Tag Archives: susannah fox
Personal data, personal meaning. That’s the guiding principle of much of the work we do here at QS Labs. From our show&tell talks and how-to’s, to our worldwide network of meetups and carefully curated unconferences, we strive to help people make sense of their personal data and inspire others to do the same. However, over the last few years we’ve started to see that there is a third actor in the Quantified Self space. Data collected in the ordinary course of life can hold clues about some of our most pressing questions related to human health and wellbeing. Personal data might be a resource for public good.
On April 3, 2014 Quantified Self Labs with support from the Robert Wood Johnson Foundation, the US Department of Health and Human Services, and Calit2 at UCSD hosted the first Quantified Self Public Health Symposium. We gathered over 100 researchers, toolmakers, science leaders, and pioneering users to open up a discussion about what it means to use personal data for the public good. Over the course of the day we hosted a variety of talks, discussions, and toolmaker demonstrations. This week we’ll be highlighting some of the outstanding talks delivered at the symposium and we’re kicking it off with one of our favorites.
Susannah Fox has been a friend and colleague for many years. Her pioneering work at the Pew Internet and Life Project has inspired us many times over and remains the standard for research pertaining to self-tracking. We asked Susannah to help us open up the meeting by discussing some of her research findings as well as her thoughts on self-tracking in the broader landscape of health and healthcare.
(A transcript of Susannah’s talk can be found on her website here.)
Earlier this year we discussed some very interesting research from the Pew Research Center’s Internet & American Life Project about the role of technology and the Internet in health and healthcare. We were lucky to have Susannah Fox, Associate Director at Pew, talk to us a bit about what it means when 21% of people who track are using some form of technology. Of course, that conversation and that research spawned a few more questions and some interesting insights.
Today we’re looking at some brand new research results coming from Pew that are derived from that same research data set. This time Susannah and her team have focused on a particularly important set of individuals in the health and healthcare space: caregivers. In their recently released report, Family Caregivers are Wired for Health, they found that 39% of adults in the U.S. are caring for child or adult. So why talk about this here? What does that have to do with Quantified Self? Well, it turns out that the people who spend their time and energy caring for the health and wellbeing of others may actually be more engaged in tracking than their non-caregiving counterparts:
- 72% of caregivers track their health (weight, diet, exercise, blood pressure, sleep, etc.) while 63% of non-caregivers track their health.
- 44% of caregivers who track say they track their most important indicator “in their heads” (non-caregivers = 53%).
- 43% of caregivers who track say they track their most important indicator using paper (non-caregivers = 28%).
- 31% of caregivers track the health of someone other than themselves.
“When controlling for age, income, education, ethnicity, and good overall health, being a caregiver increases the probability that someone will track a health indicator.”
- 41% of caregivers who track share their data with someone else (non-caregivers = 29%).
- 52% of caregivers who track say it has changed their overall approach to maintaining their health or the health of someone for whom they provide care (non-caregivers = 41%).
- 50% of caregivers who track say it has led them to ask a doctor new questions or to seek a second opinion (non-caregivers = 32%).
- 44% of caregivers who track say it has affected a decision about how to treat an illness or condition (non-caregivers = 26%).
We asked our friend and fellow QS organizer, Rajiv Mehta to comment on this report. When he’s not helping organize our Bay Area QS Meetup, Rajiv has been working on exploring and understanding caregiving.
“Given the prevalence of caregiving (40% of adults) and that 30% of caregivers track something about the person they’re caring for, there’s a lot of opportunity for appropriate tracking and analysis tools. However, caregiving often involves tracking a wide variety of medications, biometrics, symptoms, etc., and design and developing appropriate tools is not easy. I recently wrote about my own experiences in “Self-Care and Caregiving Apps Development.” After all these years of QS meetups and conferences, I can only recall one talk of caregiver tracking (a mother tracking the progress of her baby). Hopefully we’ll see much more over time.”
Please take some time to read the full report and for the data savy, take a look at the preliminary survey data and see what you can find. We would love to hear your thoughts on this new report here in our comments or on our forum.
Today the Pew Research Center’s Internet & American Life Project released their latest findings in their ongoing research on the role of the Internet and technology in health and wellness. This latest report, Tracking for Health, is of particular interest to the Quantified Self community because it focuses on self-tracking. Thanks to Pew Associate Director, Susannah Fox, who gave us an advanced look at the results, we are able to bring you some reflections on this initial foray into measuring the impact of self-tracking.
Before we get to our discussion with Susannah it’s probably best to help set the stage with some of the most interesting findings.
Overview of Tracking
- 69% of adults track a health indicator for themselves or others.
- 34% of individuals who track use non-technological methods such as notebooks or journals.
- 21% of individuals who track use at least one form of technology such as apps or devices.
In our daily lives, we are keenly aware of the power of each of these individual concepts. However taken together, their influence on our wellbeing, to borrow a phrase from my friend Karen Herzog, “our wholeness”, is exponentially influential. So why do they seem to rarely coalesce during our conversations, discussions, and interactions with the individuals and institutions tasked with tracking, diagnosing, and treating the cracks and fissures in our wholeness?
This is the first in a three-part series about the data we produce about our health and how we communicate that information to the medical system, specifically the providers of care. We’re starting from the perspective of the patient because we’ve all been there. Whether it was a routine check up or a 3AM visit to the emergency room, we’ve all had to relay information to a medical provider about out health. So what happens when we’ve collected, stored, and tried to understand our own health information in preparation for those visits?
Our guide today for the patient perspective of health data communication is Katie McCurdy. Katie is a user experience designer and researcher living and working in New York. She is also living with Myasthenia gravis, an autoimmune disease that causes muscle weakness in voluntary muscles. Like many individuals with autoimmune diseases, Katie spend a lot of time communicating and working with the medical system. These visits, although regular, were a point of contention between Katieand the individuals entrusted with her care. So when she was going to see a new physician for the first time she decided to apply her interaction design knowledge and skill. She’s talked about this on her blog and on the e-patients.net blog so I’ll let here words speak for themselves:
As I was getting ready to see a new doctor, I realized that the best way to tell my story would be to create a medical “life story” timeline that reflected:
- The course of my autoimmune disease
- Severity of my gastrointestinal problems
- Key moments in time when I started and stopped certain medications or took antibiotics
- Any significant dietary changes
I sketched out the two timelines (autoimmune and gastrointestinal) separately, and then created them electronically using Adobe Illustrator. (I’m an interaction designer by day, so fortunately I had the skills/know-how to create a somewhat legible artifact.) I used a peach color to represent gastrointestinal wellness/symptoms, and a blue color for Myasthenia Gravis.
QS: Why visualize? Do you think doctors are more receptive to the visual translation of data rather than the raw numbers that are commonly associated with health data?
KM: For me it’s about creating a representation of my history and my health that can be communicated most efficiently. I believe in the power of visualization to help tell stories that wouldn’t be possible with raw data alone. Knowing I would be ‘on the spot’ during my doctor visit put the pressure on to make something that would help me tell my story as succinctly as possible. Also…because I was not tracking my data (it’s all from memory) I didn’t have the raw data to share anyway!
QS: I’ve been thinking about the doc-patient relationship a lot lately. It seems the walls of authority are crumbling as we speak and we’re moving from a “You do this” or “You listen to me” type of authoritative approach to medicine to more conversational. How do you see data and visualizations helping to start and possibly support those conversations.
KM: I see it as, like you said, changing the dynamics of the relationship so that the patient is more of a partner in care. By tracking data, the patient can provide a more refined and nuanced picture of what is really going on with them. By visualizing that data, the patient is helping the doctor absorb the information more painlessly. The patient is providing contextual information about his or her OWN situation that compliments the doctor’s past experience, expertise, and test results.
QS: You mention in your post that the reception from patients and caregivers has been really positive, how would do we help make it a positive and rewarding experience for the providers as well?
KM: I think that giving patients tools to create simple, clean, and attractive visualizations could help make the experience better for doctors. If doctors are presented with high-quality visualizations that tell a coherent story, it may make office visits more efficient. Imagine if the doctor could work with the patient and suggest a type of graph or visualization that would be most helpful.
QS: What tips or advice would you give to someone who is taking their data to their doc for the first time?
KM: I suggest using the data as a storytelling tool. Bring a printed artifact or something on a tablet to refer to, and point out the highlights as you talk about what’s been going on with you. Don’t be disappointed if they don’t comment on your beautiful data and all of the work you put into it. Ask if there is anything you can do to to make the data more legible/easy to understand for the doc.
QS: You mention that self-tracking has given you better insights into your own health and that you’re even trying some self-experimentation like a no-carb diet. How do you think self-tracking and data communication with physicians can support patient-initiated health experimentation?
KM: Ah, I think self-tracking and visualization can help increase patient compliance! My low-carb diet was actually prescribed by my doctor. When I saw on the timeline that my diet changes were strongly correlated with my gastro symptoms improving, it was very reinforcing of my diet behavior. I mentioned antibiotics in my post. Now, if I even think of asking for antibiotics, all I can see in my mind is the number of antibiotics I took as my stomach issues got worse and worse. That is a big change in my outlook that resulted from internalizing the data I was seeing on the timeline.
QS: Who are your design/data viz heros? Anyone who really inspires you in your health visualizations?
KM: I have a few data viz heros! Jer Thorpe, of the new york times, makes beautiful interactive data visualizations and is one of the best speakers I have ever seen. Nicholas Felton, of Feltron and now a designer at Facebook, is a compulsive self-tracker who releases a gorgeous printed yearly report. I love Mortiz Stefaner’s work as well. I am really inspired by the natural world and the work of 19th century plant and wildlife documentor Ernst Haekel. I am also inspired by the awesome patients I’ve met and the folks on e-patients.net who remind me that patients need to be their own advocates.
We also have some questions from Susannah Fox, who was kind enough contribute her thoughts and insights to this piece:
SF: Would Katie care to comment on that from her own experience? That is, is it only recently that she has both found the right tools and that her own clinicians are interested? Had she attempted something earlier, with pencil & paper? What has made the difference?
KM: I never did anything before this apart from bringing notes to my doctor visits – things to remember to say. I literally had a realization one day at work and wrote an email to my personal account with the subject: ‘very important idea.’ :) I think the idea had to incubate for a few years before it bubbled up.last fall.
My goal is to keep pursuing this idea and work toward creating a tool for patients so they can at least assemble their own health timeline, and perhaps even track their data more regularly. I am holding interviews with patients, patient caregivers (or parents), and people who are active self-trackers; if you are interested in donating about 30 minutes of your time, email me at kathryn.mccurdy at gmail.com.
Again, this is part one in a three-part series on the data centric conversation we engage in with the medical community. Look for our next part with insights from Dr. Eric Topol and Dr. Larry Chu next Thursday. If you have questions of comments feel free to discuss on Facebook, Twitter, and here in our comments.
The report is called The Social Life of Health Information, and has several interesting findings. Here is an excerpt:
Carol Torgan, a health science strategist, points out that anyone who makes note of their blood pressure, weight, or menstrual cycle could be categorized as a “self-tracker.”10 Add an online component, and you have the ingredients for a social health application or an electronic health record. Our survey finds that 15% of internet users have tracked their weight, diet, or exercise routine online. In addition, 17% of internet users have tracked any other health indicators or symptoms online. Fully 27% of adult internet users say yes to either question.
Wireless users are more likely than other internet users to track health data online. Eighteen percent of wireless users have tracked their weight, diet, or exercise routine online, compared with 9% of internet users who do not have a wireless-enabled laptop or other device. Nineteen percent of wireless users have tracked any other health indicators or symptoms online, compared with 11% of non-wireless internet users.
Separately, looking just at the 85% of adults who own a cell phone, 9% say they have software applications or “apps” on their phones that help them track or manage their health.