The Telegraph’s recent retrospective on Facebook and its evolution from 2004’s ‘Thefacebook’ of Harvard University students to the Facebook that many of us use now, with Chat, timeline and a converged mobile and desktop design, led reader Mike Clark to drop Editor Charles a line about how healthcare isn’t maximizing social media and internet-based innovation. Recent studies have indicated that these social patient communities benefit their members. Agreed, but there are increasing qualifications–and qualms.
Back in 2014, Facebook made some noises on forming its own online health communities, a move that was widely derided as Facebook monetizing yet another slice of personal (health) data from users. While Charles has made the excellent point that “almost all good health apps are essentially the tailored interface to an internet service that sits behind it, a fact often forgotten by commentators”, Editor Donna on her side of the Atlantic has seen concerns mount on privacy, security and the stealthy commercialization/monetization of many popular online patient support groups (OSGs) which Carolyn Thomas (‘The Heart Sister’) skewers here, excepting those with solid non-profit firewalling (academic, government, clinical). Example she gives: Patients Like Me, which markets health data gathered from members to companies developing products to sell to patients. How many members, with a disease or chronic condition on their mind, will browse through to this page that says in part: “Except for the restricted personal information you entered when registering for the site, you should expect that every piece of information you submit (even if it is not currently displayed) may be shared with our partners and any member of PatientsLikeMe, including other patients.”
We’ve also noted that genomics data may not be sufficiently de-identified so that it can’t be matched through inference [TTA 31 Oct 15], with the potential for sale. And of course Hackermania Running Wild continues (see here).
For now general information sites like WebMD and personalized reference sites such as Medivisor feel more secure to users, as well as small non-commercialized OSGs and ‘closed’ telehealth/telemedicine systems.
Carolyn Thomas is the ‘Heart Sister’ of the eponymous blog, and has been a guest columnist and commenter in these pages. Via Twitter she brought to her followers’ attention this back posting which chronicles how a person who normally copes with a chronic disease can be absolutely kicked in the kishkes* when a few other physical troubles are added to the pile. Alone, they could be coped with; aggregated and on top of difficulty functioning, they make for Misery. And Misery makes for Non-Compliance. And Non-Adherence. And the Burden of Treatment gets ever heavier, and the frustration of both patient and doctor (pressed to quantify and meet goals) ever grows.
If you are designing technology around compliance, don’t be surprised if many of the people you could benefit treat it like measles if it’s not positioned right or is thinly disguised Nanny Tech. (See ‘Uninvited Guests‘)
Editor Donna will let Ms Thomas take it from here.
Related reading: Is how we are treating patients for chronic diseases (and pre-diseases) all wrong?
*Kishkes (New York Yiddish, antique) = guts.
From our occasional Canadian contributor and genuine Heart Sister Carolyn Thomas is a handy (and funny) Bingo card with squares describing many of the ‘helpful’ things one may say to those with chronic illness, especially the invisible sort. As our readers are engaged with services and/or technologies which help others to manage chronic illness, or have lived through our own or those close to us, perhaps we are more sensitive…but that doesn’t mean we shouldn’t educate, or be aware of the occasional silly remark we still make. Also read the linked article, ‘But you don’t look sick…” Let’s all play Chronic Illness Bingo!
[grow_thumb image=”http://telecareaware.com/wp-content/uploads/2014/09/the-thinker-statue-flickr-satyakam-khadikar-480.jpg” thumb_width=”150″ /]Adopting or Ditching It? We’re barely into September, yet the first 2015 prediction-of-a-sort is on the record from Center for Connected Health‘s Dr. Joseph Kvedar in The eHealth Blog. Does Apple HealthKit+Samsung‘s SHealth’s iterations+Google Fit+smartwatches everywhere (including LG’s G Watch R) equal $7.2 billion in wearables alone by 2018 as part of a mHealthy $49 billion by 2020? He’s optimistic, yet he hedges his bets with the caveat
“The challenge in health care is that, though we know what patients/consumers need to do to improve their health, most of them don’t want to hear about it.”
Which indicates that Dr. Kvedar has joined our small group of Thinkers puzzling out why health apps haven’t taken off beyond their Quantified Selfer early adopters and what Parks Associates termed ‘Healthy and Engaged’ [TTA 11 Aug]. With 1/3 of the purchasers of activity trackers putting them in the drawer after six months and the unstickiness of apps (80 percent are abandoned after a shocking two weeks), the winning combination isn’t obvious. But is it ‘focus on engagement’ and ‘personal, motivational and ubiquitous’? Certainly key factors, but how do we get the ‘Challenged but Mindful’ with a chronic condition–or two or three–to track and reward their real progress, even on a bad day–which an activity tracker which constantly presses you to exceed your performance has trouble gauging. (more…)
Preventable medical errors persist as the No. 3 killer in the US – third only to heart disease and cancer – claiming the lives of some 400,000 people each year.
(US Senate hearing, cited in HealthcareITNews 18 July 2014)
At the end of last month, this Editor questioned the efficacy of our current state of ‘consumer engagement’ in Patients should be less engaged, not more. The ‘less engaged’ was a call for simplification: regimens and devices which were easier to use, less complicated and far easier to fit in everyday life. (Aesthetics helps too.) Back in 2013, HeartSister/Ethical Nag (and Canadian) Carolyn Thomas called for health app (and by inference consumer engagement) designers to ‘skate to where the puck is going’–as in “For Pete’s sake, go find some Real Live Patients to talk (and listen) to first before you decide where you’re going!” Often it seems like these apps and platforms are designed in a vacuum of the entrepreneur’s making. The proof is the low uptake (Pew, Parks, IMS) and the apps’/programs’ lack of stickiness after all this time (Kvedar 8 Sep blog post).
Now Laurie Orlov tells us we were looking at the wrong puck, as analysts do. First, all that ‘nudging’ and all those apps haven’t moved the needle on diabetes and obesity. Second, why are app developers neglecting that third largest killer, preventable medical errors? Add to that 400,000 yearly–over 1,000 per day–the 10,000 estimated patients every day who suffer serious complications. (more…)
This week’s sad news of the death of comedian/film star Robin Williams and his ongoing battles with addiction and depression are the center of this thoughtful article by EIC Veronica Combs in MedCityNews. Even with access to the best care and innovations such as virtual visits, Mr Williams committed suicide. The larger point made is that access and healthcare innovation don’t mean automatic adoption or a positive outcome. Some of those with chronic physical or mental illnesses choose not to change their behaviors, comply with a regimen or even to seek help, much less seek out technology or be a QSer. And some are simply beaten down and depressed by the perpetual Battle of Stalingrad that is chronic disease–ask any diabetic [TTA 5 Apr 2013]. Her conclusion is that though innovation may not help everyone, it doesn’t mean we should not pursue it. And, this Editor would add, for developers to realize that they must make technologies simple and affordable enough–‘tear down that wall’–so that those who won’t access help become fewer. (And, yes, there is a spiritual aspect of care that must be addressed–see VOX Telehealth’s work with HealthCare Chaplaincy Network TTA 25 July.)
Update: Other factors may have tipped Mr Williams’ depression flare-up. The first (more…)
[grow_thumb image=”http://telecareaware.com/wp-content/uploads/2014/07/twitterban-590×330.jpg” thumb_width=”150″ /]It’s time to go cold turkey. One of the hallmarks of being active on healthcare tech or digital health scene is Twitter. Even more than LinkedIn groups, websites and blogs, it’s how increasingly we communicate with and acknowledge each other in the field. But it has its shortcomings. It’s become a chore to follow the tweetstream in my (deliberately limited) account, because there’s all that filler. I have to scroll…and scroll…to find the ‘wanna read’ nuggets by those who post ‘the good stuff’ (and you know who you are).
The volume increases dramatically during conferences. There’s good links and photos, but increasingly it’s become a festival of incidental remarks about speakers being on (sans content links), tweets about going here and there, social pictures of lunches and dinners, selfies. Increasingly, no one puts down their phone! At sessions, instead of being riveted (or not) on the speaker, attendees are glued to their phones, furiously keyboarding and tweeting…whatever. It’s insulting to the speaker who’s trying to engage with the audience, for starters. Then there are the meetings with the tweetstream posted to the side of the stage–another distraction. Most of all, by furiously fingering, aren’t you cheating yourself of the conference experience for which you or someone has paid dearly? Isn’t the point of being there human contact and time off the screen?
Carolyn Thomas, Canada’s own ‘Ethical Nag’ and ‘Heart Sister’, describes kicking Obsessive Live-Tweeting at Conferences far more wittily in How we got sucked into live-tweeting at conferences. An excerpt:
For too long, I’d been telling myself:
–that live-tweeting isn’t a problem for me
–that I could quit anytime
–that the tweets I send to my Twitter followers while listening to a conference speaker onstage are actually interesting, high-quality messages
–that it must be okay because everybody else in the audience is doing it, too
But now I know that it’s time to quit cold-turkey.
[grow_thumb image=”http://telecareaware.com/wp-content/uploads/2013/02/gimlet-eye.jpg” thumb_width=”150″ /] APPROVED by The Gimlet Eye, on assignment directing Air Traffic Control for Mr. Claus.
I can see from my ______ wrist device that it’s once again time for my annual Christmas letter to update you on a number of personal facts about the past year! Lucky for you, I’ve been able to view my daily data on a variety of self-tracking devices using interactive graphs to spot trends and patterns so far. The year raced off to a great start because I got a new ______ from Santa last Christmas. (Continued…)
Our final pre-Christmas post is from the ‘♥ Sister’ herself, Carolyn Thomas, who has written this most witty communication that you may well receive from your favorite (?) Quantified Selfer. If not, reading this you will be forearmed at holiday tables and gatherings. You will view your QS nephew or friend in a new, more tolerant light. Wearing their Google Glass, tracking the cookies and egg nog on their Fitbit or Jawbone UP, passing around the Misfit Shine, obsessing on what workout will most efficiently balance the caloric intake…. To the rescue? Spot the Dog. Fitbit, Jawbone and Shine make great chew toys, and Glass…will Spot get to it before the video hits the cloud?
We wish all of our readers a marvelous Christmas Holiday, Festive Season and Happy New Year! (and thank Carolyn for the reference!–Ed. Donna)