs ways to easily and efficiently come together to review progress, treatment, alternatives, new evidence, etc., at appropriate intervals.

I would like to see SPM work on how to overcome the barriers to teamwork, how to prove that teamwork leads to better outcomes and provide guidance and tools to facilitate teamwork.

The informed and empowered patient is ready to embrace team leadership. But the less Internet savvy patients need to be reached out to and educated. They need to know that it’s not about mastering every new technology gadget, it’s about taking control of decisions and getting what they need.

And there are barriers to getting participation from physicians. As everybody knows, doctors can’t bill for phone calls. But most still make them, the good ones, anyway. And many communicate electronically with patients. What if it was faster, easier and more effective to communicate as part of a multidisciplinary conference? Certainly there are some doctors who will never join Health 2.0, out of inertia and/or lack of time and/or lack of reimbursement. But attitudes could be changed if the benefits could be demonstrated, in terms of outcomes, time and money.

Hospitalist physicians (those taking care of inpatients) are just now beginning to institute a multidisciplinary team approach to the care of hospitalized patients. From the February ACP Hospitalist, copyright © 2010 by the American College of Physicians  is this article discussing how daily meetings between physicians, nurses and social workers improves outcomes for patients and describes the implementation of procedures to improve communication on inpatient services in St. Louis, San Francisco and Philadelphia. These kinds of programs take the dedication of the team members and are just now being implemented in the inpatient setting in hospitals in this country.
My favorite quote: “Good Communication Doesn’t Just Happen”.

If doctors are just starting to meet with nurses and social workers in the inpatient setting, it can be no wonder that a team approach, including the patient, in the outpatient setting can seem far-fetched. But, it shouldn’t.

Participatory medicine may have developed because medical information became more available via the Internet, but participatory medicine should be more about changing attitudes than changing technologies. It should be about bringing patients, doctors, advocates and other healthcare professionals together for better patient outcomes. The SPM is perfectly positioned to educate these stakeholders, study various formats, tools and methods of collaboration and communication, and hopefully to prove that the participation of all these stakeholders leads to better patient outcomes.


ApexMD Launches the First Website To Allow Disease-Specific Search and Recommendations of Physicians for Rare Conditions and Specific Medical Procedures
December 14, 2009 — San Mateo, Calif. December 14, 2009 – ApexMD , a free search engine for finding and recommending specialist physicians, introduced today a sophisticated search and recommendation tool for finding physicians at top US medical centers. ApexMD is 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 in the US for diagnosis, treatment or second opinion.
The ApexMD search engine introduced today allows users to search for or recommend a physician using any one of over 22,000 disease or procedure terms. Visitors to the site can search for doctors at any one of the top ten US medical centers as determined annually by US News & World Report or at least one top medical center in each of 11 US geographical regions. Currently, ApexMD allows users to search for physicians practicing at: Barnes-Jewish Hospital, Brigham and Women’s Hospital, California Pacific Medical Center, Cleveland Clinic, Dana-Farber Cancer Institute, Duke University Medical Center, Fred Hutchinson Cancer Research Center, Johns Hopkins Medical Center, Massachusetts General Hospital, Mayo Clinic, MD Anderson Cancer Center, Memorial Sloan Kettering Hospital, Methodist Hospital, New York-Presbyterian Hospital, Ronald Reagan UCLA Medical Center, Stanford Hospital & Clinics, UCSF Medical Center, University of Colorado Hospital, University of Pennsylvania Medical Center, University of Washington Medical Center,
“ApexMD gives patients and referring physicians a place to start when time is precious.” said Dr. Janeen Smith, Co-founder and Chief Medical Officer of ApexMD. “Other physician directories and ratings websites do not have information detailed enough to be of any practical use to patients who have been diagnosed with rare diseases or serious medical conditions, such as cancer or disabling illness. ApexMD goes far beyond existing doctor directories and doctor ratings sites by providing detailed physician profiles, a sophisticated search algorithm and disease-specific recommendation for physicians. ApexMD offers patients, advocates and medical staff the opportunity to recommend specialists in the context of specific conditions and procedures. We believe this is a significant leap forward in medical search technology.”

Each physician profile at ApexMD has been built by physicians through a multi-step process that includes analysis of publicly available information on physician training and medical specialization. Each profile is then associated, to varying degrees, with hundreds or even thousands of diseases via the ApexMD proprietary medical algorithm. In addition, physicians can create a new profile or edit an existing profile by visiting and requesting login credentials.
About ApexMD: Visit for more information.

Specialist Physicians: Relevancy and Recommendation

We at ApexMD 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 for diagnosis, treatment or second opinion. 

This process can be a time-consuming obstacle to newly diagnosed patients.  Gilles Frydman, noted advocate of participatory medicine and founder of ACOR, described this challenge for patients, “ACOR members constantly ask about experts. We have happily taken 10s of thousands of cancer patients away from the hands of mediocre doctors who should have recused themselves, because of their understandable lack of knowledge about the medical condition they diagnosed, often with long delays.  And then we have helped these same patients find the real healing hands, the doctors who treat many patients with the same condition and have optimized their practice to provide high-quality across the continuum of care.”  This from a comment to Medical Justice’s approach is “repulsive” by e-Patient Dave on March 4, 2009 .

Empowered patients are taking this search into their own hands, but referring physicians, and other medical personnel, such as medical librarians and patient advocates, also struggle with this specialist search process every day on behalf of patients.

But as any cancer patient can tell you, the most specialized doctor is not neccesarily the “best doctor” for every patient. The doctor-patient relationship depends on a lot of things-communication style, expectations, both on the part of the patient and the physician, the involvement and training of support staff, the existence of a clinic or center dedicated to the specific condition, and so on.  The best fit for one patient may not be the best fit for another.  Those differences are the topic of the newest feature added to the ApexMD physician profile.  Now patients, medical personnel and other advocates are able to recommend specialists for specific conditions and procedures.  To learn more about the specialist recommendation feature, check out How do I make recommendations for specific doctors?

We believe that both relevancy and recommendation are important factors for patients and advocates to consider.  Just as the super-specialist may not have the personal skills to develop a therapeutic relationship with a patient, neither might a generalist have the knowledge and experience to develop the most effective treatment plan for a patient.

ApexMD  has profiled specialists at the top 10 medical centers as described by US News & World Report America’s Best Hospitals and at hospitals within each of 11 US regions.  Medical centers are being added at a rate of about one every 2 weeks.

Profiles of specialists at top medical centers are gleaned from public physician biographies and refined through physician editing.  For a detailed discussion of the profiling and the search algorithm, check out How Does it Work.

Current physician directories and ratings websites do not have information specific enough to be of any practical use to patients who have been diagnosed with rare diseases or serious medical conditions, such as cancer or disabling illness. Current doctor directories have little or no search capability. Current physician rating sites have comments but no context. 

ApexMD gives patients, advocates, referring physicians and other medical personnel a place to start when time is precious.

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 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  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.


Over the last few months we’ve focused on Bay Area medical centers. Over the next few months, we’re going to start adding medical centers from other regions. Stay tuned.

Making it easier to find the right doctor.

It’s 15 years since the ‘world wide web’ started to change our lives. Over the years since then, we’ve seen revolution after revolution. We can send messages to each other instantly; we can sell our used stuff to buyers all around the world; we can read reviews of everything from cars to toasters; so why is it still so difficult find a good doctor.

Not just your family doctor. Try figuring out where to go for a second opinion on a mastectomy operation, or finding the best onocologists to deal with a diagnosis of Renal Cell Carcinoma. Finding the right specialist is still a game where you must rely on the networking skills of your primary physician; where the information available to you is still largely obtained through word of mouth, and tidbits of information…. “I hear Dr so and so is good in this field…”

And it’s not just patients suffering this problem. Physicians regularly see patients with complications beyond the scope of their expertise, and beyond the scope of their network expertise. How do they find extra help? Well, it’s back to the phone.

ApexMD is the start of an attempt to solve this problem. It hasn’t been solved yet because the path is long, and the solution is not easy, but we are making progress. We think we now have the most accurate directory for finding specialist physicians in the Bay Area.

Try it out for yourself at