Groups of Passionate People Change the World . . . Join Me?

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Have you ever noticed the electricity and vibrant energy that abides on a university campus? I think it’s more than just the result of thousands of young people collected into one place. It’s the result of big ideas, of people discussing and debating issues they’re passionate about, of them envisioning the world as being different and better through collective action.

I have being going it alone in health policy for too long. This has been useful in some ways–blazing your own trail is the only way to discover new land. But without others on this trail with me who have different opinions, backgrounds, and skill sets, I am not challenged to learn as much or, more importantly, do as much.

I’ve been thinking about this lately because a group of my friends and friends’ friends from medical school recently reconvened (virtually) a discussion group they had from the Cleveland days. (Sorry I missed it guys!) There’s nothing quite like meeting up physically, and maybe one day I can live in a place dense enough with health policy folk to do that, but until then I think virtual is good enough.

So this is my request: If you or anyone you know is passionate about health policy and wants to start talking about it occasionally (maybe quarterly), I want to hear from you. I don’t care if you’re an old retired professor or a young student or just a normal person interested in this topic. As long as you bring passion and questions and an open mind, I want to hear from you. Email me directly at tjaychristensen@gmail.com. And even if you’re reading this 10 years after it’s published, I still want to hear from you.

I don’t know where those talks will lead, but this is how it starts.

Another Article Shows that Price Transparency Tools Don’t Work (Plus My Explanation Why)

I have a bunch of papers I’ve saved to read, and I think it’s time to start going through them.

This one is called Online Advertising Increased New Hampshire Residents’ Use of Provider Price Tool But Not Use of Lower-Price Providers. It’s in Health Affairs, 2021, and was written by Sunita Desai, Sonali Shambhu, and Ateev Mehrotra. I always look forward to reading studies that Dr. Mehrotra was involved in.

Based on the title, you can guess that this paper will be good to challenge my assertions that people can make value-sensitive decisions if they are given the right information. Let’s see what they found!

The background to this study is that price transparency efforts are “plagued by low consumer engagement.” Typically less than 15% of people actually use whatever price transparency tool (usually a website) was provided, and often the number is much lower. So the question is, are so few people using these price transparency tools because they don’t know they exist, or is it for some other reason? Possible other explanations the researchers provide include patients just plain not being interested in using the price transparency information, and patients wanting to use the information but being unable to for some reason.

To answer their question, the researchers launched a “large targeted online advertising campaign using Googe Ads to increase awareness of and engagement with New Hampshire’s price transparency website.” Then, if the ads drove awareness of/traffic to the price transparency website but the claims data still did not reveal any changes in how often patients select lower-price providers, they could conclude that awareness isn’t the main contributor to the ineffectiveness of price transparency websites.

They created ads for three specific services: emergency department visits, physical therapy services, and imaging services, all chosen because they’re generally shoppable (yes, that includes emergency department visits, because the authors acknowledge that a high percentage of ED visits would be more amenable to urgent care!) and because their cost is typically low enough that people will not meet their deductible by receiving the service, which means they’ll usually be paying out of pocket for some percentage of the service.

The ads took people straight to the NH HealthCost website, which uses as its source data actual negotiated prices between provider-insurer diads (oh, the magic of all-payer claims databases!) (gag clauses be damned), although it doesn’t plug a patient’s exact plan or year-to-date spending info into the website to give an exact out-of-pocket cost; the best it can offer is an “estimate of procedure cost” and it also gives a “precision of the cost estimate” (low or high).

After spending $39,000 on ads over the course of 6 months, the website traffic went up from 265 visits/week to 1,931 visits/week. People who clicked on the ads spent, on average, about 30 seconds on the site. I just tried going to the site myself, and 30 seconds is definitely not enough time to truly search for a procedure and use the results to choose a provider. But maybe they returned later and spent more time on the website, which is plausible since the non-ad-related visitors typically spent more time than that.

Voila, awareness can drive traffic to a price transparency website! They cannot exactly calculate what percent of all patients who used one of those three services during the study period visited the website, but best-case estimations are 77% of ED visits, 13% of imaging services, and 54% PT visits. The true numbers may be much lower. But still, it’s enough that you’d think there would at least be some measurable difference if going to the website impacted provider selection.

Nope. Not at all. When compared to other states (as a control group, using a difference-in-differences analysis), there was absolutely no measurable impact on provider selection.

Before reading this paper, I was a little surprised at the title. But now, having read the paper and checked out the website myself, I’m not surprised.

Think about it this way: Have you ever compared Amazon prices on your phone when shopping at a brick-and-mortar store? I think a lot of us do that. Americans seem to be very interested in saving money and getting the best value as often as we can. But if we’re at Walmart and the best we can get when we pull up Amazon on our phones is, “This item will cost approximately $10 less than what you’re seeing right now in Walmart, and the precision of this estimate is low. Also, we can’t say anything useful about the quality of this product since there are no helpful reviews.” How influential do you think that would be for people? It almost seems like the risks of ending up with a more-costly or lower-quality product are high enough that you might as well go for the sure and familiar thing right in front of your face. I suspect it is the same with provider decisions.

The investigators summarized this perfectly when they said, “Our findings emphasize that awareness of prices does not simply translate into price shopping and lower spending. There are numerous barriers to using price information. People might not know the details of their benefit design to infer their out-of-pocket expenses. Customized out-of-pocket spending estimates may be critical.”

Agreed. They nailed it. And another thing is critical: easy-to-understand and relevant quality information. I’ve still never seen a real-world research study that’s been able to give patients both exact out-of-pocket prices and relevant quality information side by side. Those two details, plus insurance plan designs that require patients to pay more if they choose a higher-priced provider, are all essential to actually impacting patient decisions about where they will receive care.

Think of these efforts to get patients to alter their provider decisions as a bridge. This bridge has to span a deep chasm 30 metres wide. If the bridge uses three piles, each supporting a 10-metre long deck, the only way to cross to the other side is by having all three of those decks in place at the same time. Even if you build two of the three decks, almost nobody is going to cross that bridge. Likewise, very few patients will risk choosing a different provider than the default one (the nearest one, the one their friend recommended, the one their doctor mentioned, the one they’ve gone to before, etc.) unless they have all three of those pieces in place.

So, this study is useful in showing that awareness can drive a lot more traffic to shopping tools. That’s an important insight. But it was not designed to be a test of how much giving patients all three decks of that bridge will impact their provider selections. I doubt I will ever see a significant change in provider selection as a result of a price transparency effort until patients have all three of those required pieces of information at the same time. Which makes me mourn all over again that CMS did not fund the study I designed for the Utah Department of Health. It would have been the first to build that bridge and then watch what happens to patients’ provider selection and prices and quality in the market.

“The Doctor Said I’m Crazy”

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This last week of work, I had a lot of patients with functional disorders, and it has motivated me to help more people in this world understand functional disorders and the people who experience them, which will probably be all of us at one time or another.

First, let’s start with my favourite thing: an exhaustive, mutually exclusive categorization.

I categorize all symptoms into three broad groups: organic, functional, and malingering.

Organic symptoms are caused by the body. For example, if you have a bowel obstruction and your stomach is super distended, that will trigger the nausea receptors in your GI tract, and you will have significant nausea.

Functional symptoms are caused by the mind. These symptoms are felt just as surely as organic symptoms are, it’s just their source is different. For example, if you have a major psychological stressor, it will activate nausea receptors in your cerebral cortex, and you will feel nausea just like if you had a bowel obstruction. The common symptoms of functional disorders that I see all the time are pain (anywhere, but often abdominal pain, chest pain, back pain, headaches), generalized symptoms (fatigue, weakness), psychological symptoms (brain fog, depression, anxiety), GI symptoms (nausea, diarrhea), and neurologic symptoms (altered sensation, focal weakness). Any of those symptoms could come from an organic source or a functional source.

Malingering is straight up lying. The person doesn’t have symptoms, they’re just making them up so they can get something. For example, if someone really likes the high some IV diphenhydramine plus promethazine can give them, they’ll say they have nausea and itching and that the oral versions of those meds don’t work.

I believe malingering is rare. But functional symptoms are very common.

Sometimes symptoms are a mix of organic and functional. And sometimes the symptoms started out as organic but perpetuate as functional.

Functional disorders are diagnoses of exclusion, meaning we have to exclude the other likely organic causes before we can give the diagnosis of a functional disorder. This is because we currently have no lab test or imaging modality that will be definitively diagnostic for a functional disorder. Sure, we can find objective things as a result of functional disorders; people will truly get diarrhea, which is pretty objectively identifiable. And people will get metabolic alkalosis if their functional nausea has been causing them to throw up all their body’s acid. But no test will be able to definitively identify the cause of that diarrhea or that nausea.

Because functional disorders are diagnoses of exclusion, patients will first get worked up for increasingly rare organic disorders until, eventually, the doctor determines that even though there’s still a small chance they’ve missed something organic, the likelihood of the patient’s symptoms being from an organic disorder is small enough that it’s no longer worth further testing, and they should instead proceed with trying to treat the functional disorder to see if that resolves the symptoms. This means that, sometimes, the diagnosis of a functional disorder will be wrong. That’s the nature of the statistics of diagnoses of exclusion.

When a doctor gives a functional diagnosis, they’ll usually say something like, “All of your tests came back negative; I think it’s being caused by stress. You need to see a psychiatrist or a therapist.” And what the patient hears is either, “I don’t believe you’re having nausea,” or, “I think you’re crazy.”

And what does the patient do next? They find another doctor. The workup starts all over again. Increasingly rare causes are tested for. The patient Googles their symptoms and finds all sorts of things online that lead them to request testing for rare disorders, which are often expensive and/or invasive.

Sometimes, if the second round of testing turns something up, they are even more convinced the first doctor was horrible. And they latch onto that diagnosis, even if there’s a good chance it was a false positive or only explains a part of their symptoms.

I try to avoid all of that by explaining to patients the three categories of disease and then being very clear about two things. First, that functional disorders are not malingering; I tell the patient I am absolutely not saying they are making up these symptoms. I tell them functional symptoms are felt just as truly as organic symptoms are felt. Second, I tell them that it’s normal for our minds and bodies to cope in any way they can with something, and often that means creating physical symptoms. And with that understanding that it’s caused by the mind, the treatment is to see a professional who can pull that stress/trauma/hurt out of their mind and help them process and resolve it. That is the only effective treatment for what they have, and it will resolve their symptoms after that core cause is treated.

The challenge is finding a professional who can accomplish that because there’s still so much we don’t understand about the mind and how to help people process those things. Finding the right one and the right treatment modality may take several tries. But it is possible to cure functional disorders!

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