This is the third post of a series on issues related to improving quality in medicine (so why is it named “Part 2”? Don’t ask… ). The two previous posts addressed a new proposal for reimbursement called pay-for-performance:
Last year, my trusty 1995 Acura Legend began to have baffling problems with intermittent overheating. After multiple trips to the shop for new hoses, a new water pump, radiator repair, new thermostat, and other fairly costly fixes–none of which resolved the problem–I decided it was time for a new car. I wanted to get a recent model coming off lease, and still on warranty, rather than a new vehicle. So I fired up my browser, and went shopping. I looked at the reliability of models in which I was interested, whether there had been any recalls, auto reviews, average gas mileage, and blue book prices. I browsed at several local car dealerships online, made a few calls, found a car, and did a Vehix search on its history. I then drove to a local dealership, and drove home with my new car a few hours later. The online investigation took less than 2 hours.
The last time I changed primary care physicians, I picked up the phone and called an internist friend of mine, and asked him whom he was seeing, then made an appointment with his doctor. The car will get me around town; the doctor may save my life.
Does anyone else think there’s something wrong with this picture?
As a physician, I have much more inside information than the average patient. When I need an orthopedist or surgeon, I can talk with the OR nurses who work with them day in and day out, and get a very good idea of their technical skills. I know many physicians personally, and have mutual patients, and therefore have a good feel for their intellectual wherewithal and interpersonal skills. But that’s about as far as I can get, and it’s still basically a crap shoot when picking a doctor. I know little or nothing about their complication rates, clinical skills, how current their medical expertise may be, how many malpractice suits they’ve had filed against them, the competence of their office staff.
And most patients looking for a doctor know far less about their choice than I. Why is this?
The answer is a lack of transparency.
Transparency is a term most often applied to the personal rather than the professional. It speaks to the wholeness of personal integration, the ideal state of being: what you see on the outside is what exists on the inside. Like a grand masquerade ball, we live life parading the beauty of our ball gowns and the cleverness of our costumes, while hiding our dark insides–our shame–behind exquisitely-crafted masks. Complete transparency is an unattainable goal–but when approached in some small measure, is one of the most liberating experiences in life. When we get honest about our own imperfections and shortcomings, and share them with others who recognize their own weakness and care for us despite ours, we begin to experience grace. The vast energies we have put forth maintaining our shields of deception can instead be diverted to addressing our own failings–often recognized for the first time–and giving of ourselves to others.
So what does this have to do with health care?
Professions by their very nature–requiring long training, utilizing a language unique to the craft, by their very nature embracing a highly specialized subset of knowledge not generally available to those outside the profession–tend to be somewhat closed and secretive. This is, by and large, not some nefarious plot to exclude the ignorant masses to preserve one’s power and wealth, but is rather a function of time, inertia, and the complexity of one’s field. It is far easier to do what you understand well, and have been highly trained to perform with little or no effort or forethought, than to explain your complex thought processes and instincts gained by years of experience to one without your training.
But the control of knowledge, given our human weakness, tends towards arrogance and defensiveness–as Paul of Tarsus observed many centuries ago: “Knowledge puffs up.” This is nowhere more evident than when, despite our knowledge, skill, and expertise, things do not turn out as expected. When challenged, we circle the wagons, employ defensiveness, rationalization, and self-justification. Whether or not the problem is self-engendered or the result of circumstances beyond our control, our natural instincts are to hide the ugly child, stuffing it in a closet while we move on, ignoring its cries, pretending all is well. And lest you think I’m singling out the medical profession, all professions–indeed all individuals in every walk of life–suffer from this tendency, to greater or lesser degree. You will find this process alive and well in the welder’s shop, at your car mechanic, at your bridge club and in your classroom. The problem in medicine is that the consequences of such cloaking behavior are potentially so great. If your bridge partner is lousy despite claiming otherwise, you will be angry and look foolish; if your car mechanic is not up to snuff, it may cost a lot of money and frustration, but is unlikely to otherwise harm you. If your doctor’s skills or knowledge are not up to par–whether he or she recognizes it or not–the impact on your life can be profound.
So how might this transparency thing make a difference?
Call me crazy, but here’s how it should work in my perfect world: When I need to see a surgeon, I go to the web, lookup his name, find his schooling, fellowships or other post-residency training, and how long he has been in his current practice. If I need my gallbladder removed, I can see statistics on how many he has performed, his incidence and type of intraoperative and postoperative complications; average, maximum, and minimum pain assessment levels at five days postoperatively; average length of stay in the hospital; and number of patients requiring re-operation. If I am looking for an internist to manage my hyperlipidemia, I can find out how many such patients he has managed, and how many have achieved their ideal lipid profiles, in what time frame, on which drugs. I want to see patient feedback on education about diet and lifestyle counseling, waiting times for appointments, waiting times in the waiting room, callbacks for lab results and questions. For my oncologist, I want to know her experience with my type of cancer, side effect incidence and profile for the chemotherapy administered, survival rate, pain management policies, availability of investigational protocols if needed, who’s on call when she’s gone or on the weekend.
As the patient, I find the thought of this kind of access to information exhilarating; as a physician, I find it highly problematic. It is not that I believe I would fare poorly by the release of such information — on the contrary, I am inclined to believe I would do well in most areas in contrast to my peers (which is no doubt my large ego at work). But I would fare poorly in other areas, which is an uncomfortable but necessary consequence of making this kind of information available. Oddly enough, this is not why the thought of such openness is frightening. The fear comes primarily from concerns about how the information is acquired, and how it will be used.
In the realm of the personal, transparency cannot take place without certain preconditions. First and foremost, one must be willing to be open and honest about both strengths and weaknesses–a vulnerability which can engender significant fear. This requires a willingness to admit one’s imperfections and shortcomings–which runs hard against both individual pride and denial, which are manifest in all of us. Secondly, the disclosure of potentially risky information about oneself must occur in a safe environment–the information must not be used against me, and must be protected from those who would so use it. And lastly, the point of such openness is the willingness to change–no point disclosing such information unless there is a desire to improve.
At the professional level in health care, the same conditions apply: willingness to disclose information openly and honestly, safe handling of information without retribution, and willingness to alter behavior based on such disclosure. There are significant problems with each of these preconditions for transparency in health care, however. Of the three, the elephant in the living room is the second: is there a safe way to release and distribute this information, so that it can be useful to patients (and to health care analysts and policymakers) without it coming back to bite hard at health care providers and institutions? I think the answer is a qualified “yes.” The willingness to release the information, and the ability to change behavior based on this information, will depend in large part on how the health information is handled.
Several criteria seem to me to be critical for the safe release and handling of detailed health statistics from providers:
- The information must be stripped of all patient-identifying information.
- The released health information must not be discoverable; i.e., it cannot be used in lawsuits against individuals or institutions.
- The information must be excluded from medical disciplinary processes.
- The information must be detached from decisions about reimbursement by third party payors and federal health programs.
- The information must be broad-based: ideally most or all providers in all specialties.
- Data comparisons of providers should be specialty-specific.
Physicians must also be able to comment on or amend this information. If my patient has surgical wound infection, but is diabetic and on prednisone, I need to be able to provide these details. Patient non-compliance, co-morbidities, or other circumstances determining treatment results are necessary details to flesh out the raw data about complications or other bad outcomes.
Without such safeguards, providers will be very reluctant to release such health care data. But there are other barriers to willingness as well. First and foremost, every physician reading this is asking, “Who’s going to generate and report this voluminous information?” The idea of massive reams of paperwork reporting clinical outcomes on most or all of their patients will drive a physician to early retirement, or the bottle–or both. This–along with concerns about who will access and use the data–will be the biggest hurdle to implementing any such system.
But it may be time for a reality check: pay-for-performance — a freight train already rumbling toward your medical practice — is going to require exactly this kind of information. And even if this payment scheme proves ineffective–as capitation, vertical integration, HMOs, and a host of other failed payment ideas have–once the data collection is in place, it will never go away. We should be thinking of how to do it correctly, so it benefits both our patients and our profession.
The use of an electronic medical record would greatly facilitate this data exchange. But EMRs have limited penetration in the health care arena–less than 15% of physicians use one. But recent decisions by Medicare to provide free, open-source EMR software to physicians–based on the robust system in use in the Veteran’s Administration hospitals and clinics, may well breach the dam of costs and vendor longevity which have proven impediments to widespread adoption of EMRs by physicians. Since this software is open-source, modules for the necessary data tracking and transmission could be developed with relative ease.
Who will manage and control this data? Government and insurance companies want this control, but here’s a better idea: rather than have a mandatory, government-run repository geared toward micromanaging health care, why not have a private organization or business manage the data, funded perhaps in part by government, but largely by subscription. Patients, health care researchers, media, third-party payers and government would subscribe to this service, with various levels of subscription fees based on the quantity and detail of information needed. These fees would support both data collection and IT costs, and allow physicians to be paid for providing the information, with contractual agreements allowing auditing to ensure that data provided by physicians was accurate and complete, and to discourage reporting fraud. Mandating that physicians provide detailed health information to government and insurers — while paying them less–will be as popular as a cellophane burqa in Mecca. Paying physicians to provide reliable information which will benefit their patients and their profession is a much more palatable and attractive concept.
Consider the benefits of having this quantity of health care data available. Most medical studies are performed using a few hundred, or at most a few thousand patients. Imagine the value of having access to the outcomes of millions of patients undergoing surgery, or management of heart disease, or cancer prevention. This is the power and potential of transparency. Will physicians and health care change as a result? I cannot imagine that the change would be anything less than tectonic. Competitive pressures will encourage physicians to improve their care. Large data sets will make it far easier to determine what works and what doesn’t, providing vastly more raw data than that currently provided by the medical literature–and without the potential conflicts of interest from pharmaceutical or medical device company sponsorship of such studies.
Anyway, that’s my dream. Like Samuel Coleridge, perhaps I have taken one too many puffs on my opium pipe, and shall awake to find this wishful thinking and fanciful visions. But before we can change, we must first begin to dream. We as health care providers can watch our patients search the web — where fruitcake herbal cures and quackery have equal voice with legitimate health care — and we can continue to base our treatment decisions on limited information — or we can begin to provide extensive health information ourselves, to improve our care and that of our patients.
Seems like an easy choice to me.