If Information Wants to Be Free, Why Don’t We Share More Clinical Info?

Like many people out there, I’ve found myself running an HIE of me. I don’t mind being my own HIE, that’s great. I prefer having the control over my medical data. My issue is that the data is not easy to get in the first place, and it’s even harder to share with someone who can actually use it to make a decision: a physician.

Here’s the story:

I recently had an MRI based on a sports injury. It required injection of a contrast agent into the joint, then a pretty long period of time in the small, hot MRI chamber with what seemed like a jackhammer going off right next to my head and nothing to see but a ventilation vent 2 inches from my nose.

I came to a realization during my 40 minutes in the chamber: just about all health care data requires torture, either pain, time or effort. It usually requires some pretty unpleasant experience.

Data is like a raw material. So, like any raw material, extracting medical information can be very hard, and that means it often comes with a high price, a needle stick, an MRI, a biopsy, or waiting 10 days for an appointment, then a half hour in the waiting room for a 10-minute conversation. All the suffering also should give us some indication to it’s value. If I’m willing to be tortured for this data and go through all this unpleasantness that is the health care system, it’s valuable for me to get it and use it to get my problem solved as best I can. This concept was mentioned the first time “information wants to be free” was used.

According to Wikipedia, the earliest recorded occurrence of the expression “Information Wants to Be Free” was at the first Hackers’ Conference in 1984. Brand told Steve Wozniak:

“On the one hand information wants to be expensive, because it’s so valuable. The right information in the right place just changes your life. On the other hand, information wants to be free, because the cost of getting it out is getting lower and lower all the time. So you have these two fighting against each other.”

Extracting it the first time is hard, but then it should be easy to share. The motivation is the same, to get decisions made. And the decisions you can make with medical information are what determines its value. I believe there are 5 phases of medical information:

  1. Extracting the data (interviews, diagnostics)
  2. Collecting and analyzing the data (in a location)
  3. Accessing the data (from a location)
  4. Patient-physician and physician-patient sharing
  5. Physician-physician sharing

Each of these phases has different risk-reward motivations and technical challenges.

In my case, I’ve gone through the painful part of the MRI and I have collected a CD of my MRI images here in front of me, and I can access it. Now I’m on to step 4 and here’s where it’s getting difficult.

I want to see an orthopedist who can tell me what my options are, but I can’t share these pictures on a photo-sharing site because of format and viewer tools, and I’m not sure I could even use a dropbox-style system. I wouldn’t be able to get a doc to look at them. They need to know that they are me, and there aren’t currently any online identity standards, despite the lack of real-world, snail mail standards that are as rigorous.

I could mail them or bring them in and they’d really be no more sure of who’s bones they were viewing. Somehow having a physical object is more acceptable or reduces risks. So, I’ve been making copies of the CD and sending to a number of docs for multiple opinions, then making appointments to see them. So far, I’ve been to one doc, the CD supposedly sent by the hospital never made it. Where is it? Who knows, but my name is on it and it’s not secured in any way. They’d almost be safer on Facebook.

(BTW, I have a patient portal for one doctor, but it doesn’t allow image sharing. Still, it’s a good first step, but it’s like having an email address for yourself that only works with people at one organization. I need a universal portal, or even a universal e-mail. )

The providers just don’t have much motivation for sharing, and I can’t say that I really blame them, because there’s a lot of risk and not much reward. Making HealthIT work has never been about technology, it’s a matter of will.

Where is our Will to Share Medical data?

Perhaps nobody has a bead on online behavior and our willingness to do things online more than Stanford professor and behavioral scientist, BJ Fogg.

Fogg has developed a behavior model that’s used by designers of online tools, mobile tools and other uses beyond technology. It applies to human behavior in general and is simplified in the equation Behavior(B)= Motivation(M) Ability(A), Trigger(T). He uses it to describe what is needed behind many behaviors, and could be applied to several arenas beyond just healthcare. A graph of his model looks like this (reprinted with permission): 

Behavior (we perform some action) happens when, motivation, ability and triggers come together and achieve some threshold. It’s not unlike the activation energy in thermodynamics that I described in 2011 for reaching a threshold for political action during the Arab Spring. The same kind of dynamic is applied. Our motivation has to overcome some ability to make something happen, then has to be instigated by a trigger. In the Arab Spring example I used, the will of the people for change didn’t happen until coordinating their efforts became easy enough (Ability) to make it happen with the trigger of the street vendor who started with the ultimate act of defiance on Dec. 17, 2010.

I believe the same formula can be applied to why health care data isn’t shared and a whole host of other debates currently raging.

If you look at the graph of the Fogg Behavior Model, health care folks and patients are really highly motivated when something goes wrong or they are in pain. Fear drives our motivation, we’ll have the test done even if it means a lot of pain, by and large, when we receive the trigger of a physician’s suggestion to have the test done. That’s the first category, generating the data, and by and large, we have high motivation, and, with insurance, high ability to have the test done.

Then, there’s a matter of getting the data and sharing it. First, getting the data once it’s been generated isn’t easy. I have MRI data on a CD, but I had to ask for it. Most people probably don’t. The patient bill of rights (LINK) and Meaningful Use are a good start, but I think the default has to be accessing the data in the first place. Patient access to data should be automated.

Behvavioral Economists like Thaler and Sustein, authors of Nudge, will tell you that default options make all the difference. “Thaler and Sunstein note that in Germany, which has an ‘opt in’ system…only 12 percent of citizens chose to participate as donors. In Austria, which adopted an ‘opt out’ system, the participation rate rose to 99 percent.”

Defaults matter. Once we move beyond the default settings and have the data in our possession, It’s a pretty simple risk/reward equation most of us run in our minds before we decide to take action on sharing. According to a recent report by Boston Consulting Group (hat tip to Vince Kuraitis):

“Individuals with a higher than average awareness of how their data are used require 26 percent more benefit in return for sharing their data. Meanwhile, consumers who are able to manage their privacy are up to 52 percent more willing to share information than those who aren’t.”

If I share pictures with my friends on Facebook or Instagram, I’ll sure want to share my medical info securely with docs I can trust, but I’ll need to know that the information will actually be used.

On the flip side, physicians are demotivated to share by fear of HIPAA, fear of losing patients along with their data, or getting sued with the evidence data can provide. There’s a lack of trust and lack of incentives. Of course, we’re working on that through Meaningful Use and payment reform, but I’m not sure that either will be enough to overcome that threshold. I sure hope they will get us close.

Almost certainly a solution will involve allowing patients to share with doctors akin to MeHC Patient Engagement Framework.

I’m hopeful for the Framework because I’m starting to think that we may never get physicians to share patient data, even with the right technology in place, until patients are enabled to share it themselves. Until patients have more control and better access to their own data, we may be stuck in a health care bubble, largely created by information asymmetries between doctors and patients.

First, we’ll need to shift the balance of information availability then get physicians to actually use it.

Will physicians use data shared by patients? In my own story, the MRI data I brought to my doctor was used for a diagnosis, and that’s all I really wanted. This happened because I was able to share it, by hand, not at all securely, and at the end of the appointment, I asked for a note explaining why I’ll need crutches while traveling. The response I got back: “We’ll have to send that to our dictation service and mail it to you, you should have it in about a week, we can’t fax or email that kind of secure information.” Eventually, I did get the note faxed once I assured the PA that I had my own, private fax machine. The note said pretty much “he’ll need crutches for ambulation.” Far, far less information than is in this blog post, but it’s my story, and I can share what I want. I hope the same will eventually be true of all my data.

It occurs to me that there are a lot of jobs dependent of doing things this way. Is this kind of non-value added service indicative of a bubble? Perhaps a topic for next time. ♦

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Leonard is Principal and Co-Founder at VivaPhi, an agency that solves multi-disciplinary business problems involving data science, software, biomedical science, behavioral science, health care, product design, community development, marketing, consumer engagement and organizational design. He has been quoted in Forbes and other top-tier publications for thought leadership on patient and consumer engagement. In addition to his role at VivaPhi, he is Chair of the Marketing and Communications Group for the Collaborative Health Consortium. Prior to VivaPhi he held the position of Vice President of Operations at Capitis Healthcare International as well as executive positions with several startups. He started his career as a software requirements analyst on Qwest Communication’s highest priority IT project while earning a triad of advanced degrees from the University of Colorado. These included an MBA, a Master’s of Science in Information Systems and a Master’s in Biomedical Sciences (Thesis on System Dynamics in Parkinson’s Disease). Leonard earned a Bachelor’s in Zoology from Miami University in Oxford, Ohio. He’s interested in how systems evolve, and how to help them evolve, in a variety of unique contexts. Connect with Leonard: @leonardkish, LinkedIn and Google+

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  • http://twitter.com/chasedave Dave Chase

    Great piece, Leonard. It will be interesting as high deductible health plans become more pervasive whether that will change consumer/patient behavior to push harder. As a datapoint of one, it’s certainly changed my behavior. When I was on a Cadillac health plan where I paid nothing (literally), I didn’t care much about retests, etc. Now that I’m on a $10k deductible, I question the often unnecessary use of procedures as those substantial costs come out of my pocket.

  • http://twitter.com/leonardkish Leonard Kish

    Thanks, Dave. I have good insurance and some deductibles, but I see all this info as an investment in information with a pretty short half-life. I want to ensure that it’s used in a timely manner to make the best decision possible. Learning that I’m the one responsible has motivated me to ensure I get my medical info and manage it myself, but it should be as easy as sharing other sensitive information with my colleagues.

    Because patients (like me) will always have the most motivation to get a good decision, we need to give them the tools to manage that information and get the best decision made in the shortest amount of time and educate them on that power.

    Right now, the focus is on giving docs tools, but I’m not sure they’ll ever have the motivation, but perhaps ACOs will.

  • Richie Piovanetti

    Information IS FREE, data is NOT…!!!