I recently spent an afternoon with a dear relative who is being treated for cancer. Her medication regimen is so complicated that my mom, an experienced caregiver, visits her daily to help sort all the different pills into all the various boxes (and make sure they get swallowed). They showed off three health care hacks that they’d come up with:
1) A weekly meeting to go over the pill supply. I snapped the photo above, but blurred it and cut out the 2-pager my mom uses as a checklist. Note the use of clean surfaces to sort the pills — cutting boards and saucers. During this meeting they agreed that they need an upstairs pillbox (for pre-breakfast meds) and a downstairs pillbox (for the rest) because otherwise she forgets to take the early-morning pills.
2) Our relative recently had a port placed and she needs to keep it dry for 10 days. A friend brought over a handy roll of plastic wrap she bought at a hardware store and showed them how to wrap the area so she could shower.
3) When it’s time for a nap, they take the phone “off the hook” (for mobile-only readers that means they get a dial tone on their landline and then don’t actually make a call). The noise from the phone is pretty loud at first, so they came up with the idea of placing it inside a sauce pan with a lid. Instant silence.
These tricks are very simple but have made my family’s management of this new situation so much easier. How many home health care hacks are out there, unshared? What can we do to spread these simple little innovations? Four in ten U.S. adults care for a loved one, either an adult or a child, so this is a market worth paying attention to.
Here’s my original post on this topic, along with the stellar discussion that followed. I am going to continue to shine a spotlight on it until it’s a widespread conversation and I hope you’ll do the same.
Instant brilliant. Love. Must build a library – nay, a database of them. Searchable, browsable! Pinterest with tags??
Yes! We need something like a database that is as easy to use as Pinterest and allows people to comment/rate items like Amazon.
Christy Canida of the (amazing) Instructables site pointed me to their Assistive Technology channel. But they need someone to champion it and grow it. My desired superpower is to be in two places at once, but until then…
Here’s another great DIY post:
A Do-It-Yourself Pancreas System, by Dana Lewis
Time warp: I just ran across this post in 2018 while searching for hacks, for @LuisLuque’s LinkedIn post about the Coolture cooling vests for MS patients (created by a clothing designer who got MS).
“Another great DIY post: DIYPS” … hoo boy has THAT one taken off! For those who don’t know, it’s grown into
DIYPS.org | #WeAreNotWaiting to make the world a better place, the patient-created open source technology has gone BONKERS in improvements.
As the OpenAPS site says, four years after that original post, today there are 725 users, each of whom made their own DIYPS gear. (This is a home health hack, not a product.)
On Luis’s post I will link to all your pages that include hacks, and of course keep looking. If you think of others (maybe there should be a “health hacks” category?) let me know…
Yes a great DIY. So, how do we collect resources for patients…especially Newbies? These are all great tips.
That, my friend, is the $64,000 question. How to scale this? I know there’s an answer. We just need to find it.
A start could be pinterest to get something out there, but that is only really helpful for images but could work if linking and tagging were done to drill to the right place and get traction of ideas/submission. Delish works for “word” based articles. Hmm… Standardized curation is the key to any initiative of this nature. So I take it between #S4PM and here no one knows of a site/collection of this nature? Another Hmmm…good be a cool and interesting project…thinking…
Love this post. I’ve been a caregiver several times and these little tricks make such a huge difference. If I think of any relevant examples, I’ll post them here :).
Please do! I was so pleased that my mom & cousin (ages 70-something and 80-something) “got” what I meant by the word “hack” — the original meaning of “an appropriate application of ingenuity.”
(btw because we’re friends and although it might make you blush: a guy who has been a caregiver, who embraces being human and real and caring = sexy. Maybe this is the image make-over we need for caregivers!!!)
It’s hard to make someone with darker skin to blush, but you’ve done it ;)…thank you for the kind words.
Not really a hack, but an asset for caregivers who aren’t always on site, we’re considering using freeconferencecall.com so my mom can include us in her medical team/oncologist meetings.
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Very cool. To me, that counts as a hack. We need to define it broadly. There is too much good stuff out there to take advantage of in new ways.
So, if we’re going to count FreeConferenceCall etc, we should certainly include CaringBridge and CarePages and CareFlash and LotsaHelpingHands.com.
Using Alan Kay’s definition that “technology is anything invented after you were born” then I say we define a home health care hack is “anything that you didn’t know about before that could make your life easier or better.”
A transfer board, like a bridge from wheelchair to sofa … bed … toilet, is one of the best inventions, EVER.
Awesome. I just did a quick YouTube search and found this how-to video – and many more.
I want to say that there’s IMMENSE value (from the PATIENT/FAMILY’s perspective) in ANYthing that makes it possible for the patient to be independent, even for one extra moment.
When I had an almost-broken leg (from a metastasis) and then a repaired-but-not-strong leg, there were some things I could do on my own with a crutch and some I couldn’t. A “couldn’t” was get in the shower, even though it had a bench in it: couldn’t safely get over the ledge. We went to Target and got a barstool with swivel top. I could sit on it outside next to the shower, pivot, move my good leg in, grab the bars, and swing my butt onto the bench. At last, I didn’t need my wife to help me shower.
Since caregiver strain is a Big Deal, that barstool hack didn’t just help me- it relieved her.
Susannah, I of course LOVE this post!
It does make me think of the LifeHacker website…I could envision a caregiver hacker website. Also, I like the model of the Dummies books…there is something nice about not having to browse a website and instead being able to just start at the beginning and keep reading.
Caregivers have to do SO much. It’s definitely a challenge to think of how to make the information findable, once it’s out there.
Whoops. Just looked at your previous post on caregivers hacking healthcare. (How on earth did I miss that? I think I’ve now correctly signed up for your blog.)
I see you’ve already mentioned LifeHacker 🙂
I am still musing over how to organize communities, esp re questions of diseases, disease groups (i.e. cancer), and things like eldercare vs caring for child/younger adult vs cancer (which encompasses them both)…
Thanks again for nurturing this conversation.
Thanks, Leslie! I’m still musing too, as are a few of us, I think, simmering it on the back burner. There just HAS to be a way for this to work across and among conditions, life stages, etc.
This just in from the UK (via Kathi Apostolidis in Greece):
Harness of hope: Invention from mother of wheelchair-bound son helps him and other physically impaired children walk for the first time
http://www.dailymail.co.uk/femail/article-2588157/Harness-hope-Invention-mother-wheelchair-bound-son-helps-physically-impaired-children-walk-time.html
Thomas Goetz wrote a lovely post on the Iodine blog that is apropos:
#MyMeds: 9 Stories We Tell Through Photos of Pills and Medications
I’m pasting in my comment here since I was thinking of this post as I wrote it:
Visual learners unite!
There is so much to talk about here — how the iPhone (and others) allow us to snap crisp, beautiful photos; how Instagram (and others) allow us to share those snaps, how Twitter is becoming a more visual platform but still (to me) functions best if you add a little text, esp. a hashtag (which functions as a spotlight, a community all-call).
The internet is reconnecting us in ways we haven’t seen happen in 100 years when we all lived in either multigenerational households or tightly-squeezed tenements. We want to learn from other people but we also want our personal space. “Show me, but don’t cough on me” is the new Zeitgeist.
/end of comment/
I feel so hopeful when I see examples of how technology is reconnecting us. Think of what we could do if we leveraged the right tools and got the right people involved! What do you all think?
> I feel so hopeful when I see examples of how technology is reconnecting us.
Did I ever tell you my story about this, circa 1992, via author Robin Williams of The Mac is not a typewriter fame?
Long (sanitized) story short, she was asked to speak at MacWorld Expo on how computers were putting distance between us. She saw the opposite, just as you say: things like AOL were starting to let people connect again (or for the first time) despite long distances.
Boy, would you two would get along! But she’s in Santa Fe, I think.
p.s. Check the Real Bio page on her site….
Wow. I’ll say it’s real. Thank you!!
Hi Susannah,
I recently wrote about a new service called PillPack that is trying to help people like your family member:
https://smallbusiness.yahoo.com/advisor/blogs/profit-minded/startup-wants-deliver-happiness-packets-pills-213940572.html
Fantastic story, Adrienne! Thanks so much for sharing it. I didn’t know PillPack’s back story — makes it even more appealing to me. Do you know the story of the Auvi-Q, a new epinephrine injector designed by two guys who grew up hating their awkward Epi-pens? Here’s the story:
http://www.nytimes.com/2013/02/02/business/auvi-q-challenges-epipen-with-a-new-shape-and-size.html
Okay, wow, these guys are about 20 minutes from me and I never heard of them, and I LOVE LOVE LOVE what they’re doing: applying modern technology (not even THAT modern) to eliminating many sources of errors in a single swoop! Gotta go meet ’em!
Everyone who hasn’t clicked, go to the site and check it out. How “un-pharmacy” is this?? https://pillpack.com/
I think PillPack looks great, but what happens if the clinician recommends a change in medication, esp if the change is provisional (which most shd be; need to see the effect of the change before making it “permanent”).
I often have to tinker with people’s meds…for instance I might recommend they reduce a BP medication, or we might be trying to figure out how a given med relates to symptoms and side-effects.
I actually think good medical care should have more of this tinkering in partnership with patients & caregivers, but logistically it’s difficult.
When patients have a Mediset, every medication change becomes much harder, because someone has to pick out the pills in question and change them.
However, if you are on a stable regimen, something like PillPack does look much more convenient & likely is safer too.
Hm, Leslie …. so, will we ever see an on-the-fly home pill-mix dispenser? “It’s 3 pm – spit me out the moment’s batch”?
To allow “proofreading” the thing (an iPad? or paper?) could display what the mix of pills SHOULD look like.
btw, this subject evokes what @Stales and I submitted to the Blue Button CoDesign Challenge: Make it EASY to manage my pillbox! That recounts the epiphany I had 6+ years ago about how beneficial it would be if all that data were open. (That was before ARRA/HITECH was even passed, never mind the Meaningful Use regulations that now require the data sharing that make PillPack etc possible!)
Not sure just how to solve the problem. I think frequent changes to the medication regimen must affect a lot of people though.
In talking to a patient’s care manager today, I realized there’s another problem that maybe PillPack or others can solve: a database of medications taken in the past.
As in, I often ask patients and families “Has she ever taken this med before?” People often struggle to answer that question, but we should be able to easily search our medication histories to answer it.
This is priceless – allergic 8 year old sends allergic Orioles pitcher his Auvi-Q to autograph (not easy to do on an EpiPen).
In another article last month the writer says she herself had an attack and used the Auvi-Q for the first time. She cites a report (PDF} for Sanofi [the marketer of Auvi-Q} saying that more than half (in every group) don’t carry an injector and many worry about their ability to use one – and, not surprisingly, a majority of parents worry about others ability to.
I have no idea of the study is accurate or even if the article is true – I don’t know beans about epinephrine injectors. I will, though, say that the whole idea resonates with my catchphrase: “Compliance?? Can we make it easy to do the right thing??”
As an allergy mom myself, the study rings true. I’m a fanatic about carrying the epinephrine (and teaching babysitters, grandparents, and teachers to do the same) but I am told (by those same teachers) that I’m unusual. Many parents do not train — or even inform! — teachers about their child’s allergies. One teacher saved the life of a child at our school thanks to the training that I had done for her the previous year when my son was her student.
Here’s another link in the same chain as the Auvi-Q and PillPack inventors — a young woman who invented a non-sexy bra for 11- to 15-year-olds:
http://www.yellowberrycompany.com/c/girls-bras.html
The NYT article about the company:
Can’t Find It at the Mall? Make It Yourself
The kicker quote: “There’s no better inventor than a frustrated consumer.”
Threads here so often stimulate multiple thoughts.
What’s going on here is, truly, disruption of the establishment, by breaking apart chains of access that used to exist in big crusty clusters.
1. “No better inventor than a frustrated consumer”: That’s why democratization of access can be so world-changing. Thirty (nay, 20) years ago your views and mine couldn’t be heard unless we had access to publishing. Here’s a snip from my essay in Mayo’s social media handbook:
Note: person has idea in head; minds out there might hear it; the connector was capital equipment, and now it’s not. Radically disruptive.
2. That issue connects to inventions through Quirky.com, which was covered March 23 on CBS Sunday Morning. For people who have an idea but don’t have access to manufacturing and marketing, Quirky fills it in.
(Whoa – for the first time I just looked at the ideas that are currently up for consideration on Quirky.)
This breaking-apart and democratization of access in no way implies that there’s been a conspiracy to suppress. The trick is to be able to see what’s missing, see what’s possible to change that, then see what needs to be added to connect the idea with reality.
Seems to me this is the bridge from “home health care hacks” to, one step further, “product-izing” a hack and then, another step further, commercializing it.
I love that this thread continues for 7.5 weeks so far.
I’ll repeat the first suggestion back then: let’s build a library of these somehow. Pinterest, with tags?
It’s an interesting question: which platforms to use?
We have a standing offer from Christy Canida of Instructables.com to use their platform for an archive of health hacks. I’m cooking up some ideas for how to find time & resources to do this and would welcome people’s thoughts, contributions, etc.
To spread the ideas, however, we should think more broadly — Pinterest is a great platform for such visual, how-to insights, as is Instagram, and many many others. Any archive that is created must be fully loaded with social media hooks so that it’s easy for people to share the ideas however they’d like to — text and email included!
I do like how visual Pinterest is; I bet a lot of these are instant aha’s at first sight.
In addition to the browsability and current traffic, one big factor is how google-juicy a given platform is.
To merely collect things Pinterest would be a good starting point.
Continuing the spirit of using my blog as an outboard memory, two items I came across this week:
Quirky: another site featuring inventions by “regular people”:
https://www.quirky.com/invent
I like the “Community Feedback” tab where people can critique, praise, suggest, etc.
Also, check out the “first kid-friendly wheelchair” — great design:
http://nocamels.com/2014/06/israeli-ngo-designs-worlds-first-kid-friendly-wheelchair/
Ha ha, you call it “outboard memory” – that’s much more empowering than my version, “If I don’t blog it, heaven knows how I’ll find it later.” Good lesson on outlook from you. 🙂
Here’s the mobility scooter I used when economics (and virtually no disability insurance at work) demanded that I keep working while being treated: http://www.tzora.com/products_1 It comes apart so I could put it in the back of my Prius – a nifty trick for a fully functional scooter!
And here’s your post on a similar ilk from Veterans Day 2010 http://e-patients.net/archives/2010/11/on-veterans-day-inspiration.html (in which I mentioned the same scooter). I’m looking for a photo of it in the back of the car… it’s almost Transformers-like, how it goes from trunk to street rod in 90 seconds. 🙂
Here’s a pic of the scooter packed in the back of the Prius. (I hope this link will work.) http://www.epatientdave.com/?attachment_id=8624
So cool! (The link does work.)
It’s very very clear to me that there’s going to be a vast market for mobility and “incremental help” tools for people are basically just fine but have one need or another in the area of getting around, or shaky hands, or all kinds of things.
I’m in Lucerne, Switzerland this week and I saw someone go racing past in a wheelchair with a heft power-drive unit at the front, attached with a sort of towbar. Never seen anything like it in my life.
I googled “wheelchair power assist” (particularly useful in image search) and found this, which is much more “designed” than the one I saw. http://www.tuvie.com/independent-wheelchair-assist-iwa-motorized-add-on-for-wheelchair-by-oscar-fernandez/
Great, I love this post, it’s really true information and i also take service several time from here.
Upcycling of Conference Lanyards: We use them to clip toys to Alexis’ stroller so they are always in reach!!!
https://drcatherinerose.files.wordpress.com/2014/10/catjeslaunorale.jpg
check out the #MedCity Engage Conference Lanyard put to work immediately following the Conference!
The AARP has created an illustrated guide to tips and hacks for daily caregiving tasks — check it out!
Hat tip: Barbara Figge Fox 🙂
My goodness, “tips and hacks” looks an awful lot like the old Hints from Heloise! 🙂
(Forwarding to appropriate relatives, of course.)
p.s. HOW did your mother abscond with the initials BFF? I mean, it’s TOTALLY you to say “My mother is my BFF – I mean, literally.” I’m sure this is not the first time this has been said…
True and TRUE! My mama is indeed my BFF. Thanks for noticing 🙂