From J D Faccinetti co-founder Pituitary World News – This is the first in a series of articles where we discuss how technology can affect medical treatment for pituitary patients. Click on this link or on the link at then end of this article to participate in a one question poll about medicine and technology.
Lately, I’ve been reading about medicine, care and technology. This is a subject that interest me greatly because it can have a great effect on how care is provided, particularly for those of us touched by chronic conditions like pituitary disorders. So, maybe this is something where we should all direct some of our collective energies.
As is typical with the great majority of pituitary patients, we see more than one and sometimes many specialists as we deal with our disease process and the many other conditions that can come with it. Often, one doctor has no idea what the other is doing making the whole experience utterly frustrating, not to mention inefficient, expensive and, I would also venture to say, dangerous.
The sausage making
But what really has been filling my sails, so to speak, is that it seems the process of coming up with a common sense system to resolve these issues has reached another set of hurdles. We are now enthralled in an interminable discussion about connecting health records and patient clinical information so, God forbid, doctors can all play from the same sheet of music. It should all work like a symphony orchestra. I’m referring, of course, to the EHR (Electronic Health Record) initiatives, which seems have been bogged down in the typical inefficient bureaucratic back and forth, and with no end in sight. To make matters worst, every “expert” that tackles the issue focuses on giving us reasons why it won’t work.
Several highly respected institutions Harvard University, Wharton, University of Pennsylvania, Stanford and others have raised some doubts about the potential cost savings, particularly in small physicians practices. The latest rounds of blockage seems to also have included a group from the AMA (American Medical Association) that is asking the feds to re-do the EHR testing program claiming that the current “MU (meaningful use) certification has become the priority in health information technology design at the expense of meeting physician customers’ needs, patient safety and product innovation.” I can only guess these are the small practices I was referring to earlier.
I’m not going to bore you with all the details, but there are also a litany of other concerns ranging from software quality and the potential for input mistakes and omissions to data transmission errors, security measures, privacy and confidentiality breaches, ethics issues, HIPAA regulations, not to mention the mighty liability concerns, hackers, natural disasters, technology fails, as well as general concerns about how the doctor patient relationship would be affected. And, in the areas where health organizations have been willing to exchange information, those efforts have been derailed by incompatible standards and computer systems. You wonder how any progress is actually possible.
After reading some of these reports one gets the impression that these common sense initiatives will never happen. You have to ask yourself if anyone is actually looking out for patients or, most importantly, if any patient organizations are involved in any of these research studies and reports?
The good news
But it’s not all mayhem and there has actually been tremendous progress. A recent MIT Technology Review magazine article “Can technology Fix Medicine?” tackles the issues related to big data and the ability of applications to make that data actionable. Technology companies like Apple, IBM and others are getting into the game. Importantly for us, data can and is changing our level of education and awareness of our respective conditions, and it is allowing us be more involved in our care decisions.
Nannette Byrnes writes in the MIT article:
After decades as a technological laggard, medicine has entered its data age. Mobile technologies, sensors, genome sequencing, and advances in analytic software now make it possible to capture vast amounts of information about our individual makeup and the environment around us. The sum of this information could transform medicine, turning a field aimed at treating the average patient into one that’s customized to each person while shifting more control and responsibility from doctors to patients.
Perhaps we are shooting for too much at once and trying to solve every conceivable potential problem in one swift swoosh. Maybe we should start with baby steps: for example: how about a lab test supplier, let’s say: Quest Diagnostics, provide electronic lab test results to more than one physician at a time, if the patient requests it? That, seems to me, is as easy as copying someone on an email. Or, as some systems already can do today, allow patients to access lab tests on a mobile device and patient portals so you can pull them up when you are meeting with a doctor. I was recently seeing a doctor for a bout of arthritis and used “My Chart” the UCSF system to show the results of some of my latest test regarding my acromegaly. Now that was great! On the other hand, I recently tried to get lab test results from the Quest portal all to no avail. The process was quite confusing and convoluted. Patients should have easy access to their own information and use it to manage their conditions and relationships with their doctors. We should be able to reach our medical information with the same ease we reach our money in the bank.
Let’s get involved
Maybe more communities like ours should jump in on the discussion, suggest the type of common sense small initiatives that can make a difference today and lead to big, large scale solutions tomorrow.
It’s time we hear from you, the pituitary patient. Get involved! Click on this link to give us your input and stay tuned. More to come!
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