Category Archives: patient centered healthcare

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.


A Year of Milestones: 2015

Maybe we all need the blind to read to us, especially if they are reading to us about us. (K reading to Scarlet from a book made about Scarlet)
Maybe we all need the blind to read to us, especially if they are reading to us about us. (K reading to Scarlet from a book made about Scarlet)

I have a habit of looking back at the end of a year and taking a moment to think about what was important in the year. Often things which seemed huge at the time seem much smaller with the gentle lapping of time’s waves. Other events which seem trivial loom large as their occurrence warns of an incoming avalanche.

With that said, here are my most salient memories of 2015. I turned 40, and I realized I have had MS symptoms for 10 years. Now just having MS for 10 years doesn’t seem like that big of a deal ten years into it. However, early on when I was dealing with head aches bad enough to make me pull over to the side of the road to puke or could not hold on to a soup cup for long enough to pay for it, my ability to still maintain a full time job and help my wife raise three medically fragile children would have seemed foolishly optimistic. So here I sit at 40 years old and having had ten years with MS, and I am planning to run the Yellowstone half marathon in June. It is my way to “rage against the dying of the light.”

When I think of big events of 2015 for me and my family, the events list start with the adoption of K. She has been with us so long, the formal adoption was almost taken for granted. She has been family almost her entire life, and we take it for granted at this point. Of course that is a sign of the truth of the statement in fact as well as in law that she is family.

For other family events, it is hard to come up with one bigger than the summer family reunion in Arkansas. For me, it is still amazing to see the family bonds strong enough to pull more than 75 people together from all over the world every five years. It feels like living in a story from the fifties because I don’t see or know of many of my friends still having big family reunions. It’s an invitation to be accepted into a family group larger than our nuclear family and close friends. For our kids, how great is it to get to know they are connected to so many people of different cultures who approach things differently? Still better, the family reunion was followed by a week with just uncles, aunts. grandparents and cousins. So their personal net of connections got cast out wide and then pulled back just a little to deepen the ties a bit closer on the family tree. The whole trip was a fascinating time to renew friendships and definitely one of my favorite highlights of the year.

Continuing on the family side, I was also lucky enough to chaperone each of my two oldest on their respective scout camping trips. It may seem silly to rate nights spent laying on the cold ground as highlights, but I enjoyed the time bonding with my kids and watching their interactions with their peers. I figure I am not that far away from a time when my kids will grow apart from me and not want me hanging around. After all, the “cool” dad role has a definite expiration date. So for the time being, I will enjoy the chance to tell stories around the camp fire and laugh as other kids are now old enough to know some of the myths I draw from to craft my stories.

Happy moment of found family 2015
Happy moment of found family 2015

On my work front, 2015 was rewarding, informative and depressing all at once. The project I manage lost 6 of it’s 4 employees during the most hectic part of the schedule before publication. No that is not a misprint or a mistake. We lost the replacements of 2 of the spots as well. When we published in September, there was another project manager and I along with two employees who began April 1st and 2nd. When I say rewarding, it is because we accomplished what most outside our group said could not be done for months leading up to publication. I was lucky to get good employees who quickly grasped what I was trying to teach and then were able to move forward. The depressing part was being given a rating of barely passable performance by new management who never understood what was involved in meeting our publication dates. So they praised us in public for accomplishing what most thought could not be done, and then in private they rated us as low as they could without having to justify the ratings. As a kicker, the other project manager was removed from our area in the weeks following publication. The upside is the rating has reenforced in my mind the need for cultivating an ability to appreciate accomplishments regardless of others’ opinions. I teach it to my kids, and this is just an example where I need to live what I teach.

Thankfully, if my job threatened to make me question my abilities to think critically to work towards a goal, my work with the American Board of Internal Medicine (ABIM) as patient’s advocate has been rewarding. It is fascinating for me to learn how they determine what a doctor should need to know after they have been practicing medicine for years. ABIM then gave me two great recognitions of my input. They extended my term of service on the board as my initial term was expiring, and they asked me to help them on another as they set up a conference promoting patient centered medicine. Not much makes me feel more appreciated than being asked to continue and then asked to do more.

Still, the highlight from a feeling of possibly having an impact on healthcare came when I was asked on a Wednesday afternoon in October if I would present at the FDA on the following Monday. The kicker was I had to have a presentation to them by Friday. Thankfully, the topic of the presentation was REMS: Understanding and Evaluating their Impact on the Health care Delivery System and Patient Access. It was an opportunity for me to talk about risk management from a patient’s perspective because I take a drug with a chance to leave me with a brain infection likely to cripple or kill me if I get it. Talking about numbers and what they mean is the type of conversation I frequently lead at work as we review data, and I had just written about our inability to really conceptualize large numbers. So I wrote up the presentation on Thursday night and gave a quick run through with my coworkers on Friday before submitting. On Monday, I gave my presentation and actually had some applause which shocked me. Having people come up to me for the remaining 2 days referring to me with “you’re the numbers guy right?” was a great shot in the arm. I was even contacted months later by another patient advocate who watched my testimony and was impressed enough to re-watch it before presenting to the FDA at the request of the MS Society. Giving that presentation was a high water mark for feeling my thoughts on our healthcare are respected even if I think they are often given more weight than they deserve.

My theme for this past good year could best be stated, “It feels good to be valued.”

There is a some times shy super hero inside us all. This is one of my favorite pictures from 2015.
There is a some times shy super hero inside us all. This is one of my favorite pictures from 2015.