I know I am fighting a tide of folks who like to hold on to paper and feel reading a book cannot be done unless you are holding paper printed with ink but they said similar things about letters which have been replaced (love it or hate it) by e-mail. As it is, our library system is struggling and children's school text books remain an exercise in frustration of obsolete texts that contain markings, answers and missing pages and cost parents money each year. But it's healthcare where we can "slay the paper dragon"
Healthcare is the real paper dragon to slay, and the Americans might even live longer if we acted. The National Institutes of Health and other leading institutions could more effectively distribute medical information to doctors and patients alike, and the sick could use the same machines to monitor treatments and juggle around pills, not just track the financial details.My own parents struggled with drug therapy creating a spreadsheet (well actually this was created by my brother and loaded up ready for updating by my mother) to track the multitude of pills, times and dosages necessary to comply with physician directions. Simplifying these instructions and sending them digitally in a form that can be consumed in an iPad like machine (to be clear this could even be a PC but the advantage of the iPad is the instant on, instant connection to the internet and reasonable compromise between screen size, use usability, mobility and portability) would be very attractive to many seniors struggling with their own treatment.
The cost of the Healthcare paper work mountain exceeds $1,000 per person in America so anything that attacks this problems is going to be desirable. But what David Rothman is referring to is not just about the technology of presentation but the underlying transportability (semantic interoperability) and he refers to the "magic of web links and facts consolidated via XML Based Technologies". Unfortunately the challenge for the current system is reaching that point of interoperability (Standards and Interoperability) given the history of paper and the wide variation in representation of diseases, drugs and therapies (they told me when I first went to medical school that learning medicine was equivalent to learning a new language in terms of the added vocabulary required to communicate with my peers; in fact Latin used to be required for any student wishing to study medicine - you can see some of the Latin terms in medicine here). Normalizing these terms and extracting the data is the challenge facing healthcare . There is a clear need for narrative in communication - this is how clinicians best communicate clinical information amongst the team and indeed to the patient (as can be seen here) but clinical systems and the EHR need data, but data input is difficult. Bringing these two worlds together is the thrust of clinical language understanding combining Natural Language Processing technology (NLP In Healthcare) with the emerging world of digitized medicine. David wants to
let patients themselves play more of a role in policing our health system, thereby lowering costs while actually taking up less of their time, thanks to the right automationand they will (and must) but we have some significant steps to take to achieve his vision of dashboards and the easy and rapid sharing of information. At this point any small steps is good news (every journey begins with but a small step) and the simple process of e-mailing patients actionable health tips based on the doctors finds may seem mundane but its a start.
For now we have to deal with the existing system, navigating the insurance nightmare of cost and denials all the while trying to keep up on treatment plans, drugs and therapies and if you are like me not just for yourself but for multiple family members. For now in lieu of an iPad
- Get a full copy of your medical record
- Get everything in digital form if at all possible but if not in printed form - you can always scan and convert to a PDF document with text using optical character recognition (OCR)
- Get a copy of your problem list including an explanation for things you don't understand
- Full listing of drugs as well as ones you have taken in the past and stopped
- Get your X-Rays again in digital form on CD is good but failing that get the actual films
- Educate your self on your condition(s) - be an expert
We all face the same challenges but starting with a full set of information helps everyone. Over time doctors will be able to produce clinical records that contain the full story for the patient that includes the narrative and the data to help automate some of this activity. In the meantime you need to be part of the solution that coordinates your care.
Had good experiences or bad - let me know. Seen your records - what did you think? Was it useful to have your medical record?