Please forgive me for a moment; I’m going to brag a little! I, Alan Kristopher Brewington, went to a Design in Health class at the Stanford University and gave a 5 minute patient ignite talk (http://medicinex.stanford.edu/portfolio-posts/advocating-for-patient-centric-design/). That definitely counts as an intense, but enjoyable new experience that until 2 months ago I would have never thought to be a possibility. This time the bumper stickers are right, life is a wild adventure for sure.
All right, no more bragging… for now. The title for the Design in Health class was Advocating for Patient-Centric Design. As a chronic patient I’m all for anything that puts patients first. We need more patient-centered, participatory medicine in this country. My own experience as a patient has taught me that there is countless kind and caring professional individuals in healthcare but as a system, it is incredibly bloated and only cares about shareholder profits. Much of my success as a patient comes from pure luck, which isn’t right. No patient, regardless of resources or means, should have to rely on luck in order to receive quality care. Quality of life should be the measure of any successful system, not profits in my opinion.
The easy part is critiquing though, especially being a chronic pain patient. I’m tired of hurting! However, part of being a Stanford Medx Scholar epatient is coming up with possible solutions. Answering questions from Nick Dawson (@nickdawson) like, “What is the ideal delivery system 5 years from now?” or “What does the ideal look like for me?” is much more valuable to the conversation than just critiquing. With that in mind, here is my attempt at starting a conversation that might help us achieve a more patient-centered, participatory medicine healthcare delivery system in this country.
Our healthcare system was initially designed to be paternalistic. Doctors went to school longer than any of us in order to gain all the knowledge about medicine possible. With this vast knowledge base, part of a doctors’ job was to take away the stress and worry that comes from being sick. In other words, a patient’s doctor almost became a third parent in many respects.
A perfect example of this paternalistic thinking is the iconic image of the friendly neighborhood doc making house calls. The happy doctor with a stethoscope around their neck and black bag with an endless supply of tongue suppressors treating patients in their homes was a great concept. They provided patients with personalized care along with unparalleled convenience.
As we all know, all good things must end. Gone are the days of personalized care from a neighborhood doctor. Our healthcare system is still based on the original paternalistic concept but insurance companies and a profit motive now drive the concept. Fortunately for patients, places like Stanford University and some talented innovators have come up with a patient-centered, fully participatory medicine philosophy.
A patient-centered, fully participatory medicine philosophy revolves around the idea of all parties that are involved in healthcare (doctors, patients, business, insurance companies, etc) working together towards better care for patients. The pure genius of this philosophy is that it puts all players on more of an even playing field and rewards better care for patients. More importantly, it provides a patient with a more cost effective medical experience without cutting corners that seems to be happening to often in today’s healthcare system.
At this point in the conversation I’m sure some of you want some examples. My first example would be exposing medical students to patients early and often while they are in school. The patient experience should be part of any medical schools curriculum and not something doctors begin to learn about while practicing medicine. Secondly, patients should have more input into current and future research. In fact, I would argue that patients should be the sole voice that drives all research but I would settle for patients on panels or boards that award grants. Once again, the patient experience would be an invaluable resource to any researcher and their project I believe. Another example I have of a patient-centered, fully participatory medicine delivery system would be including patients on all healthcare design teams. A patient expertise would not only add to the knowledge base of any design team but it would also be a contributing factor to quality innovation. The final example of patient-centered medicine would be doctors that do not wear watches while seeing patients (my first rheumatologist never wore a watch). Patient care, not time management would then become the focus of every appointment.
We also need to have a philosophical conversation about how we define care in the free market. This will obviously be controversial.
Many, if not a great majority of our country supports the idea of free market capitalism. I count myself as one of those supporters. My MacBook Pro, Giant road bike, Samsung T.V, and Ralf Lauren clothes are all very fine products that would not exist without the free market. However, these are all products that I wanted, not needed in order to live and function without pain.
“Needed in order to live” is the key distinction on why I don’t think healthcare or patient care should be considered a commodity in a free market. Let me explain. Consider the idea of preventive or wellness medicine. Chronic patients understand the importance of getting regularly checked out in order to prevent further problems. Conversely, a healthy 32 year old that runs 15 miles a week and eats almost entirely organic doesn’t think they need regular check ups. Our free market healthcare mentality has taught the 32 year old that since they feel great they should spend money on fun commodities like laptops or bikes instead of getting a preventive check up from their primary care doctor. The free market is dictating that a want is more important than a need in order to receive better care.
Simply put, I’m one lucky patient so far. My luck started as a newborn because I had parents with enough resources to send me to the hospital along with weekly visits to my pediatrician when there was a concern that I might have water on my brain. This luck continued growing up with successful battles against spinal meningitis, pneumonia and a urinary track infection while in high school, and countless trips to the E.R. for stitches or x-rays. As an adult, I have fired 2 rheumatologists and refuse to ever see a local neurologist again but otherwise my luck has continued with the doctors and nurses that I’ve had access too.
Statistics suggest that sooner than later my luck is going to run out. Luck should never play a factor in any healthcare system though! No patient should have to rely on luck in order to find an engaged doctor. More importantly, no child should have to worry about its parent’s income level in order to receive quality care. Quality of life and equal access to care should be the measure of success with any healthcare system, not shareholder profits.
In order to eliminate luck from our healthcare system we need to have a serious conversation about what we want the underlying philosophy of our healthcare system to be. Do we want to change to a more patient-centered, participatory medicine delivery system or remain with the current paternalistic healthcare delivery system? Also, is healthcare a basic human right that everyone should have access too regardless of income or employment status or should the rich receive better care than the poor simply because of the size of their checkbook? Without a serious conversation about what we want the fundamentals of our healthcare system to be no prescription for improvement will ever amount to more than a band aide fix. Like a house, no system can be successful without sound fundamentals underneath it.
As a patient, I know that I’m extremely biased. I believe that we need a patient-centered participatory medicine delivery system that gives everyone access to quality care, regardless of income level. We need a system that places more emphasis on quality of life issues rather than shareholder profits. Once these fundamentals are in place then I think neighborhood healthcare centers that can handle everything from the common cold, broken ankles, to bad cases of pneumonia for example (basically centers that could treat my life 🙂 ) would be an excellent start at changing our current delivery system. Lets get doctors into neighborhoods and communities so E.R.’s don’t have to handle these types of cases anymore. These community-based clinics could also provide free wellness care to anyone that wants it. I certainly know that a $50.00 increase in my own property taxes would not change my current standard of living so maybe this could be a way to pay for these localized clinics. Also, I recently read that if companies can get 5% of their employees to participate in a work based wellness program that is considered a success. Maybe these resources could be better spent on a community-based healthcare delivery system?
I also think a patient-centered participatory medicine delivery system would benefit from having at least one teaching hospital in every state. By having at least one teaching hospital in each state a medical student could intern at home in order to finish their education. This would increase the likelihood of Idaho students wanting to practice in Idaho once they are done with school for example. These teaching hospitals should also have actual patients on their boards and involved in evaluating the student doctors. A patient’s input would be invaluable in shaping the doctors of the future.
Patients should also be involved in the classroom and education of young doctors. Getting a patient perspective early and often would only increase a student doctor’s empathy towards patients. To often patients thoughts or ideas on care are not taken seriously because of our paternalistic delivery system. An active and engaged patient increases the chances of raising their quality of life and saves money; this should never be discouraged.
Finally, patients should have a more active role in research and design projects. Patients should be on all boards that reward grants or funding for research projects. Researchers and academics should include patients in their continued quest to learn and discover. All design teams should have a patients voice on their team from development to implementation into the healthcare system.
I, as a patient, might not understand all the medicine in the world, but I’m the only true expert on what is going on with my body. This allows me to offer a unique perspective to any healthcare delivery system that no researcher or design team could have without my input. After all, participatory means all parties should have an active role, not just some of the parties.