Ernesto Ramirez

July 23, 2014

Today’s post comes to use from our friend and co-organizer of the Bay Area QS meetup group, Rajiv Mehta. Rajiv and Dawn Nafus worked together to lead a breakout session that focused on self-tracking in the family setting at the 2014 Quantified Self Europe Conference. They focused on the role families have in the caregiving process and how self-tracking can be used in caregiving situations. This breakout was especially interesting to us because of the recent research that has shed a light on caregivers and caregiving in the United States. According to research by the Pew Internet and Life Project, “39% of U.S. adults are caregivers and many navigate health care with the help of technology.” Furthermore, caregivers are more likely to track their own health indicators, such as weight, diet and exercise. We invite you to read the description of the breakout session below and then join the conversation on the forum.

Families & Self-Tracking
by Rajiv Mehta

In this breakout session at the Amsterdam conference, we explored self-tracking in the context of family caregiving. In the spirit of QS, we decided to “flip the conversation” — instead of talking about “them”, about how to get elderly family members to use self-tracking technologies and to allow us to see their data, we talked about “us”, about our own self-tracking and the benefits and challenges we have experienced in sharing our data with family and friends. These are the key themes that emerged.

Share But Not Be Judged
Feeling like you’re being judged, and especially misjudged, by someone else seeing your data is a very negative experience. People want to feel supported, not criticized, when they open up. Ironically, people felt that reminders and “encouragement” by an app, knowing that it is based on some impersonal algorithm, was sometimes easier to accept than similar statements from family. The interactions we have with family members aren’t neutral “reminders” to do this or that; they’re loaded with years of history and subtext. One participant commented “What I really want is an app that trains a spouse how not to judge.”

Earn The Right
So much is about learning how to earn the right to say something—that’s an ongoing negotiation, and both people and machines have to earn this. Apps screw it up when they try to be overfamiliar, your “friend.” I recalled a talk from the 2013 QS Amsterdam conference of a person publicly sharing his continuous heart rate monitoring, whose boss had noticed that the person’s heart rate had not gone up and demanded to know why he was not taking a deadline seriously! Such misjudgments can kill one’s enthusiasm for sharing.

Myth Of Self-Empowerment
Just because you’re tracking something, and plan to stick to some regimen or make some behavioral change, doesn’t mean you’re actually empowered to make it so. Family members need to be sensitive to the fact that bad data (undesirable results, lack of entries, etc.) may be a “cry for help” rather than an occasion for nagging.

Facilitating Dialog and Understanding
On the positive side, sharing data can lead to more understanding and richer conversations amongst family members. One participant described his occasional dieting efforts, which he records using MyFitnessPal and shares the information with his mother. This allows her to see how he is able to construct meals that fit the diet parameters (and so learn from his efforts), and also to just know that he is eating okay. I described the situation of a friend with a serious chronic disease who was tracking her energy levels throughout the day. In considering whether or not to share this tracking with her family she realized that they had very little appreciation of how up-and-down each day is for her. So, before she’s going to get benefits from sharing continuous energy data, she’s going to have to help her family understand the realities of her condition.

Sense of Control
Everyone felt that one key issue was that the self-tracker feel that s/he is the one making the decision to share the data, and has control over what to share, when to share, and who to share with.

We hope that before people design and deploy “remote monitoring” or “home tele-health” systems to track “others”, they first take the time to share their own data and see what it feels like.

If you’re interested in reading further about technology and caregiving we suggest the recently published report from the National Alliance for Caregiving, “Catalyzing Technology to Support Family Caregiving” by Richard Adler and Rajiv Mehta.