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empowerment

what if corporate personality tools were used in medicine?

Treat me how I want to be treated at that moment without knowing me or how I feel. Seems like a reasonable request, right? Maybe not so much. And still, it’s what our modern —indeed overdue —conversation about patient-centered care demands. Patients and providers are clamoring for better partnerships; they desire to communicate effectively, to understand one another. But we don’t really have great tools and processes in place to support fast, low-effort assessments of learning styles and communication preferences.

Are you visual or aural? Do you need control or want to be directed? Does the nature of a situation affect how you might answer that question? Do you want reenforcement, an opportunity to teach back, an opportunity to question? Do you need time to reflect, or do you make quick decisions? And how many of even clearly know these things about ourselves in our daily lives, let alone when we are dealing with our health and wellbeing.

Imagine this scene: you arrive at your annual physical. Except for the occasional cold, you really only see your physician once a year. How well do you really know each other? You are highly visual and prefer diagrams to lengthy documents. You also like to have all the facts and tend to worry when you feel under informed. You are ok to let someone else plan things, so long as you know the plan. Your physician, in her spare time, is an amature writer. She would much prefer writing to talking, and is often reserved during your interactions. She is of a generation where her training reinforced a paternalistic, I know best style of practice.

You have 25–30 minutes together for your visit. Most of that time is spent doing a physical exam and updating your history. But your physician finds something unexpected, a lump. “Get an MRI and I’ll call you soon when we know more…”

Do things break down?

Do you leave feeling informed or terrified or somewhere in between? Could you describe to your spouse what happened, where the lump is and what it might be?

The challenge with treat me how I want to be treated at that moment without knowing me or how I feel is the unfair burden it places on both parties. How, in a time-restricted environment are two parties supposed to quickly get to know one another’s styles and preferences in a way some spouses even spend years working towards? And, for patients and physicians who have a long-standing relationship, wouldn’t an aid at least help remind you of the other person’s prefernces, so you don’t have to rely on memory or assumptions?

When I worked for a large multi-state health system, we used a commercial tool called Personalsys. Everyone in a management role took an online personality preference test. The computer spit out a brief narrative and color-coded chart. As will not be a surprise to those who have worked with me, I tend to be highly energized by ideas and creative brainstorming and am less driven by deadlines than others (something I’ve had to build systems to help support). Many of my healthcare finance coworkers, at the risk of generalizing, were, conversely, highly structured. They like plans and deadlines and clear objectives. If we had a meeting, someone would see my chart and the spikes in my green creative areas, where they might have spikes in their red structure areas. “Ohhh you’re one of those aren’t you? All creative and loosey-goosey…” And we’d laugh and poke fun at each other’s personality traits and preferences. “yeah, well I bet you’re all tightly wound and obsessed with numbers…”

Personalysis

In reality, the framed charts behind everyone’s desks became a bit of an inside gag. The insecure among the lot would cast their doubts on the efficacy of the hippie tools and new age management practices. But even the doubters knew there was some benefit to understanding how their colleagues work and think. You could walk into someone’s office, and know within seconds how they like to interact and work with other people, and in turn what you might expect from them.

There are other examples of these types of tools which are being deployed increasingly in large corporate settings. The DISC assessment, for instance, looks at how a person feels about control using the vernacular of dominance, inducement, submission and compliance. And what discussion of personality inventories would be complete without a mention of my personal favorite, the Myers-Briggs Type Indicator (I’m an ENFP for the inquiring minds out there)?

DISC

Visual and narrative aids like Personalysis or the DISC assessment, are not commonly a part of patient-provider interactions. But why shouldn’t they be used? Imagine if every patient had a card with a visual indicator on one side, in a short narrative about their preferences and styles on the other. What if every doctor had a similar tool framed on the wall of their exam room and office? Patient styles and preferences would be stored in medical records and patients could learn about their physicians’ styles online before visits.

Now imagine this scene: you arrive at the emergency room with chest pains and shortness of breath. You are scared, but not in dire straits. You are taken back, immediately, into an exam bay. A physician comes in, sees your chart and knows right away that you like to be in control of situations. You are aural and work better with big pictures than minutia. How might their communication style change to meet your needs, where you are, at that exact moment? Perhaps, in stead of patting you on the shoulder and saying “you are going to be fine dear…” they might instead offer “Ok, we’re going to move quickly, my concern is a blockage, so we’re going to get you to the cath lab, you’ll remain conscious, this is a great team who has done more of these than anyone else in town, after the cath, we’ll know more. Is that plan ok with you?”

To be fair, I suspect the later example is more typical of modern physician communication styles than my patronizing former example. But there is still room for a tool to help aid the process.

We need something quick, easy to understand and effective. It should be a two-way tool, allowing both patients and providers to quickly understand each other and meet in the middle. If this idea of participatory shared decision making is to work, it’s going to need some aids. The good news is some examples already exist. The folks at Diagram Office, a New York-based design firm have created some fantastic conversation aids around shared decision making.

Diagrams OpenIDEO submission

I’m still looking for a solution which fits upstream of decision making. I’m suggesting something which exists as the very first step between a patient and provider, before a word is ever spoken.

Anyone have a prototype?

What if there was an EMR built on Wikipedia?

WikiEMRI’ve been thinking about EMRs, electronic medical records, lately. It’s a subject, despite some professional experience, I don’t feel particularly close to. In fact, if anything, they are a source of consternation. As an industry insider, I see them as an expensive albatross around our collective neck. As a human centered design advisor, I see them as an encumbrance for both providers and patients. And, as a patient I see them largely as an opaque blob of data about me with a placating window in the form of a portal.

Which makes me wonder, am I obsessed with EMRs lately?

One of the reasons is certainly my personal interest in technology. And, while I don’t work in health IT, it’s natural to draw some connections. For instance, Wikipedia is consistently in among the top 10 most visited internet sites ( it is currently number 6 ). And, say what you will about citing Wikipedia, but a 2010 study found it as accurate as Britanica. Google trusts Wikipedia enough to use it as the primary source for its knowledge graph cards; and we’ve all settled a bar bet by finding some fact where a Wikipedia article is the canonical answer.

The secret sauce for Wikipedia is in it’s roots. Literally, the root of its name, wiki, describes the underlying structure. Wikis were the internet’a solution to knowledge bases – large repositories of information about a process or thing. Companies had been using knowledge base software for years. Traditionally, a central maintainer, often a sort of corporate librarian, curated information, such as common answers to customer questions, so customer service reps could find it quickly.

Wikis democratize the knowledge base by allowing anyone to edit an entry. If you work for a company which sells widgets and you discover a new way to service the widget, you simply amend or append to the record in the corporate wiki. But what about the corporate librarian, they all cried. Except, no body cried.

It turns out, the network effect and the wisdom of crowds produce richer, more accurate databases of knowledge when the literal barrier to entity is removed. Make it easy for anyone to input knowledge, and the database and its accuracy grow. And so it came to be, since anyone can edit almost any entry in the largest encyclopedia the world has ever known, Wikipedia is remarkably current and accurate.

So I wonder…what if medical records worked like Wikipedia?

What if, my record lived on some commonly accessible platform; not open to anyone, but accessible by my providers and I? Maybe we have to do some kind of online handshake to mutually access it.

What if we could both edit the record, at the same time? My doctors could put in their notes and I could add my own. Or I could edit theirs. And they could edit mine.

Some readers may have concerns about the records’ integrity but as patient advocacy expert Trisha Torrey points out reviewing our own medical records can help spot and fix errors. And, as we know from Wikipedia, more eyes and contributors on a record increase its accuracy and reliability.

Another important lesson from Wikipedia is the idea of revision log, which Wikipedia calls page history. Any registered user can make edits to almost any record in Wikipedia’s vast online encyclopedia. Every time an edit is made the changes are logged, including the name of the user who made them. Anyone can review the changes and roll back some or all of them, or make additional changes of their own.

Imagine a medical record platform where patients can review the entries made by a doctor, and if appropriate make additions at it or even changes. For instance, after reviewing notes from my last physical, I discovered a small unimportant inaccuracy in my record. I take Vitamin D supplements, and in the record, it was noted that I take Vitamin E. Big deal? Probably not, but what if it was related to a prescription medicine? Providers are human and, as we know, to err is human, but by allowing patients to review and edit their own records, they would be able to fix errors.

A Wikipedia-style EMR would also better allow for patient-contributed data. There are often symptoms, observations or measurements which patients observe outside of the timeframe of a visit with their doctor: a week of poor sleep, a month of improving blood pressure measurements, an off-again, on-again skin rash. These kinds of things may not even warrant a phone call, but wouldn’t it be nice to log them directly?

Finally, and this may perhaps be my strongest argument for a Wikipedia-style EMR, we’ve got to do something about data exchange. Color me cynical, but I’m not convinced the health information exchanges (HIEs), offered by the major EMR vendors as well as technology giants such as Oracle, are the answer. Each EMR vendor has a financial incentive to keep their data in a proprietary format. Further, their customers are, by definition, the providers, not patients.

No, what we need instead is a common, centrally accessible platform where patients and providers have parity, equal footing. No one party’s observations, notes, measurements, or data trumps the other. A common platform would make it easier for different providers to openly collaborate, in front of the patient, virtually, in a common record. Your specialist could be literally updating the same records which you, the patient, are adding to while your primary care doctor is also reviewing and making edits. Dogs and cats, living together. Mass hysteria!

GB

And there’s an extra credit reason we need a Wikipedia-style EMR. It doesn’t just promote or enable patient empowerment, it demands it. Owning our own data requires responsibility. It becomes the patient’s garden to tend. And its our right to tend those gardens.  Stephen Ross and Chen-Tan Lin, writing in JAMIA, concur:

Overall, studies suggest the potential for modest benefits (for instance, in enhancing doctor-patient communication). Risks (for instance, increasing patient worry or confusion) appear to be minimal in medical patients.

This doesn’t have to be a pie-in-the-sky dream either. Someone could build a WikiEMR today. The platform which runs Wikipedia is called Wikimedia. In fact, it would likely meet all of the Meaingful Use Stage 1 requirements…except one, and could be regarded as HITECH-compliant:

  • Anyone can download it, or install it on a hosted server. It can use the same strong SSL encryption which protects Epic, Allscripts, Athena and McKesson platforms.
  • It is free (a substantial discount off the price tags stuck to the EMR giants).
  • It provides user access audits and record edit history.
  • It is accessible via mobile and desktop
  • It can use multi-factor authentication
  • Wikimarkup, the simple language used on Wikimedia sites, supports mathmatical calculations so a WikiEMR could do unit conversions, Boolean checks, and data aggregation and reporting (including graphing).
  • It can generate reports for the MU core measures including abstracting 14 core objectives, 5 out of 10 of the menu objectives, etc.

What one, small, requirement is missing? As far as I know, Wikimedia is not a certified EMR. Anyone want to start a fund drive?