“Frustrating it is; says Yoda”; that 2014 did not pre-date 1997. I had much more energy in 1997: Perhaps too much.
I reference 1997 as the year that I departed my work as a clinical program manager to work in e-Health. We didn’t call it e-Health then. Although Electronic Medical Records did exist; they were isolated to large hospital-like institutions such as the VA Medical Centers’ and were not designed to provide the functions available through modern ‘electronic health records’.
Many of us “early adopters” of information science could not understand why it was possible for Domino’s Pizza to maintain a record of our eating habits and deliver hundreds of pizzas to a locality throughout each football-weekend without a hiccup.: 1) pick up phone, 2) call nearest Dominos, 3) declare name and address, 4) authorize payment, 5) pace the floor for twenty minutes, 6) protect the delivery person by fending off eight hungry men from grabbing at the steaming-hot (well sort-of) pies in his hands and 7) laugh hysterically at your friends as they spill tomato sauce and toppings all over your ‘state of the art’ 300 pound 37” Big-Screen-TV.
You see, we could not understand why Domino’s had this technology; let alone the banking industry’s ATMs and long-time regular consumers of health services could not 1) count on the pharmacy ability to refill prescriptions without error, 2) count on hospitals and physician offices to keep our administrative and demographic information consistent between different clinics let alone the information most likely to cause therapeutic misadventure if not ported between points of care (allergies, chronic conditions and problems, medication dose schedules, history of procedures performed, emergency contacts, ETC.).
Those of us working to coordinate care and educate patients and families on the topic of Disease Self-Mastery commented “year after agonizing year” that “information is good medicine”; “missing information causes premature mortality” and “redundant information is expensive in both time and money”. The inability for a patient’s medical history to be stored for quick access and accurately portray the bio-psycho-social status of a person with chronic disease caused our clients to be branded as “revolving door patients”. Those who could not manage their own health-needs and were the reason for an exponentially rising National health care cost that policy-makers used to threaten future funding of our programs as we worked figure out the secret of the “secret-sauce”.
In 1997: Those of us attempting to manage our own disease, spent ridiculous hours each year documenting, forwarding, reviewing, speaking with new providers and writing checks to literally stay alive and productive for our families and employers.
Well, I would like to say it is all fixed! After-all, in 1997 we were in the era of the information technology bubble and the implementation of the World Wide Web so we left our clinical careers to work with “the geeks” to carve out a solution. We thought it would all be in-place by 2004! The problem you see; was that it took at least a decade to figure out what “the IT is” and what “the IT isn’t” and in –reality; in 2014 we realize that our issues were more related to “a social paradigm-shift” as opposed to the absence of technology. We are probably 50% there in terms of definition. We are 100% there in terms of technology and 25% there in terms of defining the rules and use-cases for the capture, digestion, analysis, transmission, and relevance ranking by work-environment to attaining the possible impact on e-Health to our collective experience, quality of life, safety and economic impact.
This year however is a turning point for us consumers that are the BIG-SPENDERS. By now you should note that your medications are ‘mostly (with sheepish grin on my face) correct between providers and that we can at least digitally sign and forward administrative and clinical documents between providers in milliseconds as opposed to weeks. Persons with diabetes, cardiovascular disease, cancer, asthma, head injury, auto-immune disease should be able to log-on to review all relevant clinical monitoring information, securely dialog with physicians and family members, download and upload data from home testing equipment, request refills and perform research whenever we are at Starbucks. There are some security glitches but if I can risk sharing my smart-phone with a shopping app. I can certainly use it to help me manage my healthcare.
I am retired now, slowed down enough to be ‘coined’ disabled but juiced-up enough to spend the foreseeable future gathering ‘consumer-power’ with my fellow ‘e-patients’ as part of this ‘e-society’; shouting out with my friend Casey, he nature of our needs and declaring the economic value of the products and services. After all, it is our game to change: Isn’t It!
PS: I do not have enough time and energy keeping-up with my blog. I do my best and return occasionally with a cerebral burp of two. This is because finally, the world has a place for us: I am active as a volunteer with the Patient-Centered Primary Care Collaborative and make an extra buck or two pursuing a dream: The Diabetes Eyesight Preservation Program; where one patient convinced three physicians to treat anyone who needed treatment regardless of ‘ability to pay’!
Well, to be truthful: “They asked me what I was going to do with all of my time (tee-hee).”