For 17 years, Betsy Walling Furler and her husband, Eric, have been frantically gathering paperwork. They don't have OCD and they do have jobs.
But this paper chase isn't optional: ever since their oldest son, Henry, was a baby, the Furlers have been on a life-or-death mission to make sure the medical records they have on Henry, who has several serious congenital diseases, are absolutely accurate and up-to-date.
"He was three weeks old," recalls Betsy, "when a doctor nearly killed him [because of misinformation on Henry's health]. That's when I realized that we needed to be captain of the ship."
Thus began a life of escalating stacks of papers and DVDs, and enormous binders to try to organize it all (but how do you organize it? by disease? by date? both? does it need an index? having done that, will any doctor really look at it all and find the right bits of information?). And constant anxiety: was there something they missed? A fact doctors ought to know, but might not?
"Collecting medical records over the years has been extremely frustrating and extremely overwhelming," says Betsy. "I'm a healthcare professional - a speech pathologist - and I still wasn't able to get complete medical records on Henry."
So it was a relief, and an accident, this March when the Furlers found CareSync and finally acquired a first mate on their ship of medical records. Betsy, who works with BridgingApps.org on apps to help disabled and non-verbal children and adults communicate, was working on a new project focused on frequently hospitalized individuals when a co-worker suggested they try CareSync for the new venture.
"I know the CEO," said the co-worker, offering to connect Betsy with CareSync's Travis Bond to learn more about CareSync's medical records retrieval and care coordination app and services.
Betsy didn't wait for the introduction and went straight to CareSync.com, where she signed up for CareSync Plus, the service where the customer supplies the name of the doctors, hospitals and labs - all of them, at least 27 in Henry's case - and CareSync does the rest, generating a digital record and summary accessible 24/7 via web or any mobile device, ready to share with any doctor or anyone else the patient designates.
A few weeks later, Betsy and Travis wound up unexpectedly face-to-face in a White House executive office meeting room with other apps developers in D.C. to discuss issues including patent law reform, data security, privacy, and safety for children online.
"I'm a CareSync user, and I love it," proclaimed Betsy, surprising Travis and White House officials as she pulled out her iPhone and demonstrated how she had all of her family's medical records literally in the palm of her hand, including Henry's, ready to use and share.
That's especially valuable when on the road, because Henry's multiple conditions have him in the hospital about twice a month, and medical decisions could be imminent at any time. Meanwhile Henry - an ambitious teen looking forward to college and more - has no intention of allowing biology to hold him back from the future he's planning. He's using the app to prepare to manage his health when living on his own.
Henry's challenges include medically intractable epilepsy - that is, epilepsy that is very difficult to treat: so far 20 drugs have failed, but an implanted device has brought some relief, shortening seizure duration from about six minutes to a minute and a half.
He's on a special diet to help rein in the epilepsy, and a mistake on that, Betsy notes, cannot be allowed to happen. "If he were given an IV with dextrose," she explains, "he could go into status epilepticus [clusters of seizures or continuous seizure]."
Henry also copes with two other chronic conditions, a neuro-metabolic disorder and dysautonomia, which can cause problems including tachycardia, when the heart beats too fast.
Then there are the allergies: at least 13 that are vital for doctors and others to be aware of. Many of these, Betsy notes, surfaced when Henry was very young, so his parents remember, but he doesn't. But even though he's a frequent patient at the hospital, every time they check in they get the same old questions, including: What are the allergies? What happens if he's exposed to any of those substances? What medications is he taking?
"Now," says Betsy, "I just show them my iPad, everything is spelled correctly, it's got the exact dosages - they love it."
The Furlers also give high marks to another CareSync feature: the summary we create describing the patient's overall situation at a glance (also very popular with the doctors, medical practices, patients and caregivers served by our Chronic Care Management program).
"I love the summary," says Betsy, who like many patients and caregivers has written a few of her own in the past. The difference with CareSync, she notes, is the objectivity. "When you're looking at things through your own lens, you can forget to mention things that are familiar to you but might be important for others to know."
For Henry, who's paying more and more attention to safeguarding his own health, vigilance is not new: he scrutinizes every pill he gets at the hospital, and won't take them until he knows what they are and how he's supposed to benefit.
The app's usefulness for Henry, a junior in high school, goes beyond the hospital setting. Instead of his mother constantly reminding him to take his meds, he can use the app's medication reminders. Betsy doesn't mind reminding him, but thinks the app's text message reminders are a good solution for a busy teen. "The nagging - it's annoying having your mom constantly asking if you're okay... we're really working towards his medical independence."
We're so pleased to be able to help Henry and his family on their journey, and look forward to hearing about his future triumphs.
Photos: courtesy of Betsy Furler. Top: Betsy and Eric Furler and their sons Henry (left) and Sam. Middle: Betsy on the job as a BridgingApps.org speech pathologist, using apps to help disabled children and adults learn to communicate. Bottom: Henry and Betsy were speakers at the 2015 SXSW conference in Austin, Texas, talking about apps as tools for medical independence and for the transition from high school to college.
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