The e is for engagement

Painting: "Skinny Genes" by Regina Holliday for Stanford Medicine X

Regina Holliday played with the idea of "Skinny Genes" at Medicine X

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?

These were the themes of two talks I delivered recently, first at Stanford Medicine X and second at the Connected Health symposium. Here’s what I said:

The e in e-patient stands for engagement.

First, an acknowledgement.

Tom Ferguson, MDTom Ferguson 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.

He coined the term “e-patient” which many of us use today to describe people who are engaged in their health.

Tom saw clinical care as one piece of life’s puzzle. A person’s own motivations, experiences, and values form other pieces of the puzzle. Tom recognized that clinicians shouldn’t try to fit the pieces together for their patients, but rather act as a guide when life intersects with medicine.

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?

Now think about how a clinician might view your life’s 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?

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’ll 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.

We decided to focus a section of our survey on self-tracking, which is really self-discovery, a basic component of engagement.

Looking at my own life’s puzzle, I don’t think of myself as a self-tracker. I don’t own a FitBit or a Zeo. I run, but I don’t track my mileage or my pace. I don’t even own a scale, relying on that time-honored measurement – do I fit into my skinny jeans? Raise your hand if you own a pair of “skinny jeans.”

But I realized that, in this case, I represent what we internet people call “the normals.” The vast majority. The opposite of the early adopters. The people you may want to reach. So I set out to take some measurements.

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 – people caring for a loved one, usually an adult family member – say they track a health indicator for their loved one.

Putting that all together, 7 in 10 American adults are self-trackers.

Skinny jeans by Rubber Dragon on FlickrBut guess what? Half of them are tracking “in their heads.” These are my people. I’m calling this group the “skinny jeans trackers.”

In addition:

  • One-third of self-trackers use a notebook or journal.
  • One-fifth of self-trackers use an app, a device, a spreadsheet, or a website.
  • Half track on a regular basis
  • The other half track when something changes, when something comes up and triggers the need to track.

My question for you is: How are you going to create something that is as easy to use, as simple to fit into someone’s life as keeping track in their head? That’s your goal. Those are the people you may want to reach. They are self-tracking “sleeper cells” that you want to figure out how to activate.

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 “any other chronic condition.”

I took a look at the group of adults who are most likely to need to track a health indicator or symptom – those who are living with two or more chronic conditions. 62% of adults living with two or more chronic conditions is self-tracking.

This is the kind of data that you can use to map the frontier of health and health care. That’s why I call myself an “internet geologist.” 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’t build your house on sand, build it on bedrock. Lay down paths where people already walk.

So, where are the paths online? How can you follow people – or redirect them to a healthier lifestyle?

The path that most Americans are traveling is on their mobile devices.

  • 85% of U.S. adults own a cell phone (or as I like to call it, my tracker)

Specific to health:

  • 19% of smartphone owners have a health app on their phone
  • Most popular categories include exercise/fitness, diet/food, and weight.
  • Weight Watchers is an example of a successful program that includes and encourages self-tracking. They’ve had 10 million downloads of their apps, which are integrated with their website and in-person support group program. The secret to their success is the integration, which enables engagement.

Think about it:

  • We have a big group of people who are living with obesity, high blood pressure, diabetes, and other conditions which might improve if they engaged in self-tracking.
  • We have a big group of people who are doing some self-tracking – and there’s even some overlap in those groups. But it’s mostly in their heads or on paper.
  • We have a big group of people who have cell phones, with the potential for an upgrade in how they self-track.
  • But right now it’s just a small group who are using apps, websites, devices, or spreadsheets to do any self-tracking.

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?

Note that last bullet: look for outliers. Watch the mainstream, but also keep an eye out for pioneers.

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.

Speaking of which – this is for the ladies – 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’t keep good records and share it with them. Or at least mine is.

People living with diabetes face the same challenges around the expectation of self-tracking. As a blogger who goes by @txtngmypancreas wrote recently: “As patients it’s not enough that we have to live with the disease itself. We have to live with the data management as well.” Who is providing the tools to help them? And what is the expectation about their sharing that data?

Which brings us to the topic of sharing in general.

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?

Two-thirds say no, they do not share.

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.

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’t ask, don’t 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?

Katie McCurdy is an e-patient who created a medical timeline so that she could discover things about her own health AND show the puzzle pieces of her life to her clinicians.

She is one who decided to share, but remember and respect the two-thirds who do not share their notes with anyone.

Think back to where I started – which puzzle pieces of your own life do you display publicly or talk about with clinicians? Which pieces of your life’s puzzle do you keep to yourself? How should that be reflected in our discussions today about self-tracking?

One of the first lessons I learned from Tom Ferguson was to never assume that I knew the full story of someone’s life. It was Tom who encouraged me to do fieldwork in patient communities, listening and interviewing people about how they use the internet as they pursue health. No matter your connection is to health care, you can benefit from listening to patients and caregivers.

Tom drove this lesson home by recommending a book by the anthropologist Diana Forsythe, “Studying Those Who Study Us.”

In one chapter she describes how, in the 1990s, she did some fieldwork in an artificial intelligence lab that was asked to create an information kiosk for newly diagnosed migraine patients. The idea was that patients could walk up to the kiosk, punch in questions, and get some answers before or after they saw their doctor. It was a nice idea, ahead of its time in some ways. But when it launched, it was a failure. Patients were polite, as they often are, but it wasn’t useful. Why? Because the kiosk’s designers had not asked patients what they wanted to know. They relied on an interview of a single doctor to tell them what he thought patients should want to know.

As Forsythe wrote, “The research team simply assumed that what patients wanted to know about migraine was what neurologists want to explain.”

The mismatch was complete. The kiosk failed to answer the number one question among people newly diagnosed with migraine: Am I going to die from this pain? It’s an irrelevant, even silly question from the view point of a neurologist, but it is a secret fear that people may have felt comfortable expressing to a kiosk, but not to their clinician. A secret piece of their puzzle.

How many of us have asked Dr. Google a secret question? I know I have. The open search box is so inviting, especially on our mobile phones, when the intimacy is multiplied.

Think about how you can use that in your work.

Think about how you can avoid the assumptions that will torpedo your project.

As Forsythe taught us: There is so much potential for greatness, so much potential for impact on people’s lives, if we can just “design for what could be.”

The Pew Internet/California HealthCare Foundation survey asked people about the impact of self-tracking on their lives. I’m going to close with these numbers, because I think they represent “what is.” I want you to go build “what could be.”

  • 34% of self-trackers say their data collection affected a health decision
  • 40% of self-trackers say it has led them to ask a doctor new questions or seek a second opinion
  • 46% of self-trackers say it has changed their overall approach to health

Let’s help people solve their own puzzles. Let’s create tools that engage people and respect what they want out of life. Let’s map the frontier of what could be.

* * *

On a personal note, I was touched by the spontaneous burst of applause I received when I mentioned Tom Ferguson at Connected Health. Many people remember him as fondly as I do and many are carrying on his legacy. When I talked with a few people later, tears sprang to our eyes as we remembered Tom and Diana Forsythe, who also died before her work was complete.

I also loved how many people at both events came up to me privately to talk about their own pair of skinny jeans (or as one man said, “my skinny suit”). The image touched a nerve, as if it is a “secret puzzle piece” that we all share. I hope we can carry these reflections forward into the work we all do.

13 thoughts on “The e is for engagement

  1. Here’s an oldie but a goodie that speaks to how to think about the whole person when doing consumer/user/human segmentation for the purpose of personalizing products and services. At Institute for the Future, we explored how people define “health” and the resources they call on to keep themselves healthy on a daily basis. The resulting “personal health ecology” is a provocative frame for thinking beyond the person as a disease or a statistic. http://www.iftf.org/uploads/media/SR-783_Engaged_Consumers.pdf

  2. Hi Mary,

    Thanks for highlighting that prescient 2002 report. I printed it out (high praise) and read it today. The profiles and ethnographic research presented are very helpful, but my eye was drawn (not surprisingly) to the national survey results.

    I was interested in how you defined the “Health Engagement Index” along the following axes:
    - Does the respondent have some, most, or all responsibility for managing their household’s health and health care (82% of U.S. adults)
    - Do they spend at least one hour per week managing their household’s health and health care? (74% of adults)
    - Have they made a diet change within the last year to be healthier? (69% of adults)
    - Have they looked for information about alternative treatments in the last year? (56% of adults)
    - Do they take nutritional supplements daily? (54% of adults)

    I was also intrigued by the “10 years from now” predictions that the portion of “highly engaged” adults would grow from 33% in 2002 to 41% in 2012. Has the Institute conducted a survey to check their prediction? Which barriers turned out to be more difficult — and which ones disappeared? Which societal changes turned out to enable consumer engagement in health? If you or your colleagues have written about these issues more recently, I’d love to know about it!

    In my observation, most people didn’t foresee in ’02 the sweeping changes that have been wrought by nearly-ubiquitous internet access — broadband in 2/3 of U.S. homes, nearly all schools & libraries, and the growing segment of people who own smartphones (45% of U.S. adults as of Sept 2012). People expect to have access to information and — crucially — to each other. That expectation is, to me, the biggest shift and driver of engagement.

    Tying it back to the themes of the new Pew Internet/CHCF health survey, we see that people expect to be able to track — and may need to be shown how tech can help them with what they are already pursuing.

    We also see evidence that a segment of people are connecting with other people who share the same health condition — often online — and feedback among them and to their health care providers is made so much easier. I hope that any team creating an information tool for newly-diagnosed migraine patients, for example, would realize how easy it is to tap into an online community and listen to their input.

  3. Susannah–Thank you for your wonderful thoughts on this topic! I too am a “silent self tracker.” I have tried so many of the different tracking apps (my own little one-person study so to speak) and found that none of them met all of my needs. So, I designed my own pen and paper system. Okay–it was your typical poster and I awarded myself stickers if I met one of my 8 target “tiny habits.”

    My poster combined BJ Fogg’s own tiny habits experiment and this daily women’s health journal which focused on cardio, strength conditioning and healthy eating that I had used previously, which eventually got too bulky for me and didn’t incentivize me enough. The 8 habits on my poster included the three areas from the journal as well as tracking how much sleep I got and my water consumption.

    With my poster, if I achieved the habit so many days in a row (i.e. dink 16 oz. of water a day), then I make it a bigger habit (i.e. drink 32 oz. of water). When achieved, I got myself something to encourage me more like a fun, bright colored workout tee. I was going really strong for about six months–and then the stickers lost their shine, though a good handful of the habits have stuck.

    So thank you–because some may observe my behavior and call it anal or overly structured. But from your post, I know I’m not alone!

    Best,
    Alex

    PS: While there are menstrual tracking apps (I use one), I want an all-in-one solution, that’s easy to use and sophisticated but not overly complex. Maybe one day… http://www.nih.gov/news/health/aug2012/od-23.htm

  4. A dialog between Mary and Susannah is one I will eagerly listen in on. I went back and read the IFTF report also, and was struck by how clearly the issues were outlined in 2003. A theme that I think has emerged in the meantime is the role of the non-professional in knowledge _making_. This is different than the knowledge sharing via the articulated social networks that the IFTF work so clearly maps. Collaborative knowledge making has some additional steps, such as tracking results of treatment choices over time, and deliberate experimentation. This aspect stretches (and probably breaks) the concept of a health care consumer. Susannah’s talk used weight loss as a key example, for good reason. It is something many people do and care about. As we begin to track ourselves more easily we may find out that current theories about weight gain and loss don’t help as much as we’d like. Maybe we will gain some better theories. (I hope so.) In other words, self-tracking means more than self-regulation; it also ought to produce new discoveries.

  5. Susannah, it was a real treat listening to your presentation at the Connected Health Symposium in Boston. One of your comments that really stuck in my mind was:
    “What if everyone designing health care tools first talked with patients and caregivers about what they need, instead of making assumptions, without input?”

    That is one of the main reasons why patients don’t fully engage with their doctors electronically. The software is just too complicated for the average patient. And as you pointed out, the best way to test the value of an app or web site that tries to engage patients is to see if your mother or grandmother can use it–effortlessly.

    The other reason I believe many patients are not fully engaged in their own care, assuming for the moment that they are under a doctor’s care, is lack of trust.
    While some of this distrust is paranoia, some of the concern is based on well-documented medical mismanagement, misdiagnosis, and sloppiness on the part of the healthcare industry. A disturbing analysis in the Wall Street Journal, penned by Marty Makary, MD, a Johns Hopkins Hospital surgeon, points out that: “Medical mistakes kill enough people each week to fill four jumbo jets.”

    Given this very real threat, patients have the right to see a hospital’s statistics on infections, readmissions, and surgical complications. If your facility hopes to gain full patient engagement–which depends in part on patients’ trust–it needs to offer an online dashboard to list this kind of data, along with the annual volume of each type of procedure it does, mortality rates for various surgeries, patient satisfaction scores, nurse-to-patient ratio, and much more.

    Thanks for a great presentation.
    Regards,

    Paul Cerrato
    Editor, InformationWeek Healthcare

  6. Thank you, Susannah, for this articulate and passionate post on the evolution on the nature of self-tracking and how it can help people’s health and well-being. Being a geek (contributing writer for Mashable), I’m astounded by the amazing tools now available (Tic Trac, Mappiness, Mood Panda, The Human Face of Big Data, etc) that rely on passive sensors in cellphones to let people track their activities without having to constantly input new data. When combined with Big Data captured by sensors in the world around us (what we buy, where we shop, when our car uses an EZ Pass, etc), the aggregate picture of individuals/communities and their health will be much easier and more robust to analyze and broadcast where appropriate.

    Your comments about Tom Ferguson touched me a great deal in regards to the notion that clinical care is “one piece of life’s puzzle.” Our health and well-being is affected by numerous factors, many which are currently trackable and many which may be trackable soon. But the more health experts and geeks (a term of respect from me) can work to “act as guides where life intersects with medicine” and create tools that people already use (GPS in their smartphone, etc) the more informed the “normals” can be and adoption of these positive measures/tools on a wide scale can begin.

    Really glad to learn about your work and very excited to read the whole report.

    John C. Havens
    Contributing Writer, Mashable
    Founder, H(app)athon
    http://www.happathon.com

  7. Thanks everyone!

    My friend Fran Melmed let me know that there’s a discussion happening on LinkedIn which focuses on Mobihealthnews.com’s coverage of my speech. Here’s the article:

    http://mobihealthnews.com/18911/pew-70-percent-are-self-trackers/

    One participant in the LI discussion critiqued the value of asking a broad question about self-tracking, implying that it isn’t useful to know that a big segment of U.S. adults are tracking “in their heads.” I was intrigued by the issues he raises, so I’ll quote:

    >> Is it correct or helpful to say that people who are tracking “in their heads,” for example by noticing how their jeans fit, are truly *tracking*? If you notice that you tend to get stressed around the holidays, are you “tracking” stress? Is taking your child’s temperature “tracking a health indicator of a loved one”? <<

    I replied to him on LinkedIn, but thought it might be useful to post the same comment here (cutting out the beginning, which included an invitation to join our discussion):

    As you're probably aware, Pew Internet usually holds back survey findings until we complete our analysis, write a full-length report, send out an embargoed press release, post it to our site, tweet a few data points, then start including it in speeches, etc. You know the script.

    We at the Pew Research Center are experimenting with new ways to contribute our data to the public conversation, going off-script a bit and watching what happens. My hope, in this case, is that by talking publicly about what I'm working on while I'm working on it, I can learn from my community colleagues (which I consider you to be) about opportunities and pitfalls to watch for in the analysis. I also hope to contribute timely data to the conversation as quickly as I possibly can. Note that except for one data point about people living with chronic conditions, I stuck to topline results. I am not rushing the data analysis, but I am trying to be generous in my sharing of what we've got.

    The speeches were meant to raise "what if?" questions, to inspire new ideas, to whet people's appetites for the health data meal to come. I hope that you'll withhold final judgement of the survey results until we publish our full-length reports. The mobile health data will appear tomorrow (Thurs 11/8) on pewinternet.org and the self-tracking data will appear in December (exact date TBA).

    Thanks again for your interest and your comments.

    -end of my comment-

    So, there you have it! I hope that explains why I'm being even more open & transparent than even my usual mode. And I hope that you all bear with me as I hunker down with the data for the next few weeks. Can't wait to tuck in at the communal feast table with you all in December!!

  8. Oh, and here’s the wording for the key screening questions to hopefully reassure everyone that taking a child’s temperature isn’t what respondents heard or meant when they answered it:

    ASK ALL:
    Now thinking about your health overall… Do you currently keep track of your own weight, diet, or exercise routine, or is this not something you currently do?

    ASK ALL:
    How about any other health indicators or symptoms? Do you happen to track your own blood pressure, blood sugar, sleep patterns, headaches, or any other indicator?

    ASK ALL CAREGIVERS:
    Turning again to the UNPAID care you provide to family, friends or others… Do you happen to keep track of any health indicators or symptoms for any of the people you care for?

    Note that the screener for caregivers consisted of 5 questions to be sure we weren’t just talking about general parenting.

  9. Thank you for the attention to my comment in the LinkedIn Forum, Susannah. I did not intend to suggest that survey respondents would consider taking their child’s temperature to be tracking. I was posing the question to Forum members in order to suggest that there may be distinctions between tracking, observing, and measuring, and I questioned whether such distinctions were sufficiently acknowledged by considering skinny jeans to be tracking.

    I share your interest in the quantified-self movement. Even if some may wish to dismiss the distinctions I see between behaviors such as tracking, measuring, and noticing, I propose that study of self quantification may be furthered by at least recognizing that others may also see these distinctions. Ultimately… Yes, I did question the validity of the 70% figure, if half of those are “tracking in their heads.” My intention was not to discredit the study, but to suggest that the findings were sufficiently meaningful based on the 35% who were actively tracking and recording, more likely with intent and purpose.

    As in my profession of wellness, I think we sometimes inadvertently undermine our credibility and muddy the waters when we expand our terms to include… just about everything.

    I look forward to reviewing the full report. I acknowledged in my original comment that my response was based on the assumption that the article being discussed was accurate.

    • I felt compelled to reply, as Bob did, on your blog, Susannah, since I started the conversation on LinkedIn.

      My concern for information presented in your interview with Mobi Health News was the headline (Pew: 70 percent of Americans are self-trackers). As Bob explained in his post above, 35 percent would have been equally compelling to those of us in the health industry and, perhaps, more accurate. To me, the data was stretched to create a headline that would drive readers.

      As someone who writes and consults in health care, I’m particularly sensitive to overstatements and support the efforts of people like Gary Schwitzer who are trying to hold us to accurate reporting.

      In that spirit, I tweeted the Mobi Health story in the following manner:

      @carolharnett 70% of Americans are self-trackers. About 1/5 are using tech to track health and 50% are only tracking “in their heads” http://shar.es/GaYlB

      After reading this blog post, I am simply concerned with the writer and how he positioned the story. And that was my point in the LinkedIn discussion.

      Thanks for joining our other conversation. I appreciate your work.

      • Thanks very much to both of you for the comments, both here and on LinkedIn. I appreciate the close attention paid to our work. Those caveats you point out are important for people to note and understand (and for me to emphasize in the upcoming report).

  10. Having just found this (kinda) epic post NOW, I see way too much to digest at first … I gotta unload some of this first.

    1. For the record, our colleague & FOT (Friend of [Doc] Tom) Gilles Frydman, who knew Tom way back when, asserts (e.g. in this comment) that to Tom, the e was most definitely about being online, not focused on engagement.

    As you know, I came along after Tom passed, so I dunno. But in speeches I’ve often pointed out:
    in those days there was selection bias: by definition, anyone online was by definition engaged
    in these days it’s the opposite – all kinds of un-self-aware bozos are online, without a clue about why or what’s possible

    And regardless of what the e stands for:
    It seems to me that the big difference compared to pre-internet is the network connections patients can have, with information and with each other. This is the shift that alters what’s possible in the patient-clinician dialog. (I know that’s not specific to self-tracking.)
    And engagement in one’s health, whether or not it’s “the” e, is the factor that makes all the difference in whether that new potential makes any difference.

    And all that leads me to ask: does self-tracking actually matter? Does it make any difference? How? Under what circumstances? I think so, but is there any evidence?

    Hint: for me the archtypical engaged patient has always been the person with diabetes. They have to self-track, or they’re screwed. Only recently did I learn that self-tracking (home testing) only became possible 100 years ago. Wow.

    And at the other end of the time scale, the latest and most amazing is Hugo Campos, who wants the raw data coming out of his implanted defibrillator.

  11. Update: I keep meaning to post a poll someone sent me last year about how many women use jeans to track their weight. I’m not saying I’ve vetted the methodology or anything like that, but I think it contains at least a grain of truth:

    http://www.prnewswire.com/news-releases/jeaneology-shopsmart-poll-finds-women-own-7-pairs-of-jeans-only-wear-4-98274009.html

    Key points:
    - The majority (91%) of women own at least one pair of jeans. Women own 7 pairs on average (1 in 4 women owns 10 or more), but they wear just 4 pairs on a regular basis.
    - Thirty-one percent of women say they refuse to go up a size to find jeans that fit, 50 percent are holding onto a pair of their “skinny jeans” in hopes of squeezing into them again, and 62 percent use their jeans as a measure of whether they need to lose weight.

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