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Jenny’s Corvette is 25 years old, in cherry condition. This week the engine was making a throaty rattle so she took it in for repair. When she met with the service advisor, she was in a rush, so just said, “There’s something wrong with it”, and left the problem for the mechanics. When she returned, she was presented with a large bill to repair a faulty warning light she previously told them she'd live with. She specifically asked that be noted in her records having replaced it 3 times,with the expense of removing the entire dashboard to do it ridiculously high. But, nobody looked at her records. Unfortunately, the throaty rattle in the engine was still there.
Roger, on the other hand, brought in his vintage Porsche with a list of problems, his copy of the complete service records, and a list of parts which had already been replaced and when. The garage analyzed the Porsche and called Roger with the results. Something didn’t make sense to him, so rather than going ahead with the suggested repair, he questioned the evaluation. Sure enough, the diagnostics were for somebody else’s car. They located the correct records, reported the appropriate diagnostic results and recommended the fix. Later that day, Roger drove off minus the whining sound that brought him in.
Was the mechanic a little annoyed at Roger’s involvement? At first, yes. But over the years he realized that Roger’s involvement actually made it easier for him to pinpoint and fix problems, resulting in customer satisfaction. Should Roger have continued asking for what he wanted even if the mechanic was annoyed? Of course. It was his car, not the mechanics. And if annoyance continued, it would be a sign to change mechanics.
So what do these car stories have to do with your health? Aside from the fact that most people take better care of their cars than their health, you can easily see how being involved in the care of something can produce a better outcome. It’s a very simple model to follow. Whether you are sick or well, any time you interact with the healthcare system, it’s important to be your own advocate and take an active part in your welfare. If you are caring for a loved one, the same holds true on their behalf.
I recently attended the HIMSS14 (Healthcare Information and Management Systems Society) convention and learned that the healthcare world has made great strides in digitizing our health records and creating a myriad of devices to make these records available to, between and among our medical specialists.
A bad news/good news scenario.
While you may not feel sorry for doctors, the down side is that some docs now have so much information coming at them from so many sources that they are on overload, stressed and tired. Personally I prefer a stress free doctor. Some are leaving the profession early because it’s just too much computer and too little patient. Also mistakes in the records occur - and always will. Recently one of my docs said I should avoid a certain medication because I'm a diabetic. I assured her I'm not, but someone put it in my computer records and it took two months to remove the error. And, while caring for my late husband, as shared in my caregiving book, it was not uncommon for him to receive test results which didn’t make sense to us. The medical folks insisted upon the accuracy; but after retesting, we found our instincts were correct.
Good News?
The potentially good news is that now we also have access to our medical records. Applying the Frances Bacon adage, “Knowledge is power”, if one is involved in and engaged enough to access and use this information, it is empowering. It helps put us in charge of our own destiny. But I say “potentially good news”, because the way this information is handled can be problematic. According to HIMSS Europe, Germany and Austria tried programs involving IT-empowered patient-consumers. Unfortunately, there were so many privacy codes for patients to remember that they were either not willing or able to memorize them, so didn’t use the system. That combined with German doctors going on strike because the new system resulted in such long work days, the programs failed. Though access was eased, philosophical questions remain, there and in the States, as to the wisdom of putting the patient totally in the driver’s seat. Because of a perceived need to protect the patient from himself, there is a movement afoot to stop the patient from this access. Also there are practical questions about whether patients will continue to reveal private medical data if those records are accessible to so many people and agencies.
With potential downsides and remaining questions, should we continue to pursue involvement in our health care?
Dave, whom I had the pleasure of meeting at HIMSS14, is like Roger, except the Porsche in this case is – well – Dave. Almost dead from cancer, he became involved in his own treatment and lived to tell. And tell, he does. Dave deBronkart is an engaged/empowered patient; or one could say THE engaged/empowered patient. In fact, he’s known as “e-Patient Dave”. He is the author of “Let Patients Help! A 'patient engagement' handbook – how doctors, nurses, patients and caregivers can partner for better care". He speaks on TEDx where you can learn his entire story.
Engagement and Empowerment
Dave defines engagement as being “involved, active” and “responding”, and empowerment as knowing what you want and speaking up. Accessing your health records and medical information from professionals provides just part of what you need to be an ePatient. Among Dave’s suggestions are gathering information from the internet and people who have gone through similar medical issues.
Dave identifies 10 Fundamental Truths about Health and Care, and provides Ten Ways to Let Patients Help. Probably the most famous contribution is his phrase, “Gimme My Damn Data”.
To answer my earlier question, “Should we continue to pursue involvement in our health care?”; certainly!
Become an ePatient or an eCaregiver.
If you are a caregiver, have a collaborative conversation with your loved one. Does he wish to be his own advocate, would he prefer you do it, or will working as a team serve him better. Do not jump in as the eCaregiver when it isn’t welcome. As I’ve said in my book, it’s your loved one’s disease and their right to determine the course they and it will take. But when you’re given the OK, jump in with both feet and be their ePatient by proxy. If neither of you are willing or able to take on this role, find someone who will. If your doctor were sick, you can bet he or she would be an ePatient rather than sit back and let others run the show. As a car owner you already have the skills to do this. Now all you need to do is decide if you’re at least as important as your car!
