c) Carolyn P Hartley
My most frequently asked question? Why did you write the book, The Caregiver’s Toolbox? My co-author, Peter Wong and I often change the way we answer that depending on how emotional we get.
My story goes back to 2003 when my brother, Jim and I started saying our goodbyes. He had bravely fought through 18 months of pancreatic cancer, and I have to tell you, my sister-in-law, Eileen, was an amazing soul to nurture him through that period. My brother was a multi-millionaire and a man with an incredible sense of humor. If money was all that was needed, he could have bought his way out of this cancer.
Sometimes the pain was more than he could handle. Weekends were the worst when his wife would rush him to the hospital. Not having access to his chemotherapy regimen, doctors would shoot him up with opiods for comfort. Sometimes the dosages damn near killed him.
In was in 2003 that I made a commitment to help health care professionals transition into electronic medical records, enabling them to access medical information when it was needed most. It was only a matter of time that consumers could use a secure personal health record at any hospital or doctor’s office, similar to how they were using debit cards. Banks could communicate electronically, so why not health care professionals.
Simply put, the foundation for health smart cards wasn’t in place. Patients were stunned that health care professionals participating in their health care didn’t share patient files. That was nearly 15 years ago.
Since then, the United States has invested tens of billions of dollars to be sure patient records work like debit cards, only much more securely.
You are still filling out tons of paperwork when you go see a doctor, and you need to stop that! There’s an app for that. You just aren’t using it.
Are you still going from one drug store to another to see which one offers the best price? You need to stop that too! There’s an app that will do that work for you.
When the federal government hired professionals like me to help build this foundation, they frequently used the word, patient engagement. “How can we get patients engaged in using smart phones or mobile devices as a medical communications tool?” they asked. My response? “You’re reaching out to the wrong audience.”
I said, you need to reach out to caregivers first! Caregivers are the keepers of family, medical, legal, and communication information. They fill out the paperwork, transport loved ones. They need fast help while they are at work. Sometimes they need to pull together an army of helpers, but they need to do it carefully so that the call for help doesn’t get in the wrong hands. There’s an app for that, too!
But here’s the saddest news of all. After spending these billions of dollars, consumers still don’t know what’s available for them. Maybe that’s because you’re expecting someone to hand it to you?
Okay, here it is, handed to you on a silver platter. The Caregiver’s Toolbox. Mobile apps, checklists, spreadsheets, best websites. Get engaged, dear friends. Go find your silver platter.