In previous blog posts, I've mentioned an idea deserves its own dedicated post.
Over the weekend, I keynoted the eClinicalWorks National User's Conference in Florida. One of the attendees emailed me the following question:
"I have a number of questions regarding certain types of patient-level data that might cause us problems in the future of HIE. No one, to date, has been able to answer these and I thought I might ask you.
The first, and easiest, is how we we going to handle the following situation:
1) I am seen in Boston as a child and my mother says that I am allergic to Penicillin (or pick your drug of choice). The nurse-practitioner asks a few questions of my mother, who isn't terribly forthcoming with information but insists that I am allergic. While he/she has reservations, they record it as an allergy in their eclinicalworks EMR. It goes to the Massachusetts HIE.
2) I move to Washington DC to go to college and the family practitioner hears my allergy story. He asks more detailed questions and decides that I DON'T have an allergy. He records it in his Epic system and it goes to the DC HIE.
3) I get my first job in Dallas. Unfortunately, I wind up unconscious in the Dallas Ed and the doctor queries my records - in our future super-connected world, he/she sees that I am both allergic and not allergic to Penicillin.
How do I, as a patient, protect myself from this happening?"
The best way to accomplish this is for each patient in the country to choose an Electronic Medical Home (EMH) which stores a copy of their electronic data as gathered by clinicians, pharmacies, labs, payers, and other data generators.
The concept is simple. An Electronic Medical Home vendor would create a URL or secure email address for each participating patient.
The patient would provide this URL or secure email address to every caregiver.
At the end of each visit, test or hospitalization the data would be sent securely to the Electronic Medical Home of the patient's choice.
These Electronic Medical Homes could be offered by primary care givers, EHR vendors (such as eClinicalWorks' 100millionpatients.com), or non-tethered EHR vendors such as Google Heath, Microsoft Healthvault, or Dossia.
Over the next few weeks, I predict that even telecoms like AT&T and Verizon will announce eHealth offerings.
All we need to get started is for one of these groups to create simple software capable of receiving clinical data via a RESTful URL or via SMTP/TLS Secure email/XDR as suggested by NHIN Direct.
Electronic Medical Homes nicely solve the problem of consolidating multiple disparate records in one place. They solve the Meaningful Use requirement to deliver summaries and educational materials to patients. The make the patient the steward of their own lifetime records, simplifying consent issues for data sharing.
But what if a patient does not want to be the steward of their Electronic Medical Home? That's ok. It will give rise to a new professional service, the healthcare knowledge navigator, an expert who manages your Electronic Medical Home on your behalf. This could be a primary care clinician, a midlevel (Nurse Practitioner/Physician Assistant) or a trusted vendor.
Here's my challenge to the industry.
Create an Electronic Medical Home using a RESTful URL or the NHIN Direct specification.
As long as you protect privacy, ensure technical security, and obtain patient consent, I will send data to you on behalf of the patient.
Tuesday, November 2, 2010
The Electronic Medical Home
Posted by John Halamka at 3:00 AM
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This theoretical question with its demonstration of myriad detours in human interaction begs further exploration.
It is not a simple answer of attaching more technology to find a solution. It may even compound the problem by introducing more confusing data into the system. The ultimate responsibility should lie between the treating professional team and the patient.
Whatever data is gathered it needs to be corroborated as close to the source as possible with the understanding that the ownership of this data belongs to whoever created it. If it can not be determined which information holds validity by professional scrutiny then the safest treatment path must be taken.
In this case if a safe and effective alternative to treatment is available that is what should be employed. The technics are a tool not the heart and soul of the doctor-patient relationship. The healer must be able to gather as accurate information as possible, establish a trusting empathetic relationship with the patient, and carry out thoughtful care.
Data stored in an HIE or elsewhere still requires proper screening and should never be taken as gospel particularly if it was not initiated by the examining provider. A proper history and exam can not be trumped by someone else's professional or personal input.
Interesting quandry and solution: just the sort of thing we need a health information infrastructure for. Still, in the case described, it sounds like there would still be some point (preferrably not the ER scenario) where the patient or designated physician would have to definitely decide "Allergic or not allergic?"
A few years ago Health Record Banks (AKA virtual medical homes) were all the rage.
We even stood three up in Washington State http://www.accessmyhealth.org/demonstration.php one backed by Google Health and one by Microsoft Health Vault.
FYI - AccessMyHealth.org is not a personalized online health record, but helps consumers and patients safely explore available e-health opportunities—like participating in one of the Health Record Bank pilots.
I understand that is a contrived example however what exactly does this person want protection from?
If I was unconscious in the Dallas Ed I would very happy to know that the doctor taking care of me knows that in 197X in Boston, MA it was reported that I was allergic to Penicillin AND later in 199X it was reported that I have no Penicillin allergy.
Most doctors are very good at sifting through contradictory information and using their training, evidence based medicine and their best judgment to make decisions. That is one reason we make them go to school for so long and pay them so well.
The goal of "super connected health care" is not to prevent you from getting lifesaving medicine just because you had an overly cautious mother. The goal is to put the best possible information in front of the expert when and where they need it.
I am anxious myself for NHIN to kick in by all means and it can't get here soon enough. Good post and informative on Electronic Medical Homes and the choices of both EHR and PHR systems.
Myself with interacting with MDs have really tried to hit too on the Blue Button for VA and Medicare patients as at minimum the patients with very little computer skills could at least find that "print" button and bring it in and with their visits and any documented information once verified by the patient is better than none as there could be a few things to tidy up with a few years of data input to verify and that's everywhere today with old data.
Many MDs have been in shock hearing about the availability, those out of touch in the Health IT area, but they do understand at minimum a patient walking in with prior medical history they can use shows immediate value:)
Good idea, but we need to decide what we want to call these things! First we called them "health banks" then "personally-controlled health records" then "independent health record trusts", and now "electronic medical homes" -- all valid names describing basically the same good idea.
Aggregating the patient's lifetime record under the control of the patient's designated entity (whatever we end up calling it) is the most sensible and most permanent solution to IHE.
As for the concern about the authenticity of the data, it makes sense that provider-authored data should be digitally signed to ward off tampering.
I love the idea of using Direct Connect as the "universal" way to securely move data from provider's system to these HRB/PCHR/EMH entities.
I agree with Dr Green. Sharing raw "data" even if it has an authenticated author is only the beginning. The doc has to use some "out of band" information (as us comp sci guys would call it) to do their job. I love technology but medical "data" that require subjective judgement at the source continue to require subjective validation later on...yes even if digitally signed.
Please docs...don't be blinded by the shiny technology wrapping up questionable data.
I do think NHIN Direct/Exchange holds great promise for a much better "data" transfer mechanism than what we have today but "data" is not always "fact" so keep up your good judgement to go along with the faith in us geeks.
This is a fantastic idea! We've been kicking something similar around at school-wondering how it could be "checked and balanced" and if it is possible to tie into mobile phone and remote health monitoring applications. It could create an empowered user space where patient and providers create goals and treatment plans where participation and results can be measured for improvement and rated by others-like a medical Facebook or Amazon...
I have attempted to implement such a system using Google health as the repository. Now if only I could get my Health provider (Buffalo Medical Group) to link their Epic system in and my employers choice United Health to also do so we could implement this tomorrow. Univera would add the hospital records as well. Last week when I was in ER they were asking all kinda questions which I told them were available in these system, just go look. They said they could but they didn't..Fail
This is a marvelous idea! We've been movement something analogous around at school-wondering how it could be checked and balanced and if it is achievable to tie into transferable sound and It could make an sceptred mortal space where persevering and providers make goals and management plans...
This seems the most elegant way to a HIE.
If every patient is given a personal health record in a data bank as you describe, and every medical encounter from anywhere in the world (physician visit note, test result, discharge summary, etc) gets pushed to that PHR (using the new NHIN Direct standard?), and the patient controls who can access their record, wouldn't that be the best for both providers and patients?
The entire patient record in one place, under patient control, simple, clean, sortable, searchable, elegant.
This seems cleaner than a "federated" HIE model, where data is stored at each provider site, all over the country, hopefully "pullable" from each site 24 hrs/day.
All we need is some standards to define the documents for sorting, and eventually definitions for structured data within those documents.
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