Category Archives: healthcare information

Death of Expertise and the Birth of Alternative Facts

O's fact: "This is a cool pig's head." A's alternative fact: "This is disgusting!" My fact: "Looks like the pig is done, and we are eating well tonight!"
O’s fact: “This is a cool pig’s head.”
A’s alternative fact: “This is disgusting!”
My fact: “Looks like the pig is done, and we are eating well tonight!”

I was recently pointed to an essay on the perception that our country faces a “Death of Expertise.”. The scary part is the article was written in 2014. As we now seem to live in a world of facts and alternate facts, I am becoming more and more aware how limited our perceptions are when it comes to our ability to discern actual reality. The lines blur, and worse the titles we use to convey a sense of expertise are often cheapened by those who benefit from “alternative facts.”

As a patient advisor to the American Board of Internal Medicine, I find this article on the Death of Expertise relevant as we begin to embrace patient centered care. We are looking at the impacts of the patient becoming a partner in their healthcare rather than a subject upon whom the art of medicine is employed to better their health. It’s interesting to me because I find myself frequently commenting to the doctors there is no way most patients know enough to really understand the impacts of a treatment on their health as a whole. We know what we experience, and we tend to assume what did not happen could/would never have happened to us. Many have little or no understanding of likelihoods, especially rare ones. Our minds are not primed to understand such information. As a result, preventative care can be a very hard sell, and it takes only a little bit of fear mongering to send us down an anti-vaccination route.

Of course, our body is a complex system (note: different from a complicated system that it also is). We are still learning the down stream implications of many of the things we do to and with our bodies. I recently gave a presentation to doctors, insurers, regulators and patients on patient generated data and how we can use it. It is “big data,” a term very few understand. Big data is simply data collected from many sources, collected for different purposes and then used as if one data set. We can use it to assert a position or confirm a position, and we are already doing both. We are just in the infancy of understanding how best to use the huge trove of information, and one of the challenges is pulling in most uninformed perspectives into something useful.

The ability to gleam and present such insights is where I predict the next generation of experts will arrive. The best of them will be able to sift out the trash to present and stay current with the overall trends. The hard part is recognizing the limits of our knowledge. The Dunning-Kruger effect is real, and ironically one mentioned at the last board meeting. When it comes to medicine, we have the added frustration coming from double complex system issues around both the complex system that is our health and the overlapping yet distinctly separate complex system that is our emotions about our health and healthcare.

Still, we are coming a long way at a fast pace. As our traditional study based medicine is either directed or confirmed by huge amounts of data, our knowledge is refined faster than ever. Heck at the last meeting, the doctors were talking about the study in Stroke showing an increase in strokes and dementia for people who drink one or more diet soda a day. It was mind breaking to them, and they were shocked by my only mild surprise. I told them I stopped drinking coke zero because my headaches were worse, and when I switched back to regular coke I looked at other patients’ info. I was far from alone across neurological conditions to note worsening symptoms on diet sodas. As a result, I was less surprised than they at a link between diet sodas and neurological issues. My knowledge was not based on a formal study, and I would never present it as fact. However, a smarter person could have made the connection and presented a decent level of proof from expanding the small amount of research I did, and they could present something I would believe as much as my doctor telling me. However, I need the doctor to tell me which of the millions of “facts” and “alternative facts” available to me are most likely to help me feel better and live the life I want to live better. Alas, I do not have the base to make such distinctions well.

That is why I need a doctor. What’s more, that is why I need the term doctor to convey a level of current expertise. It is why I endorse the idea of a body of “experts” who can set a minimum bar to be called an expert in their field. Note that is what the American Board of Internal Medicine is. It is a group of doctors (experts) who say to be accredited with them, a doctor must know X.


We Need a Champion We Can Trust

Some days I am amazed at all of the help we have gotten with A through the years.
Some days I am amazed at all of the help we have gotten with A through the years.

In the past two weeks, I have sat through a class on building trust with an organization and a round table discussion between the president of the American Board of Internal Medicine and a broad cross section of patient, consumer and purchaser organizations . At first, I did not link the two topics in my head until somebody at the round table described what patients want from their doctors as “someone who will champion me and my needs.”

When I heard this, I thought it summed up why I thought so highly of my favorite doctors. Of course, I want them to know all of the latest best practices, but as a patient I have little means to ascertain whether I am getting good or bad service in terms of medical quality. What I really need is somebody whom I can trust to do the multitude of little things to make me buy in to a plan of action to improve my health. Nothing builds trust faster with me than knowing the doctor will see my needs met, even when I know I am imposing a huge burden, sometimes bigger than I feel comfortable requesting.

When I think of doctors for whom I have the highest regard, I think of our children’s primary care doctor. Early in our fostering, my wife took our oldest to see her. Not only did she read through the medical history (2 big, full binders), she asked probing questions, followed up with requests for medications, gave needed referrals, and finally she filled out a huge application with a long letter detailing A’s medical history in an effort to get A into REM. REM is a program for rare and expensive case management. That A was ultimately denied did not matter. Her effort identified her as a champion, as somebody who had our kid’s interest in mind. As she has run for public office in recent years, it’s with a heavy heart we always vote for her. We vote for her because she is a champion, but we cringe at the thought of losing her energy and time as a doctor. She is one of the people I think of when I think of a quote from Andrew Bridge in Hope’s Boy,

“Some people are born for battles. Their bravery endures, regardless of frailty or strength. They are the ones we look to and our admiring hearts tell us, ‘They’ll know what to do.’ They are the great winners and losers of history. We remember them less for their outcomes than for their glorious acts. And, with the gentle wash of time, they become our heroes.”

When I think about my neurologists whom I have trusted, I think about why I trusted them. I trusted them because I felt my experience mattered to them. I felt as if they listened rather than heard what I said. They answered my questions and coaxed out what I valued in my treatments and life. I was and am willing to risk greater harm in order to preserve my abilities and life today. The best doctors have listened and have been responsive when I asked for help, and in turn I try not to ask often (a point of contention between me and my wife who thinks I need to ask more).

As I reflect back on the trust class and ABIM’s goal of requiring certified doctors to look at their own practices with a critical eye towards improving patient care, I come back to the comment from the round table. We patients want our doctors to champion our healthcare with us. In order for a patient to feel this bond, we have to feel trust.

I will readily admit much of healthcare today is set against the formation of this trust. Doctors have very limited time with each patient. The paperwork and administrative functions they and their staff are called to do by government, insurance and other organizations seems daunting. As a patient, all I can say is I am asking for a champion and a champion’s time/attention. I know I ask for a lot, always have. I just try not to ask often.

When thinking about how I would want the medical profession to change and how we as patients could measure a doctor’s trustworthiness which includes both intent and ability, I realized there are a few things I need to feel my doctor knows to do and how. I want them to know not only what treatments I may need, but how to chose amongst options and how to obtain needed treatments. The best have been ones who know how to make this easiest for me in terms of money and time, like the doctor who suggested I contact the pharmaceutical company for copay assistance. I want doctors to know how to be approachable. For some this comes easy, but I have certainly seen those for whom it is hard. I want a medical profession where criticism is seen as opportunity for improvement and thus constantly sought at all levels. The openness to being eternal students is critical. We can all improve

There is a kid’s riddle, “What do you call the person who graduated last in their class at Medical school?” The answer is, of course, “doctor.” In my ideal world, the follow-up question would be what do you call them and all the others who graduated ahead of them?” The answer should be just as obvious, “students.”