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The wearables paradox | ChroniCarly

I just finished listening to “The self-tracking patient” panel – part 3 of the Friday programming at Stanford’s Medicine X conference. The description from MedX’s website reads as follows:

Self-tracking involves the collection of any data that can be measured about one’s self over time. Focusing on the incorporation of technology into data acquisition, the session will present forecasts and stories from luminaries and those leading the self-tracking movement. (link)

Sonny Vu, Co-Founder of Misfit Wearables created a major stir in the epatient community (attending and virtual) when he stated that “We never really asked users what they wanted” when designing their wearable, self-tracking devices. The tone was very dismissive to me, not at all the Steve Jobs “dream big” tone you may assume, given the venue.

“We never really asked users what they wanted”

He went on to elaborate that when users were asked, the answers were not meaningful to the designers, so they were essentially thrown out in favor of simulations. Mr. Vu seemed extremely proud of the fact that the designers wore CGMs complete with faux insulin. This act allowed the team to design products that would give the patients what they really needed (as determined by the design team). If you think this logic is a little hard to follow, you’re not alone. Somehow this all seemed to make sense in his mind. Vu went on to state that it would be too difficult to get at the real patient experience without hiring a bunch of people with diabetes.

I would like to comment on two major points:

Design

I am shocked at Vu’s comment about not listening to the patients. In an ordinary setting, I might not bat an eye at this lazy technique, but it was hard to stomach in the context of Patient NeXt day at Stanford (following IDEO day where teams innovates new products with patients).

If the good comments are not coming out from patients, then you are doing a poor job of facilitating the focus group. Perhaps Vu’s attitude about patient concerns and comments came out in the company’s interactions and the patients, in turn were not as open or honest as they might otherwise have been. Maybe enough time and care was not taken to coach the patients to think bigger or more critically. What types of patients were questioned? How were the questions worded? All these factors matter.

The further comments about hiring a team of people with diabetes is possibly even more ridiculous. People with diabetes self track because they have to (hat tip to Dana Lewis) and are probably the most engaged patient community I’ve seen on Twitter. They are easy to find. So easy, in fact, that Kerri (a person without diabetes) has essentially been adopted into their community because she enjoyed engaging with the members of the diabetes online community. Shockingly to some, people with diabetes and other medical conditions are actual human people that you can hire for a focus group of your very own!

Vanity

Another comment Vu made was that “Vanity is a big driver” re: wearables. This comment was infuriating to me because a “big driver” for me is to be simply HEALTHY. Self-tracking for vanity is simply chasing fads, which we all know can change quickly and arbitrarily. Self-tracking for vanity completely divorces the purpose of self-tracking from the marketing culture around the shiny new desirable gizmo. This is a waste of brain power (think Pet Rocks and Furby).

Personally, I feel that the consumers who are attracted to wearables primarily because of their appearance are less likely to be chronically ill.  This is especially true for wearable devices that are optional, not essential to manage their condition. In my experience, whenever I have had medical paraphernalia connected to my body in a real world setting, I did as much as possible to hide or mask it. If I had a drain attached, I wore baggy clothing to cover and conceal. My friend who had an ostomy as a young girl chose to wear an uncomfortable Spanx-like girdle to conceal the bulge the bag would have made under her clothing so she could navigate high school life more easily. I wore large sweatshirts and ace bandages when I had a PICC line that left me with lines dangling from my upper arms while I attended high school.

At the risk of stereotyping the healthy, the gadgets that people like to show off are those that are completely superfluous indicators or wealth and status (think: Google Glass, Fitbit Flex, the Nike+ app that humble-brags your runs to your Facebook friends). Do you see luxury NG tubes? Did anyone camp out last Friday to get hot new colors of colostomy bags?

Sonny Vu spoke from the main stage at MedX during Patient NeXt day, yet his words raised a lot of red flags to me as a patient. I hope that Sonny and Misfit Wearables can take the opportunity to actually listen to epatients over the next two days at MedX. The world’s brightest technology designers can serve a much higher purpose than just a pursuit of vanity and it is my hope that they will engage in meaningful interaction with their target patient communities in order to create excellent products for patients.

 

 

14 Responses to The wearables paradox

  1. Annette says:

    Paradoxically there is a patient group called RheumaMisfits that’s been around a long time – vanity does not drive their choices or those of anyone who is chronically ill. Given a choice I would go for the better design but never for the look alone.

    If I were gooing to self track more extensively than I do now I would want to see a very likely health benefit. Dealing with the issues I have now leaves me with little energy or time to add more to the daily list of self-care items.

    • Carly says:

      I agree! Self tracking extensively requires time (and sometimes money) that the average chronically ill patient doesn’t have, either because they are already pushed to their limit or because they want to use the small remainder of time/money to engage in a non-health hobby. You want the time and effort to really be worth it, not just a hobby.

  2. Absolutely 100% right on the money, Carly. I could scarcely believe what Sonny Vu said out loud to a room that included dozens of Real Live Patients and a worldwide audience of far more of us watching online – almost as if he were actually unaware of how offensive and inappropriate such an admission would clearly appear. There remains a small chasm between the self-absorbed “vanity” of early adopters/Quantified Selfers and the Real Live Patients for whom vanity is hardly a motivating factor in self-tracking.

    • Carly says:

      I truly do love MedX, but things like this happened last year and they’ve already happened this year – on day one! While it is revolutionary that patients are given 10% of the seats, obviously we still have a lot of work to do before we are really respected by everyone as something more than props or cash cows.

  3. Laura says:

    thanks for confirming what I thought he said – I was only able to ‘half’ attend, due to being at work and grabbing snatches of MedX on the web. Here’s hoping the next days will open some minds to the importance of talking with and listening to patients/end users.

    • Carly says:

      Thanks for the comment Laura! I normally work from home on Friday, but took the day off so I could focus on the conference virtually. I knew it would be hard to follow the video feed and Twitter. I am actually looking forward to rewatching the video for this panel. It is important to me that I be fair, and I only quoted Sonny Vu as far as I could be sure I had the words right. Everything else is a paraphrase to the best of my abilities. It is interesting to see the different reactions to the panel between epatients and tech developers.

      • And so it is always thus. The tech types are busy high-fiving each other over The Next Big Thing that’s going to change health care as we know it. Wrote about this after last year’s conference: http://myheartsisters.org/2012/10/10/no-smartphone/

        • Carly says:

          I hope we can change this. I am cautious to walk the line between the taboo “ranty patient” and gently but firmly reminding people in power that this line of thinking is not the way to respect and serve people with chronic illness.

          • Agreed. We saw a great example of this at MedX when Regina Holliday was seated onstage with four white guys, all working in tech. She continually sought to dial down the hype back to the real world of the patient and family, yet was completely ignored/over-talked while she tried to explain, for example, that she came from “three generations of no-insurance”. They didn’t hear. They didn’t listen (one in particular actually avoided eye contact every time Regina spoke!) She speaks for patients with chronic illness and those who love them. These men don’t.

  4. Chris says:

    Not sure if it’s worth mentioning that we’ve done this specific song and dance before – https://twitter.com/iam_spartacus/status/383998325713666049

    • Carly says:

      I’m pretty sure it was the same wearables companies presenting in 2012 as well. I’m all for these technologies, but it’d be nice to be honest about devices marketed to chronic patients vs those just marketed to people trying to look cool.

      • I agree, Carly. I suspect we need a division of health app categories: one for ‘health’ and one for ‘fitness’ – the two are too often lumped together as if they feature the same needs. Interesting tweet from Chris about that OLD comment – as we say, “Plus ça change, plus ça reste la même…”