Family care coordination, with visuals
Can we stop telling our family members’ health stories over and over?
For much of my journey with Pictal Health, I’ve worked with folks (to me, “clients”) who have very complex health histories. I’ve helped them map out what happened on a timeline, prep other visuals to tell their story, and organize their thoughts for upcoming appointments. Normally these have been people with unsolved or confusing issues that don’t fit a clear clinical picture; many were dealing with post-acute infection syndromes such as Long Covid, Chronic Lyme, or Chronic Fatigue Syndrome. As someone with a history of strange symptoms and complicated immune issues, I understood their desperation to be heard and find answers.
Over the years, others have expressed interest in using these visuals to help coordinate care for a family member, such as an aging parent, a spouse, or a child with medical issues. This has always made sense to me, but in the past I have been more attuned to the unsolved mysteries, the people like me.
Now I see things differently. In the past year, one of my parents received a cancer diagnosis and is going through intensive treatment; another took a terrible fall down the stairs, had a subsequent hospital stay plus multiple surgeries, and now has lingering pain. Their situation would be overwhelming if just one of them were having health issues; with both at the same time, everything is compounded. The sheer number of appointments has them working at least a part-time job. It’s chaotic and exhausting, and it takes up a lot of mental space.
As we kids are spread across the country, we haven’t been able to help as much as we’d like. We try to keep up, but the story gets muddled as treatment plans change, and my parents’ understanding of the treatment plan changes.
There’s a specific feeling of helplessness when a loved one is having health problems. There’s only so much you can do, especially from a distance. My parents are in good hands, and they have a wide network of friends who are eager to help; but we need to be prepared to be on-hand in an emergency. And to be effective advocates, we need to deeply understand their story.
Over at Pictal Health, we (me and Chris) have been inviting our first few ‘Alpha’ users into our digital health history timeline product, Pictal App. I’ve been watching each person get started and learning how we can improve.
I went through this process with both of my parents, helping them complete a full timeline of their history. We’d done this previously on paper, but once I saw their interactive stories on the screen, representations I could easily update in real time, a switch flipped in my brain; it suddenly felt acutely important to make sure the whole family could access them.
That way, any of us can edit our parents’ timelines. And if one of us needed to travel to help coordinate their care, we could either present their story from a screen, or download a PDF to print or upload to their record — features that already exist in the Pictal App.
It’s part care coordination, part freakout management. Knowing that our parents’ back stories are digitally accessible helps me feel more secure and confident, and it gives me some small feeling of control: ‘it’s there if we need it.’
And of course, if we do need these visuals, I expect that they would save us from having to repeat the story over and over, as I have seen with my clients (and myself.) There is a lot to say, at least for the parent who fell; here is what the whole story looks like, with the words removed:
The fall is just a small part of a larger health journey that has been unfolding for decades. It would be extremely challenging to articulate this saga in words, in a quick clinical encounter. There’s not enough time, and we’d be certain to forget something important.
I know many of you are also starting to care for aging parents, whether remotely or in-person. What do you think about this approach?