AHRQ Patient Videos - Become your Own Primary Care Provider

In an interesting use of technology and social media AHRQ (Agency for Healthcare Research and Quality) have a series of public service announcements directed at patients encouraging them to ask more questions before during and after your medical appointment and in one case have a song and dance spot (wmv file) encouraging patient participation and asking questions:

DOCTOR (spoken): Any questions?
PATIENT (spoken): No.
DOCTOR: You know...
DOCTOR: (begins singing): We're not magicians, we can't read your mind!
BACKGROUND (singing): Read your mind!

Fun video - important points. Questions are the answer. As the AHRQ group puts it you play a critical role in improving your own healthcare and making wise medical decisions. As I heard recently in one presentation - we all need to become our own Primary Care Provider - managing our own healthcare and understanding the choices available to us. As was pointed out in one of the videos - we spend more time asking questions when we order food or buy a cell phone than we do when we go meet out doctor for a check up or clinical problem. No doubt some of this is time challenges faced in busy clinical practices and a degree of intimidation that persists in relation to patients and their relationship with their clinical provider.

Part of the process must include bringing information to the appointment and referring to it as well as extracting as much information both verbally but more importantly in electronic form from the clinical visit. Asking for a copy of your medical record should be a standard request - over time this may become a more electronic activity and even include requests that ask for the record to be sent digitally to your own Personal Health Record. But for now a paper print out is already an improvement and will allow a better understanding of the appointment. There is no better advocate for a successful outcome that you and your family members and oftentimes more time available for you to focus on doing the research on your own condition and understanding of the choices available if not the personal choice to be made. The AHRQ site gives some guidance on questions to ask here - extensive list and not all questions are necessary for all interactions but a good starting point. It's your health - start taking care of it and participating in the process actively not as passive observer.

Had good or bad experiences share them here - maybe your doctor actually volunteers your record and discussion or maybe your clinical office refuses to provide you with all your records. Whatever your experience I'd love to hear from you.

A Facebook Medical Record

What are we trying achieve with medical records....? Asides from the obligatory proof that the care was delivered (billing) and determining how much should be paid for the delivery of that care medical records are about sharing information between care givers. It has always been that way. Years back the number of care givers was lower and specialization less so the number of people needing accessing to the this information was lower. Now with the tsunami of medical information it is impossible for single care givers to deliver all the possible ranges of care and it takes a village team to deliver care.

And the latest explosion on online activity - one who's traffic can exceed that of Google and you tube is Facebook, which according to their own description

...is a social utility that connects people with friends and others who work, study and live around them. People use Facebook to keep up with friends, upload an unlimited number of photos, share links and videos, and learn more about the people they meet.

Now take this concept and adjust the wording.....

FaceBookHealthRecord is a social utility that connects patients with their care givers and others who provide diagnostic services, imaging, laboratory tests, results and pay for that care. Patients and clinical care givers use FaceBookHealthRecord to keep up with the status of their healthcare, their wellness and long term disease outlook as well as communicate quickly and effectively with specialists. All images, diagnostic study videos and diagnostic testing information can be uploaded and shared withe the clinical team allowing everyone to learn more about he care of that patient.

The interaction concept has been tested and reported on - Bob Wachter wrote an article just recently on this very concept "Creating a Facebook-like medical record" where he slams home the point on interoperability

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

Interestingly he points out that the spooks have gotten in on the concept with FaceBook-007 aka A-Space (I am guessing short for Analytical Space...?). Launch is set for Sep 22, 2008. UCSF back in 2003 launched a concept very much in line with the sharing of information amongst all the related parties (notably not the patient in this case) called Synopsis

As with all folklore associated with good concepts it was an rapid victim of its own success receiving requests for access, being copied and installed at other locations by users and even covered on a Web based M&M rounding on the Agency for Healthcare Research and Quality (AHRQ) site

There is work on these concepts underway and even some launches - if you live in New York you can sign up with HelloHealth from MyCA Health group who liked the approach taken by Jay Parkinson (the Hipster-MD from New York- pdf) who launched his own home made system with a similar ideal of sharing information digitally and providing easy, affordable access to patients some months ago. The NHS in the UK is getting in on the act with the "Individual Health Record" and covered in a recent article "Personal Healthcare Management" (subscription required) in my regular column in the British Journal of Healthcare Management.

There is even a Facebook application - MedCommons available today for a subscription plus monthly storage charges. Unfortunately much of what will be transferred in is likely to be scanned images and print outs. The introductory video even shows your physician office receiving access to your medical data and printing it out.....sigh! This will change but for now we are stuck with the legacy information

No doubt there will be detractors and there are bound to be issues and problems but overall you have to like the idea of sharing data on the quickly and effectively with the full clinical team. And there lies a key point.... the information must be be clinical data and should be tagged to a controlled medical vocabulary to make this information valuable for automatic machine processing. But lets not burden the clinicians with entering data in online forms but provide tools that capitalize on clinical documentation and the natural expressivity of language while still creating the structured data that can be used by these connected applications.