Someone once told me that I “write to incite” and indeed, I am thrilled when a post resonates enough to inspire a conversation that often goes on longer and has more nuggets of insight than the original essay.
I’d like to honor the contributions of my community colleagues over the years by pulling out some of their best comments and quotes.
Sally Okun, in response to “Hacking home health care” (2014)
Just the other day I was getting the second pedicure of my life (although I may need to do that again soon) and the manicurist asked what I do. My usual response is that for many years I was a community-based palliative care nurse and now I work for PatientsLikeMe. Usually that all takes a bit of explanation but Denise totally got it – why, because she’s been a family caregiver. First for her mother in 2003 and more recently for her father-in-law. Both at the end of their lives with dementia.
She talked about how much she learned from the first experience and how that helped her in caring for her father-in-law. She talked about the modifications she made to his pants using Velcro and creative use of scissor cuts to the underwear so he didn’t have to fuss with the button and zipper to make it to the bathroom in time – but to make it look ‘right’ she even sewed the button back on. The alternative of getting him sweat pants – which everyone told her to do – just wasn’t acceptable for a man who would never have worn sweat pants when he was able to make his own decisions. She then said something delightful and it stuck with me all day, “I just MacGyvered it!”
Denise reminded me of so many family caregivers I’ve met over the years who were MacGyver masters of creativity and problem solving with simple everyday ingredients and I had a very similar thought – we need to catalog these, we need an app for that!
So I’ll offer a dated alternative title for this post “MacGyvering home health care”!
Ian Eslick, in response to Peer-to-peer Healthcare: Crazy. Crazy. Crazy. Obvious. (2011)
There are many kinds of information that can be gleaned through the lens of science, and not all of them need to be the universal assertions of cause and effect clinical trials emphasize.
This explosion of kind of knowledge and methodologies for acquisition emerges from the intersection of new technologies for observation (personal devices & data mining), cheap computation, near universal human and machine connectivity (observations, peer review and collaboration), and the changes in culture (social games, collective intelligence, e-patients, citizen science) that are rooted in the worth and autonomy of the individual…
Robert S. Gold, in response to “Love Made Visible”
Family caregivers – a recipient’s perspective: This will be a rather lengthy but I hope worthwhile story. It happened at a time when there was no internet and very few relevant information options.
In 1995 I had hip replacement surgery. The surgery went well but I happened to be in the hospital over the July 4th holiday weekend. During that weekend something went drastically wrong – and in the absence of a senior authority what was done cost me two years of my life and my wife one of her most challenging experiences…
Read more from my collection of featured commenters.