Data - Free At Last!

Next time you visit a doctor’s office, try to peek beyond the front desk and you will usually get a glimpse of dozens of metal shelves loaded with thousands of paper charts neatly stacked in conventional library stacks. If you have a chance to walk into the medical records department of a hospital, you will see the same, multiplied by many orders of magnitude, including folks walking around with carts full of paper charts busily putting stuff into the shelves and taking more stuff out, just like librarians do. If you close your eyes and try to imagine what health information technology is doing now, you can almost hear a huge sucking sound pulling all those pieces of paper off the shelves in a big tornado-like swirl, and into the lone computer at the front desk. Play the Walt Disney music score for Fantasia in the background while the steel shelves are swiped clean and medical records are transformed into zeros and ones and swiftly pulled into cyberspace as Data. Then an eerie silence sets upon the room and all you can hear are keyboards clicking away. No more shelves, no more carts, no more paper and very few people remaining. Somehow the computer, which has morphed into dozens of terminals scattered across the rooms, looks a lot bigger now. This is how Data becomes free.

If you stick around a bit longer, a faint trickling sound will start appearing here and there. It will grow stronger and more ominous very quickly. The Fantasia movie score has music for that too. It now sounds like a raging torrent, a waterfall of sorts, and it is coming from the computer. You can practically see the deluge of zeros and ones furiously exploding out of computer screens faster and faster until the rooms are filled with free Data. Free Data comes and goes as it pleases, and for every Byte you released into cyberspace, trillions of other Bytes have been released by others, and they are all coming your way now. In computer parlance, you are experiencing a “stack overflow” – too many zeros and ones to process correctly. As computer folks know all too well, in order to fix the problem, you must first identify its source. So where is newly freed Data coming from and why is it coming your way at all?

The first source of free Data should be very familiar to any health care provider. It consists of previously paper-bound clinical information from other facilities of care. These are the old lab reports, imaging results, prescription renewal requests and the occasional consult note, referral or discharge note. These used to make their way into an office via fax, telephone, regular mail or hand delivery by patients. Instead of being stacked on your desk for review and sign-off, the Data is now neatly arranged in to-do lists or dashboards on your computer, marked with colored icons for Abnormal, Panic or Must See, depending on your software and its particular configuration. Not to worry, the lab will still call in critical/panic results. This is one of the nicest features in EHR software and a true time saver, since you can quickly go through all results, sign-off, forward to staff and release to patients. Electronic prescription renewals, if done right, are also a big improvement on the old fax requests and endless phone calls. Various progress and consult notes travelling uninhibited into your charts can be regarded as a positive development. True, these notes are currently bloated and consist of stilted, computer generated prose, but they should get better given enough time. All in all, having professionally generated clinical Data flowing freely between medical facilities has the potential to be a huge improvement on the status quo.

And then there is patient generated Data, either the manually created trickle, or the automatically created and released flood building up behind millions of mobile devices. No one can argue that obtaining as much information as possible from a patient is a bad thing. The carefully honed art of taking histories and the thorough examination that usually follows, are both aimed at collecting as much information as possible about the patient as a whole person to facilitate diagnosis and treatment. When medical records were chained down by their paper existence, patients’ access to their own records was always mediated by a staff member and required physical proximity to the chart location. As the Data in medical records becomes free, the Data currently stored in patients’ heads becomes free as well, and the two are yearning to be joined.

Several leading EHRs are already allowing patients to access their electronic records and add their own Data, such as histories, and many more will do so in the very near future. The most obvious use of such access is the replacement of the endless intake forms before checking patients in, but patients could also update their Data at will, when things change or when they remember something new. For example, Jane Doe working with the care team on weight loss and fitness could go update the frequency of workouts or note her new all grapefruit diet plan. Someone should check Jane’s long medications list and call her right away. The grapefruit is now part of your chart and part of your responsibilities. So should you have a clinician monitor patient entries into their records on a daily basis and take necessary action? It may save a life here and there, and it may also prevent a lawsuit here and there. [Note to EHR developers: when you provide patients with write access to the chart, you should also provide the clinic with an assignable task list of all updates made in the last 24 hours, with an option to accept, deny or pend the change based on further actions.]

But the most ominous deluge of patient originated data is still gearing up for its ultimate release into the land of the free Data. There are iPhone glucometers, and iPhone blood pressure cuffs and an iPhone EKG device is almost ready to enter the market. There is even an Android application that compiles and analyzes such mundane Data as where you go and who you call or text to figure out if you may be on the verge of becoming sick. All this Data, and probably much more from a variety of sensors and labs-on-a-chip developing faster than mushrooms after the rain, will eventually be set free and find its way into your chart. We are not talking about a few hundred entries a day here, which could be monitored, albeit at major cost, by a human staffer. We are looking at terabytes of data continuously streaming up into the cloud and down into your medical records. It gives new meaning to the term “ambulatory”, since you would be presiding over an entire patient panel connected to FDA approved, ICU-like machinery wherever they go. How many EKGs can you look at every day? What if you miss one and that’s “the one”? What is the value of looking at 10 EKGs from the same “worried well” person every single day? [Note to gadget developers: without a mechanism to review and analyze gadget generated data, and without accepting legal responsibility for generating medically correct credible alerts, you will have a very hard time convincing any medical facility to open their charts to your free Data.]

It is very rarely that when a problem presents itself, it comes with a solution standing right behind it, but this is exactly the case for free Data. If iPhone apps and sensors are about to create a flood of Data, the next generation of gadgets is waiting in the wings to use this Data and divert all headaches from practicing physicians to their patients. The X-Prize Foundation is developing two new challenges. The bigger one is the famous Tricorder X PRIZE which “will award $10 million to the team that develops a mobile solution that can inexpensively diagnose patients by combining expert systems and medical point-of-care data—such as lab-on-a-chip or wireless sensors, provide a recommended course of treatment, and upload all relevant data to the cloud”. The second one is the Digital Doctor X CHALLENGE which “will award $1 million to the team that builds a low-cost, point-of-care expert diagnostics and treatment system based on a computer platform that can be operated by a minimally-trained person to accurately diagnose a range of common, regional diseases”. A combination of IBM Watson software wired to a bunch of the newest iPhone gadgets should pretty much do it. Not only patients will be able to measure everything, but for $9.99 or $99.99, they could purchase a shiny “doc-in-a-box” to take home. I assume that pharmacies will have to honor prescriptions from those devices eventually, and I assume that there will be plenty legal disclaimers to make patients fully responsible for any mishaps.

And if that’s not enough to alleviate your concerns regarding terabytes of free Data floating out there, please know that the X Prize folks have it all planned out. They are considering an X Prize for a Brain Computer Interface, which should make all the difference on how Data is set free and how free Data is processed: “The winner of the Brain Computer Interface competition will be the team that successfully demonstrates a bi-directional non-verbal brain-computer communication. Teams may use an invasive or non-invasive brain transmission device, and may train the human participant in any way they desire.” The future is here.