Over the years my mom has watched out for a number of family friends and helped them as they’ve gone through the care continuum (home care, senior housing, doctors, hospitals, and then hospice). She was having challenges communicating with the caregivers, coordinating care, and playing phone tag throughout the day. She works full-time, so all of this is on top of her normal work load.
She’d be in a meeting and get a phone call from a caregiver. They wouldn’t leave a message because they were concerned about HIPAA, so my mom would have to make the decision of getting out of the meeting to take the call or playing phone tag after the call. She had no idea if it was something urgent or something routine. If she didn’t take the call immediately, she would spend the day playing phone tag with the nurse. I asked why they didn’t email or text and it was because of concerns over HIPAA.
She would also run into the challenge where the caregivers would call with an issue that had started small, but they waited to call my mom until it had escalated and was a major issue. If she had insights into the daily care that was happening, she could have seen it at the start and prevented it from becoming something bigger.
This was also the case with bigger medical conditions. Various nurses would be taking vitals and charting them, but gradual declines in condition would go unnoticed until they were major. There was one time in particular when our friend had lost about 20 pounds over the course of 2 weeks. The nurses took daily weight measurements, but nobody had tracked the trend to see the change. It didn’t happen until my mom visited and noticed the visual difference. She and the nurses then reviewed the charts to verify the change that had occurred, causing the nurses to realize there was a problem with the diuretics that could lead to a re-hospitalization. If my mom hadn’t caught the change, it probably wouldn’t have gone noticed until it required that re-hospitalization.
Mom has repeatedly had to contact doctors to find out what happened because our friend couldn’t or wouldn’t relay all the details. She has to get photocopies or printouts from the caregivers about what they’re doing. The elderly with chronic conditions don’t usually have just one doctor and these doctors aren’t communicating with each other, so she had to keep a manila folder with all of the records and keep it with her at all times so she could answer any questions that could come up. Then my mom also has to communicate all of this out to the friend’s family that is spread out throughout the country. This means more email chains and more phone tag.
It goes without saying that everyone wants the best care for their loved one and they are willing to be engaged if they are given the opportunity to do so….and if it’s convenient.
Our family has had the benefit of having good caregivers and doctors for our loved ones through the years. They do their best to provide the best care possible. The problem is that each doctor and caregiving agency (home care, home health, senior housing, and hospice) has their own record. These records are in silos that don’t talk to each other and it is time consuming to get access to them.
Even with proxy access to an electronic medical record (EMR) portal, mom still has to go through the lengthy process to get the access and then remember the login credentials to all of the different portals. Some of the doctors are embracing messaging through their EMR, but for most of the care continuum it is still faxes and phone tag to ensure HIPAA compliance. These caregivers and doctors are also dealing with enormous patient loads. There aren’t systems in place to automatically notify them if there is an issue that needs to be addressed.
To me it became simple. Create a single, centralized health record that pulls in the information from all the care stakeholders. Add role-based security so that you could invite anybody, but be HIPAA compliant and restrict medical information to only those with medical permissions. Make it easy to use for anyone. There are a billion people using Facebook, so mimic much of their design so people intuitively just ‘get it’. Eliminate barriers to access by making it free for families to use. Make it helpful for professionals by not disrupting the work flows and adding additional features that can positively affect their bottom line.
CareTree is a centralized, coordinated health record that’s as simple as Facebook to use.
It’s free. It’s easy. It’s live. We’re continuing to improve it and add features every day, but there is no reason to not start using it today. Whether you’re a family watching out for a loved one or a professional with a long list of patients, you can start using it today. It doesn’t require IT or complex integration. Create a profile and invite others. Let the families complete the details if you’d like – they want to be empowered. If you’re a professional and want it tied more directly into your system, let us know and we’d be happy to go down that path. And yes, my mom is very proud of what we’ve done.
You might also be interested in a short video on Mrs. Claus’ insights into the challenges of caregiving for Santa.