What if we redefined the Quantified Self movement to include everyone who keeps a pair of “skinny jeans” in their closet? What if the 85% of U.S. adults who own a cell phone understood that it’s potentially a tool for health tracking? What if everyone designing health care tools first talked with patients and caregivers about what they need, instead of making assumptions, without input?<\/p>\n\n
These were the themes of two talks I delivered recently, first at Stanford Medicine X<\/a> and second at the Connected Health symposium<\/a>. Here’s what I said:<\/p>\n\n The e in e-patient stands for engagement.<\/p>\n\n First, an acknowledgement.<\/p>\n\n Tom Ferguson<\/a> was an MD who believed he saved more lives by not practicing medicine in the traditional sense, but by forging a path we have come to call participatory medicine. He was my mentor for the six years I knew him before he died, in 2006, and he continues to teach me as I review what he shared with me.<\/p>\n\n He coined the term “e-patient<\/a>” which many of us use today to describe people who are engaged in their health.<\/p>\n\n Tom saw clinical care as one piece of life\u2019s puzzle. A person\u2019s own motivations, experiences, and values form other pieces of the puzzle. Tom recognized that clinicians shouldn\u2019t try to fit the pieces together for their patients, but rather act as a guide when life\u00a0intersects with medicine.<\/p>\n\n Think, for a moment, about the puzzle pieces of your own life. Think about the pieces you know well and the ones whose edges are blurry or indistinct. How can you go about learning the shape and contours of those mysterious pieces? And which ones intersect with health and medicine?<\/p>\n\n Now think about how a clinician might view your life\u2019s puzzle. How can you help them to see how the pieces fit together? Which pieces do you want to keep private and even hide from view, because they are too personal or scary or embarrassing to reveal? What self-knowledge do you wish you had and do you want to share it with anyone other than yourself?<\/p>\n\n These are the sorts of questions that the Pew Internet Project and California HealthCare Foundation considered as we went into the field with our latest health survey. I\u2019ll give you a sneak preview of the results related to engagement, because I think our field is moving too fast for me to wait for publication.<\/p>\n\n We decided to focus a section of our survey on self-tracking, which is really self-discovery, a basic component of engagement.<\/p>\n\n Looking at my own life\u2019s puzzle, I don\u2019t think of myself as a self-tracker. I don\u2019t own a FitBit or a Zeo. I run, but I don\u2019t track my mileage or my pace. I don\u2019t even own a scale, relying on that time-honored measurement \u2013 do I fit into my skinny jeans? Raise your hand if you own a pair of \u201cskinny jeans.\u201d<\/p>\n\n But I realized that, in this case, I represent what we internet people call \u201cthe normals.\u201d The vast majority. The opposite of the early adopters. The people you may want to reach. So I set out to take some measurements.<\/p>\n\n We found that 60% of American adults track their weight, diet, or exercise routine. One-third of American adults track health indicators or symptoms, like blood pressure, blood sugar, headaches, or sleep patterns. One-third of caregivers \u2013 people caring for a loved one, usually an adult family member \u2013 say they track a health indicator for their loved one.<\/p>\n\n Putting that all together, 7 in 10 American adults are self-trackers.<\/p>\n\n But guess what? Half of them are tracking \u201cin their heads.\u201d These are my people. I\u2019m calling this group the \u201cskinny jeans trackers.\u201d<\/p>\n\n In addition:<\/p>\n\n My question for you is: How are you going to create something that is as easy to use, as simple to fit into someone\u2019s life as keeping track in their head? That\u2019s your goal. Those are the people you may want to reach. They are self-tracking \u201csleeper cells\u201d that you want to figure out how to activate.<\/p>\n\n In our health surveys, we ask people if they are living with diabetes, lung conditions, heart conditions, high blood pressure, cancer, or the catch-all \u201cany other chronic condition.\u201d<\/p>\n\n I took a look at the group of adults who are most likely to need to track a health indicator or symptom \u2013 those who are living with two or more chronic conditions. 62% of adults living with two or more chronic conditions is self-tracking.<\/p>\n\n This is the kind of data that you can use to map the frontier of health and health care. That\u2019s why I call myself an \u201cinternet geologist.\u201d You need to know the history of the land you live on. You need to understand the patterns of current technology use so you can build something that will last. Don\u2019t build your house on sand, build it on bedrock. Lay down paths where people already walk.<\/p>\n\n So, where are the paths online? How can you follow people \u2013 or redirect them to a healthier lifestyle?<\/p>\n\n The path that most Americans are traveling is on their mobile devices.<\/p>\n\n Specific to health:<\/p>\n\n Think about it:<\/p>\n\n Given the rise of smartphones and online tools, should we expect to see the percentage of self-trackers go up? Should it be our goal to see 100% participation in self-tracking among people living with chronic conditions? What about among caregivers? And the general public?<\/p>\n\n Note that last bullet: look for outliers. Watch the mainstream, but also keep an eye out for pioneers.<\/p>\n\n For example, there are some intriguing small groups, like the men who have a menstrual cycle app on their phone. They might be tracking fertility, either trying to make a baby or avoid it. I am sure we can all think of other reasons to track menstrual cycles.<\/p>\n\n Speaking of which \u2013 this is for the ladies \u2013 how many of you have showed up for your annual exam and not been ready with the date of the first day of your last period? Your clinician expects you to self-track and is exasperated if you don\u2019t keep good records and share it with them. Or at least mine is.<\/p>\n\n People living with diabetes face the same challenges around the expectation of self-tracking. As a blogger who goes by @txtngmypancreas wrote <\/a>recently: \u201cAs patients it\u2019s not enough that we have to live with the disease itself. We have to live with the data management as well.\u201d Who is providing the tools to help them? And what is the expectation about their sharing that data?<\/p>\n\n Which brings us to the topic of sharing in general.<\/p>\n\n Going back to our general self-tracking survey questions, we asked people: Do you share your self-tracking records or notes with anyone, online or offline?<\/p>\n\n Two-thirds say no, they do not share.<\/p>\n\n One-third say yes, they share. Of those, half say they share their self-tracking notes with a clinician. The other half share with a family member, friend, or member of a group.<\/p>\n\n What does that tell you about clinical engagement with self-tracking? Are doctors and nurses aware of how many people are self-tracking? Are they maintaining a don\u2019t ask, don\u2019t tell policy? Who are the patients and caregivers who are sharing, who are showing and telling? How are they different from those who do not share?<\/p>\n\n\n
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