So in my last post, I discussed the "patient identifier problem", and how it contributes to poor connectivity between systems. I discussed some of the political problems with sharing health information, and some common, differing perspectives. I also briefly discussed some of the models being developed, including NHIN/Direct (now officially called "The Direct Project").
One thing I forgot to mention that makes this all more complicated are the myriad of privacy laws - Not just HIPAA, but also various state laws about transmitting or even storing data about HIV and other transmissible diseases.
There are a lot of issues to be worked out, clearly, but I think one of the major issues is simply making organized change with all of these political, financial, and technical obstacles in place.
I. WHO'S THE BOSS?
So let me first ask - Who's the most powerful person in healthcare?
I sometimes ask friends and family this question, and it's interesting to hear people's guesses. "Obama?" "Hillary Clinton?" "The insurers?"
My response : It's the patient.
I think people forget : The patient is the boss. They are the ones who pay the tab for healthcare, whether it's the insurance premiums they pay, or the taxes they pay... They are the one making the choice about where to go, and so they have enormous influence about who succeeds in healthcare.
When it comes to healthcare reform, there is often talk about laws, and doctors, and insurance companies, and nursing unions, and medicare and medicaid - But I think patients are an untapped resource in the healthcare reform discussion.
The problem is that, from my experience, a lot of patients are sort of like the substitute teacher we all had in grade school - Even though they are technically in charge, they're new, they just showed up today, they don't entirely understand the routine, and so they sometimes lack confidence and can be subject to "But-Mrs.-Smith-we-ALWAYS-have-three-hours-of-recess"-type arguments that sometimes steer them.
So I've often wondered - What if a group of coordinated, informed patients could really assert their power?
II. COORDINATING A CHANGE
The problem is, as I said, most patients are too new, or too inexperienced to know what to look for. When doctors and nurses become patients themselves, they can be some of the most challenging patients - Why? Because they know what to look for and how to assert their power.
So then I wondered - Could we somehow train all patients to know what to look for? Could we get patients to ask for different care? How would they know what to ask for?
So I thought - To help patients assert their power to make change, we need to make it easy for them to ask for change.
So then I thought of solutions. For those readers who are multi-lingual, or amateur linguists, you'll appreciate this : Language is fluid. It's not as precise as most people think. Even though modern English has been around since about 1550, linguists know this : words enter and leave the lexicon all the time.
So what if we employed a linguistic feat and came up for a new word for this new type of healthcare? Something evidence-based, efficient, affordable, and connected?
How could we get patients to ask for this type of healthcare? What if we could get lots of patients to ask for this type of healthcare?
III. DEVELOPING THE STANDARD FOR INTERCHANGE
The first trick is, defining a standard for this future model. From the ground up, the new healthcare paradigm has to be built. The informational framework for healthcare has to be laid to allow hospitals to run efficiently, and for patients to be able to - only if they wish - bring their data with them. That is, one patient = one chart. So when a patient moves from one office to another, the systems will talk to each other and allow true data portability - Without having to push or pull the data.
Why would a patient want a standard for data portability? Why would they care that other doctors can read their chart from another hospital?
- It reduces errors (because doctor A knows what doctor B has been doing)
- It reduces unnecessary tests (because doctor A knows what doctor B already ordered)
- It reduces costs (because fewer tests means lower bills)
- It reduces waiting times (because doctors don't have to spend time trying to research your history)
IV. THE SPEAKFLOWER PROPOSAL
The next trick would be, naming the standard something easy. A lot of "Health IT standards" have names like HL7, CCR, CCD, LOINC, DRG, ICD-9, etc.... Not too tangible to the average patient.
But what if we named this standard something really warm and friendly and tangible... Like "SpeakFlower"?
In other words, "SpeakFlower" is a placeholder for a standard that allows a patient to ask for a doctor/hospital/office to have all of their medical records transferred to a central site that the patient controls, so that other doctors could look at it in the future. It means not only building a particular HealthIT standard into the EMR, but also adopting the practices needed to employ it.
Could we get patients to ask for SpeakFlower? What if they did?
V. SELLING THE CONCEPT
The joke goes, "Standards are like toothbrushes - Everyone knows what they are, but nobody wants to use yours." We have lots of different EMRs, and a few standards, and yet there doesn't seem to be universal agreement on which standard to use, and how to use them.
Why? I think there are a lot of reasons - Complexity of our healthcare system is one, but there's also privacy issues and a lot of competing financial interests. In the end, fighting for a national standard is very challenging.
So what if a coordinated group of patients developed a 100% optional, national standard and how to use it? And what if they called this optional standard SpeakFlower?
Could we sell this concept of an optional national standard? I think so.
After developing the SpeakFlower technical framework (HealthIT standards, central servers, HIPAA-secure gateways, etc.) - You then need to teach patients about SpeakFlower. And how to do this?
Imagine a commercial on the Superbowl, where Wilford Brimley comes out and says :
"You know, my primary care doctor almost ordered something that interfered with something my cardiologist gave me last week, because she didn't know what my cardiologist had prescribed. And my cardiologist almost ordered a test I had last week in the ED because he didn't know what the ED doctor had done. And all of these extra tests, bills, and waiting time are really getting me down... But now, with SpeakFlower, all of my doctors can share my information easily and I get to keep track of it. So ask your doctor... Do you SpeakFlower?"Why Flower? Because flowers are ubiquitous. They come in every shape and size, are found in every country in the world, and no matter what it looks like, it's still a flower. Flowers are friendly, peaceful, and represent growth, life, and vitality. This optional standard that patients might ask for should represent peace and life.
Oddly enough, if you diagram the model that puts the patient at the center of the medical record, and have all of the providers/hospitals/labs/pharmacists as connections to the patient in the center - The diagram almost invariable ends up looking like a flower.
Why speak it? Because like a person trying to communicate in a foreign language, we might ask for someone to speak the language we know. Asking to SpeakFlower is asking a doctor/hospital's EMR to speak a particular language - It says, "Please have your EMR speak the language I need to accomplish the goal I'm asking for."
The hope would be that simply discussing an optional, national standard for healthcare data interchange would be enough to get all vendors, doctors, and hospitals to adopt the standard and implement it for those patients wanting their charts to be portable. It would also help simplify the privacy discussion, because patients would actively seek out SpeakFlower - Makes the whole discussion on "opt-in-or-opt-out?" much simpler. It would also allow docs and hospitals to generally keep their legacy systems - Implementing SpeakFlower does not require painful amounts of programming, just adherence to the SpeakFlower standards.
But if the discussion wasn't enough, then the hope is that the Wilford Brimley commercial on the Superbowl could spur the discussion - in the same way pharmaceutical companies have gotten patients to ask for drugs, patients could start showing up saying, "Dr. Stanley, do you SpeakFlower in your office?" and have an understanding of the benefits of SpeakFlower.
And even if 30% of my patients asked me to SpeakFlower, I'd probably have little choice but to make sure my EMR SpokeFlower, for those patients requesting it. So I'd speak to my vendor and ask them to make sure my EMR can SpeakFlower.
VII. SPEAKFLOWER TODAY
There is a SpeakFlower.org web site, which I started to develop with two colleagues in our spare time, but you'll notice the web site is outdated and quite frankly, we realized planting SpeakFlower in our national garden would require much more time and capital than we currently have. (Namely, weekends and nights.)
But we're still trying to build it and transplant it to the right FlowerPot. Our hope is to make SpeakFlower a force of good in healthcare. We also have a #SpeakFlower hashtag on Twitter that we apply to tweets that discuss patient-centered electronic medical records.
Healthcare needs innovative ideas. If you're interested, follow @SpeakFlower on Twitter, feel free to use the #SpeakFlower hashtag, and look for the SpeakFlower gardening team as we look for the right pot to plant in. :)
As always, I welcome any comments and thoughts.