Creating a Facebook-like medical record

The explosive growth of Facebook and MySpace illustrates the market for electronic tools to enhance communication and collaboration. Could there possibly be another workplace more in need of social networking tools than the modern hospital?

If you are not familiar with Facebook, find yourself a teenager and take a look over his shoulder while he is using it (mine are available for rent if you get desperate; the best time to catch them is when they should be doing homework). In one thrilling, chaotic electronic e-universe, the site allows users to exchange instant messages with dozens of friends, to post pictures and videos, and to link to virtually everything on the Web – all at the same time. John McCain would be flabbergasted.

Now, take a look at today’s medical record, and ask yourself whether – if we could start fresh – this is the tool you would have constructed if your goal were to allow a diverse group of providers to collaborate while caring for terribly sick patients. In particularly, would you have members of each tribe – docs, nurses, physical therapists, nutritionists – writing notes in their own style, using various totems and ritualistic phrasings, in files separated by colored dividers that might as well be electrified fences?

Of course not. In fact, today’s medical record virtually guarantees the silo-ization of care. Few physicians ever read nurses’ notes, even though all of us depend on the nurses to be our eyes and ears. And the situation iteratively worsens every day. Why would a nurse, realizing that no doctor ever reads her notes, even try to write them to be useful to physicians? And visa versa, obviously. Over the years, this divergence has been codified into ritual, calcified by templates, and hard wired through regulations whose original rationale no one can remember.

Even within the tribes, it’s not much better. If you are a physician, have you tried to decipher an ophthalmologist’s note recently? It might as well be carved in Sanskrit.

The result is that the patient’s chart – which cries out to be a collaborative tool – is precisely the opposite. Since the transmission of information is so crucial to the conduct of patient care, a maddening workaround emerged: the paging system. If you’re a physician, think how many of your daily pages (or, if you are très modern, cell phone calls) could have been handled via collaborative written interactions, if such a forum existed in the chart. If you’re a nurse, think how much of your time you’ve wasted paging doctors, since you lacked a method of posting a comment or question that would be reliably seen and addressed.

The need to bring social networking-, Web 2.0-type thinking into the workplace is not unique to healthcare. For example, the CIA and FBI have built a Facebook-like system, called “A-Space,” and will launch it later this month. “It’s every bit Facebook and YouTube for spies, but it’s much, much more,” said Michael Wertheimer, assistant deputy director of national intelligence for analysis. (He could have given us more detail, but then he’d have to kill us.) Our spooks will be mining the conversations for patterns that would be unlikely to emerge (read: 9/11) absent this kind of tool.

You’d think that medicine’s conversion from paper to electronic records would solve many of these problems, but – to date – all it has done is create new-fangled electronic silos. In most EMRs, including the GE system we’re using at UCSF, the notes are really just electronic incarnations of what previously lived on dead trees – no more likely to facilitate collaboration than the paper records they replace. The EMR is still progress, mind you (at least people can read my writing), but it doesn’t address the fundamental problem.

Let me describe an interesting natural experiment that vividly demonstrated to me the need for a collaborative social networking tool within the medical record. When the house staff duty hours limits first hit in 2003, we began focusing on how to improve resident sign-outs, which would soon nearly double as we shifted to a world of Day Floats, Night Floats, Weekend Floats, Root Beer Floats… The result was a homegrown program called Synopsis – a stand-alone module that lived on a couple of computers in our house staff lounge (I’m hoping we’ve passed the HIPAA statue of limitations, since the system wasn’t even close to compliant), on which residents could keep a running update of their patient’s condition, including meds, problems lists, and –- most importantly –- to do lists and “if/then” statements.

Even in its early, primitive state, Synopsis was a blessing, but a few problems arose quickly. First, about a week after we launched Synopsis at UCSF Medical Center, I got a call from a chief resident at San Francisco General Hospital, our sister (but unaffiliated) hospital through which our residents rotate. “Who is doing the IT support for Synopsis?” she asked. It turned out, we had just worked out which of our IT folks would be supporting the system – at UCSF Medical Center, where the system had been implemented. But why was the chief resident calling from SFGH, I asked. “Oh,” she said, “ one of the residents really liked the program, loaded it on a CD, and brought it to SFGH yesterday when he came for his clinic.”

Does anybody know the antonym for “firewall”?

The SFGH migration demonstrated that Synopsis was addressing a crucial need. But a second problem emerged that is more germane to today’s topic. Within a few weeks of the launch of Synopsis, we began getting calls from the nurses at UCSF, begging for better access to the program (at that time, it lived only on our departmental computers; it has since been embedded in the official hospital EMR). At first I wondered why –- after all, this was a program build for the house staff, largely by the house staff, to fill a gap: preventing fumbled resident-to-resident sign-outs.

Well, that’s precisely what the nurses loved about it. Turns out that the nurses, literally starving for information from the docs about what was actually happening to their patients, took to Synopsis like a moth to flame –- seeing it as the only place in the chart where one could get the real scoop about the patient and the plans. So they literally begged to have access to Synopsis, and then to leave notes to the residents on it. Ditto the social workers and case managers. It seems that these non-MDs didn’t like having to page the overworked physicians for every little thing, any more than the residents liked receiving their daily barrage of pages.

That’s when I finally got it: How great would it be if, through the medical record, I could interact with multiple specialists who have seen my patient – in real time, just like my kids are interacting with far-flung friends on Facebook. And if nurses could leave me a note which I could answer online without having to respond to a page. And if the daily plan for a patient – developed collaboratively – could be shared among all the caregivers, with notes appended when a patient’s clinical ship seemed to be blowing off course.

Development of a Facebook-like medical record would not be trivial. Russ Cucina, my hospitalist colleague and window into the IT world, tells me that some of the big EMR vendors have begun working on it, and I wish them Godspeed. I recognize that even if such a module existed, the need for physicians and nurses’ notes, in their classic stilted style, would not evaporate, largely because of regulatory and billing requirements. It will be crucial to look hard at what is truly required and what is simply ritual and custom, and to jettison the latter while we try to modernize the former. In the meantime, an EMR with Facebook-like functions will need to thoughtfully import other parts of the medical record to minimize redundant work.

There are other challenges. For example, I wonder how we’ll ensure that a more free-form portion of the medical record doesn’t become trivial or gossipy. Why worry? When we first brought Synopsis into the EMR, housestaff often didn’t realize that it was just as “official” as their progress notes, leading to problems ranging from the widespread use of unapproved abbreviations to comments like “try to avoid Mrs. Jones’ daughter – she’s a real pain.”  Obviously, we’ll need to both educate the providers and implement some electronic tools to ensure that the site’s use is professional and passes regulatory muster. As one example, our EMR now automatically finds verboten abbreviations (“qd”, “MSO4”) and prompts you to replace them. Though the system is pretty slick, it doesn’t yet flag words like, “…she’s a real pain.”

I know we have lots of readers who are IT gurus, and many are working on various kinds of collaborative and social networking sites in health care (a field that has assumed the moniker, “Health 2.0”). But the vast majority of this activity has focused on activities like patient-to-patient support groups (such as patientslikeme), patient information sites (e.g., WebMD), and personal health records such as Google Health and Microsoft HealthVault. I’ve seen far less discussion about creating a Facebook for the medical record.

I’d love to hear from some of our IT-oriented readers – perhaps there is more activity in this area than I know about. I hope so – this seems like a vital tool to support the kind of collaborative care that sick patients really need.

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  9. Dr. Wachter, thanks for a great story of the overwhelming need for collaboration in healthcare, and the systemic cultural problems. Your story reminded me very much of the birth of Pfizerpedia, which launched on an old desktop under someone’s desk: http://pubs.acs.org/email/cen/html/090207084512.html
    Better than Facebook might be a wiki, which keeps the “record” and notes together but in separate tabs yet is robust and extensible.

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  11. Dr. Wacher –
    It was only time before a HIPAA consultant would offer his two cents worth to your Facebook-like Medical Record idea!
    Fact is, I have been suggesting a HIPAA privacy & security program integration for EMR’s without much success for several years. However, your suggestion of taking EMR’s another quantum leap provides may provide the radical rethink to integrate privacy and security regulations into the program in a way that simplifies use and ensures a high level of “unified” compliance. Just one more benefit to the Facebook/Medical Record concept.
    I suspect a multitude of value could flow from a communications tool like this.
    Grant Peterson, J.D. http://www.dgpeterson.com

  12. Great article by Dr. Wachter.
    I wonder, however, whether we are championing an IT approach where a nontechnical/medical approach would be as appropriate, or even more so.
    Ideally, all relevant medical information should flow together at the admitting doctor, resident, PCP or hospitalist (you know, the guy doing the d/c summary). The plan and relevant changes to it should also be documented in the chart.
    If we take care that EVERY doctor’s note contains a legible and undersatndable summary and detailed plan, we would be doing much better (I share the frustration, in particular with the cryptic ophthalmology notes). That is something teaching physicians ought to teach, in addition to the specialty specific dx and plan, and yet it rarely happens:
    -what needs to be communicated for this patient A) to other doctors B) to the nursing and therapy staff (C – patient, relatives, also important but not the issue here)
    -what terminology should I use (e.g. shouldn’t you also write Gullain Barre and not only AIDP?)
    -if new orders are written, make sure that the indication for the test or treatment are stated (this is still very frequently overlooked for dx tests/consult despite this being a requirement, and it is usually not done at all for new tx/med orders)
    Synopsis or sthg similar might be useful particularly in teaching hospitals with rotating in house residents (esp. after the change of admissible work hours for residents). I see a lot of potential liability issues if an official part of the chart contains an alghorithm like: If …. then, and this alghorithm turns out to be wrong or not appropriate in a given situation and in a changing patient. Or if it contains informal, but useful statements that are usually communicated orally or on sign out sheets (e.g. potential drug seeking pt., the pain of Mr. Jone’s daughter etc.).
    And most importantly, is the medical note (consult/progress note) part of the “facebook page” or not? We certainly don’t want to get into doubletalk (e.g. official note reads: concerned about Gullain Barre – Synopsis/facebook: I rather don’t think so).

  13. This is an old idea for the med-geek population. Naturally every health care provider organization wants to develop their own version. Which gives us today’s tower of medical babel. Wouldn’t it make more sense to give it to the patient, and ask the patient to give access authorization to health care providers? That makes it infinitely portable when a patient’s insurance changes, requiring him to trundle off to a whole new set of providers. It also gets the medical providers off the HIPAA hook.
    In fact, I think Google is already doing this. However, the launch seems to be a bit half-hearted and having tinkered with it, not as well organized as one might wish.
    Which leads me to ask… since we like the Facebook model so much (an millions of youngish Americans can’t be wrong), why not talk to the Facebook folks about leveraging the code they’ve already written to create an offshoot for health care information?

  14. MedCommons is already a Facebook app that links health records to care teams. The app manages the membership of the care teams, a wall and discussion boards via Facebook. It also uses OAuth standards to link a patient’s Facebook identity to their private health record on servers hosted at Amazon. Care team members see the MedCommons app on Facebook as a single-sign-on mechanism so they do not need to have their own MedCommons accounts if they don’t want to.

  15. A Facebook type application for the medical record is desperately needed. As a pharmacist I review profiles and can suggest subtle changes to the patients medication regimen. However, the gathering of the information needed for the suggestions is so cumbersome that it takes forever just to make a few recommendations. I frequently have, if this happens then… recommendations but never get to follow up on them. A Facebook type recors would facilitate communication so that the best care can be delivered.

  16. This is such an intriguing idea – the part that is most intriguing to me is the nurse to physician or specialist to physician interaction around consumer care. And as far as the non-professional notes – that is more of a culture issue than a tool issue in my opinion.