The patient-centric healthcare experience I want

Having been ordered to rest, this is the perfect time to grab the laptop and lay out the experience I would have liked in my most recent encounter with the healthcare system; this time, and every time. I see no earthly reason why we can’t have this … entrepreneurs, please build it! I’ll be your first customer.

There are three parts to this experience:

1. my personal life log,
2. data-based problem solving with my healthcare provider(s), and
3. VRM-style purchase of products and services.

Let’s discuss them in turn.

1. My ideal healthcare experience all starts with my personal life log, which would be a (dramatically?) extended version of this blog. In this life log, I would like to log just about everything that happens in my life. It combines non-healthcare stuff like this:

• my public blog posts, for posts like this one;
• my private diary, to remember the good and the bad times, and to reflect;
• my on-line interactions with my friends and colleages, POSSE-style synchronized with Facebook, Twitter, etc. and perhaps e-mail;
• a log of all my locations and events (GPS, annotated with calendar events) etc.
• all the pictures I take, chronologically, and all the media that has been shared with me, and so forth;

combined with wellness-related items like this:

• my calorie / food log;
• my sleep and movements (Fitbit, Apple Watch etc.);
• my exercise log;
• my weight log (from my WiFi scale) and blood pressure if available;
• perhaps a log of leisure activities — like the time I spend reading fiction;

and combined, in particular for this post, with everything related to my health as it happens, such as:

• a time-stamped note: “I’m feeling crappy this morning”, or “never felt better in my life”;
• I took 400mg of Ibuprofen for headache (one-time);
• I took my blood pressure pills (as I should every day — actually personally I don’t need to, just an example);
• my nose feels itchy, maybe a cold is coming on, etc.
• “I wonder what I ate, my stomach seems unhappy with me”
• just bumped my toe.

Of course I also log:

• “doctor’s visit for my annual physical”; had this blood pressure, weight etc.
• blood test results came back, cholesterol was such-and-such (high).

Ideally, much of that logging would be automatic, by pulling in things like Fitbit feeds, or lab results from my provider’s website, but the overall scheme works even today when much of it would require manual entry.

Manual entry isn’t as much of an issue as it might seem: many people do that anyway these days except that they post “Feeling down today, somebody tell me a joke” to Facebook only, where only their friends see it, once. We might as well keep that data around in a place we own so it can be used for health purposes, and many others, as well.

There is much to say about the software and hosting requirements for such a life log, here are some of the most salient requirements:

• the life log must be able to stay around for long time, ideally for birth to death, say 100 years;
• during that time, it should not lose data, nor be interfered with the many different business strategies, fads, and economic and political circumstances that are going to change dramatically over such a long time span;
• the life log needs to “understand” as much of the data that’s posted as can be done. For example, it needs to be able to show me a timeline of all the Ibuprofen doses I have taken over the past 10 years. So it needs to understand “Ibuprofen”, “is-a-kind-of medicine”, “200mg” etc. all while keeping the user interface really simple. This is a technical challenge, but as Google search and Siri show, not unsurmountable.

2. Let’s say some medical condition develops, as a result of which I decide that I should consult with a health professional, like it happened to me recently. Let’s assume I already have a primary care physician that I like, so I go to him first.

Today, it looks like this: I make an appoinment with my doctor, and in the first 10 minutes of my visit I frantically attempt to remember and convey all pertinent information that might relate to my problem, and present it in a way that he gets the picture. I have found this really hard: it’s like giving a lightening talk at a conference, but without knowing what my central point is. That’s why I’m there, I want the doctor to tell me what my central point aka diagnosis is! The time line is really hard, because I usually don’t remember when I noticed that something wasn’t quite right. Based on that very incomplete information, worsened by my imperfect presentation, the doctor recommends something (a prescription, or something to do, like getting an X-ray), I leave, and communication largely breaks down until I come to a follow-up appoinment. Not good. And how can know whether my doctor even has any expertise in whatever ails me? (I say that as somebody who has been misdiagnosed more than once; like most recently!)

If I have a life log as described above, on the other hand, I basically create a permalink to the post on my log that has my observation about what’s wrong, and send it to my doctor. The doctor visits my log, and pokes around some: what happened before in my life, what came next? Has he ever had anything like that? Did he do an unusual amount of exercise in the week before? Or has he ever had something else that might be correlated? And then suggests certain next steps: “come see me, I need to listen to your breathing” or “take two aspirin, go to bed and update your log in the morning” or …

There are of course some access control issues around this — only the doctor gets to poke around my private log, or a certain part of my log, not the general public, but again those can be solved, in particular if the log understands the different kinds of information posted there.

From this point on, the doctor and I collaborate, in the context of the evolving life log and the growing amount of data there. He might say “let’s try an elimination diet“, and track my progress as I log what I eat. We might try different meds, or exercises, or whatever, and collaboratively determine, in real-time, what works and what does not. Note that this information will of course stay around, so if ten years later, some other condition develops, the doctor (and I) then can go back and see what we learned before.

Note that in this process it also becomes a lot easier to include other people. My wife, for example, who doesn’t really have time to come to doctors’ visits with me. Or a college buddy half around the world who I trust to have an opinion that might be helpful, or at least knows which questions I should be asking.

And now, we decide I need some third-party service, such an MRI.

3. Here comes to VRM part to this. MRIs, X-rays, CT scans, blood tests, allergy tests, and many other things are essentially standardized services. How do I buy one?

(And buy I do — it may be hidden through layers of insurance bureaucracy and tax politics — but ultimately, I pay for the service, as indirectly as it may be.)

Today, my doctor says “go downstairs and schedule an MRI”, which is nice and easy but nobody ever voluntarily mentions what it might possibly cost. In my recent case, the contract rate for lumbar MRIs with my insurance at Palo Alto Medical Foundation is $1608. My braving the frowns of the various providers involved, I finally got one at Vision Upright for $326.68, for a savings of — drumroll — 80% percent! It took me a bunch of phoning around, and a rather unhelpful insurance company. You sort of wonder, I’m saving them a bunch of money, and how in the world can the same standardized service be 5 times as expensive just 6 miles away?? but I digress.

What I really want though is better. I’d like to post to the public part of my blog a “call for proposals”, or, as ProjectVRM now calls it, an intentcast. For the MRI, it is nothing else than an electronic version of the little sheet of paper my doctor gave me (had to ask, though) that said “get a lumbar MRI”.

And a few hours later, I would have some offers. All the MRI places need to do is something like doing a Google news search on “#PersonalRFP #MRI” limited to a certain geography. (Ok, this can be done better, but we could do wonders already — compared to the state of healthcare today — if we just used internet technology that exists today). I am quite certain that sending some personal RFP responses to people looking for MRIs based on an internet search, say twice a day, is a much better investment of marketing dollars than any kind of advertising they could do otherwise.

I pick a provider I like, and they can post their MRI images (or whatever it is) right back to my personal log, where everybody involved in my care can see them.

In conclusion: collaborative problem solving; data-based investigations; transparent prices and market offers, and in particular, user centricity, would make my life easier, in particular in healthcare when I might be in pain, and worry about what might be wrong with me. It most certainly would produce better medical outcomes (more data, more correct data, easier involvement of more brains) faster (no need to wait for the next appointment). It would help create a competitive marketplace for medical solutions (to my problem) due to price transparency, transparency of advice offered and actual solutions being produced, and the ability of multiple providers to learn from each other. And it would drive prices down, which at 17% of GDP with dubious efficacy is something urgently needed.

Why I say “dubious efficacy”? I’ve had two expensive encounters with the healthcare system in the last 10 years, and one that wasn’t expensive but went on for 20+ years. In all three cases, I was misdiagnosed. In one case, we still don’t know what was wrong. In the other two cases — including the one that caused this post — I found the correct diagnosis myself, on the internet, and the remedy was — free.