I recently got a message from Jerry Theis of MyCrisisRecords. He sent me a story that I thought was a great way to start off the new year. It talks about the value of health care data interoperability and in this case a device and PHR with a person’s health information. Enjoy the story!
Yesterday, one of my members called me to tell me she was taken to the emergency room suffering combinations of complications caused by a rare condition, Polymorphous along with a flare up of fibromyalgia which caused to her go into cardiac arrest. The ER doctors were able to effectively treat her because she had her digital device which provided them all of her medications, conditions, allergies (she is allergic to latex). Because of this rare condition and her acute distress she was told by the doctors had she not had this device there would have been adverse events, medical errors and it would have been fatal.
The ER doctors read the article I had downloaded in the device about Polymorphous. She, the patient educated the doctors who said they had never treated or seen this rare condition. The ER doctors consulted with Mayo Clinic and an expert on Polymorphous consulted with them and spoke to the patient while reviewing the transmittal of her PHR sent to him. She consented to be injected with a drug that had to be sent from Mayo (2hrs). It relieved her of the severe pain and swelling in her throat.
I share this with you because it meant so much to me to hear her testimonial and how thankful she was and how grateful she said the doctors were about what I created. I am a psychotherapist and she is a patient of mine who has a Bi Polar condition. The doctors said they may have had discarded her presentation because of her psychiatric condition had they not had the complete PHR. Another primary reason why I relentlessly developed this technology, for the special needs populations.
While I can appreciate the infomercials of both MyCrisisRecords and MyPHR (and I’m sure the’re true), I believe there are far too many issues which need addressed for any one solution to become a standard today. Anyway don’t we already have medical bracelets?
Most discussions in healthcare today concerning EMR are about how the industry can protect and at the same time make available this information (now digital and very portable) and the difficulties experienced achieving the elusive Confidentiality, Integrity, and Availability (CIA)…
I think the only way patients will control their PHI is to literately and physically have all said information on such an encrypted media that is in their control and exists nowhere else, thus placing the responsibly solely where it belongs, with the patient (hello RFID). Value? I doubt this will ever happen for there are far too much future earnings by services offered or denied in knowing the particulars of everyone’s current and future medical issues. There’s the value!
Shouldn’t we be concerned how the government thinks they can protect this stuff when they have it all?
packets,
I wouldn’t say this was an infomercial since I’m not selling anything and MyCrisisRecords didn’t ask me to post it either. I just enjoyed the story and thought it was a good illustration of the value of having healthcare data at the point of care.
There are a lot of different possible ways that this could be accomplished. Regardless of how it will be accomplished, this is an interesting story about a benefit of it.
Also, what’s MyPHR? I’d never heard of them until you made this comment.
MyPHR? Good question, I don’t know either. I know better than not thoroughly reading my comments before I post…D’oh!
I think I might know where you got MyPHR. I just checked on Twitter and @my_PHR tweeted my post. So, if you found this link on Twitter, that could be why.
This is an excellent example of the importance of patient driven informatics / healthcare and health IT, and it is better than not having anything at all at the point of care or site of an emergency. This patient was helped by the ease of use of the technology and how all current and up to date PHR was quickly made available. The system and device works and adds more than just value to a Health Information Network, it really helps improve the delivery of care, especially when it is most desperately needed. Thanks for sharing John!
That is a great story Jerry & John.
This story makes me think of how Patrick Swayze’s character in Road House had his medical record with him at all times, ready for his next knife fight. While neither the file folder nor the bracelet are sufficient or adequate, they both are steps in the right direction. The MCR keychain fob is cool because you can load it up with relevant articles, it is private, and not expensive. A no-brainer for anyone with any of the 8,000 rare diseases that your ER doctor rarely sees or is no expert on. Any information you can provide to the doctor is helpful!
It’s beginning to sound like support for a national database (and where it appears this country is headed) and eliminating the need for on-site records. It’s clear to me the powers that be won’t allow the individual to be the sole holder of their health information. Then the issue arises with information located at different locations, what to trust? Will doctors continue to gamble with possessing the most up-to-date information at hand? Ah, another case of best effort? In question are not the successes of technology but its failings.
Who will assure the integrity of information on any device when you cannot guarantee its control? There continue to be many of stories where local and regional repositories of EMR are discovered compromised and patients must be informed of a failed promise to protect their information.
We have a long way to go and thousands of hours of discussion before these issues are resolved…WikiLeaks anyone?
I have to say kudos to you Jerry! Like anything else there’s always the question is this better then that and should we rely on such a device. In this case, obviously it saved a life there’s no other way to see it. Keep it simple is still one of my favorite sayings and in this case, it was the difference that we are all trying to make today. Though it’s not to say other products out there aren’t as effective and/or how and when a Physician should trust in such a devise for all. Like anything, we need to open our minds to the possibility that there’s a better way of doing things…especially when it involves inidividuals with psychosis, the elderly, children, or those that live alone simply put. Great article!
I’m with Kathy, “Keep it simple.” If it works, use it! And give your left brain a rest. MyCrisisRecords is genius! I think motorcyclists are a good target market, too!
“obviously it saved a life”–there is nothing obvious about this story. In fact it makes very little sense from a clinical standpoint.
With a significant portion of our population experiencing mulitiple chronic conditions, education of the patient, as well as the healthcare provider, is critical. This consumer-based/focused information system with its ease of use and interoperability, has clearly provided life-saving education in this situation!
What is more important than the “gift of life”?
How could this device not be beneficial to a patient who is unconscious and would have adverse reactions if given the wrong medication? The story above is one scenario with a positive ending. The device is a new concept, people of all levels are septical of new innovations. The importance of this device especially with people who have allergies to certain medication and those with special needs would be of great significance.
[…] Great Story About Value of Healthcare Information The ER doctors were able to effectively treat her because she had her digital device which provided them all of her medications, conditions, allergies (she is allergic to latex). Because of this rare condition and her acute distress she was told by the doctors had she not had this device there would have been adverse events, medical errors and it would have been fatal. […]