It is always interesting how events find ways of connecting themselves together even when they seem so unrelated.
I was at my sister Alexis’ graduation from law school on Friday, where I had gone directly from leaving a several day event organized by Health Evolution Partners. At the event I had occasion to meet with Dr. Charlotte Yeh, Chief Medical Officer of AARP, who will shortly be participating in a very cool panel at the conference I am chairing, the Consumer Health & Wellness Innovation Summit, on June 11 in San Francisco.
Anyway, Charlotte and I had been talking about the substance of the panel we will be doing together and I was telling her that what I want most from it is the true voice of the consumer. I told her that I go to too many conferences where we all talk about consumers but no one actually speaks from that point of view. That is why I wanted her, John Santa from Consumer Reports and consumer advocate and Director of the Institute for Sexual Medicine, Kim Whittemore, to be there to represent. “Can you imagine?” I said, “Actual consumers talking about consumers at a consumer health conference? Go figure. It will be a nice refreshing change from everyone else in the healthcare system talking about how consumers feel about changes in the healthcare system.”
So the next day when I was sitting at the graduation ceremony, having left the healthcare world behind for a day, or so I thought, I was pulled right back to the consumer health topic by one of the graduation speaker’s allegories. He told a story adapted from the essay called "The Star Thrower" (or "starfish story") written by Loren Eiseley. As I sat there listening, the story gave me a total epiphany about how to describe the difference in views between how the healthcare “system” talks about consumers (aka patients), and how consumers themselves actually feel when trying to get taken care of within the healthcare system. Here is a somewhat updated version of the excerpt from “The Star Thrower” that reflects the story told at the graduation (the original version has two men in it and is somewhat less hopeful, but this version has become the "go to" storytellers' friend):
An old man had a habit of early morning walks on the beach. One day, after a storm, he saw a human figure in the distance moving like a dancer. As he came closer he saw that it was a young woman and she was not dancing but was reaching down to the sand, picking up a starfish and very gently throwing them into the ocean.
"Young lady," he asked, "Why are you throwing starfish into the ocean?"
"The sun is up, and the tide is going out, and if I do not throw them in they will die."
"But young lady, do you not realize that there are miles and miles of beach and starfish all along it? You cannot possibly make a difference."
The young woman listened politely, paused and then bent down, picked up another starfish and threw it into the sea, past the breaking waves,
saying, "It made a difference for that one."
Wow, that says it all, right? We healthcare people talk in categories and trends. We talk about how all consumers should be treated and how we will deliver products and services for the masses. We design systems that are supposed to work for all, or at least most, and we talk about the few for whom those systems won’t work as the exceptions. But in reality, consumers (and I know this because at times I am one, just as we all are) don’t think of engagement with the healthcare system at all. Consumers are there to get their own singular needs met and could not really care less about whether they are the masses or the exception, only that they get good care and have their voice heard and feel better after the experience.
I think the main reason these two stories—"The Star Thrower" and the consumer experience—connected for me was because of the stories that Charlotte and I were sharing as we sat on the cliff overlooking the beach at Laguna Niguel (rough duty…not). We were sharing stories of “one off” consumer experiences that defied the “norms” but which clearly typified my point above.
I told Charlotte a story that had been relayed to me years ago by Dr. Rick Chung, who used to be the Chief Medical Officer at the behavioral health company I worked at before Psilos. In that true story, a seriously mentally ill patient who lived at home kept calling into our clinical office acting erratic because he thought there were bugs crawling all over his house. “Yeah,” said the clinicians in our office thinking as health systems people, “Poor guy is schizophrenic and must be off his meds. Let’s counsel him on compliance and the importance of a regular schedule.” And so it went for a few weeks, patient freaking out, care managers trying to remotely advise, costs of engagement rising, until finally someone from the office said they would go see him in person and determine if he needed to be hospitalized to be stabilized. And you know what they found? Someone who happened to be schizophrenic but whose house was actually crawling with bugs. The poor guy didn’t need a psychiatric admission, he needed a damn exterminator. And once the bugs were gone he was pretty much just fine; still schizophrenic, sure, but stable and doing his normal thing and not needing any expensive services.
Charlotte responded in kind by telling me a story of a 93-year-old woman she had heard about recently who lived in an apartment where much construction was going on next door. While old and frail, the woman was mentally quite stable but suddenly started having terrible paranoia at night and started forgetting where she was. Despite having 24-hour attendants at home, her situation was such that she was hospitalized, medicated and the sundowning (a syndrome of confusion that dementia patients often experience in the evening hours) actually got worse; many resources were expended trying to figure out what was wrong. Charlotte was explaining that one of the most important things for patients like this is having familiar, unchanging surroundings. It took a non-medical person to figure out that the reason the whole episode started wasn’t because dementia was increasing, but because someone had removed the photos that had graced her bedroom walls for years such that they wouldn’t fall down as a result of the construction hammering going on next door. When she was going to bed she was getting confused about her surroundings and thus exhibiting the dementia-like symptoms that had previously not been present. When the pictures were returned to the wall, the patient was well again, as if nothing ever happened.
It is very true that setting up healthcare systems of any kind requires a certain amount of standardization. The manner in which medical personnel screen patients and the system receives them has to have some regimentation or there would be chaos and even higher costs, and, for the most part, it works pretty well much of the time. But like the starfish in Eiseley’s story, looking at the healthcare system from a population-based approach isn’t really good enough for the individual patient consumer. We have to figure out ways to balance resource management to serve the maximum number of people well with individual attention so we don’t miss an individual starfish we could have saved.
As our healthcare system now takes a sharp right turn towards consumer-engagement and the purveyors of products and services figure out that the patients are now their customers (not just the doctors, the hospital administrators, the employer benefit managers, etc), this balance is going to be a hard one to achieve, particularly at the beginning. For instance, to set up a health insurance exchange for individuals to purchase insurance directly, we must establish basic processes and products that fit the most people and serve the lowest common denominator. I fear for the wave of patient horror stories that will emerge early from this process because expediency is often the enemy of personalization, and yet we need both.
As our healthcare system goes through massive transformation from the insurance system to the delivery system to the system of shared accountability with consumers that is emerging, it is going to be an incredible challenge to establish systems that don’t let the starfish slip through the cracks. There will be an even greater need for a cadre of consumer ombudsmen who will look for those who need to be picked up off the beach for special attention when the population-based rules don’t apply. I am sure it will be an iterative process.
It is worth noting that, according to the all-knowing, all-seeing Wikipedia, Eiseley’s Starfish story has been edited and revised many times as people have used it to tell their organizations’ stories. In 2003 it was adapted by an African children’s AIDS organization to tell a more hopeful story; their new ending goes like this:
The old man looked at the young woman inquisitively and thought about what she had done. Inspired, he joined her in throwing starfish back into the sea. Soon others joined, and all the starfish were saved.