WIRED Health Conference: Living By Numbers

Katherine Kim, iN Touch Principal Investigator

What a privilege it was to attend the Wired Health Conference: Living By Numbers in New York City last week. Thanks, RWJF, for the invitation! Every talk offered something new, something surprising, or something provocative.

Something New

Nicholas Felton, a renowned graphic designer, talked about how he started producing the Feltron Personal Annual Report in 2006 because he wanted to tell the story of his life.  He evolved his process of data collection in three stages.  At first, he used “archeology,” leveraging data from records that already existed. These data included photographs, music downloads, subway rides. He found that 1% of his photos in 2006 included his cat. Next, he used “data hoarding,” collecting data expressly for the purpose of tracking.  During this two-year phase he collected every receipt and calendared obsessively. He became aware of how many “lethal doses of caffeine” he consumed in a year.  Now, he is “sampling” to help understand what he calls the intractable questions like what do I eat, how do I feel, who do I talk to, and what is my social network.  These data are difficult to collect constantly and often non-standard.  By analyzing free text comments through Mechanical Turk he discovered that he was 73% happy, or in his personal dictionary, “swell.”

Something Surprising

Nicholas Christakis of Harvard’s Human Nature Laboratory discussed social networks and how they can be more influential than mass media on people’s behavior.  His research on social networks related to obesity showed that it the condition was contagious: individuals whose immediate network included a friend, sibling, or spouse who became obese were more likely to become obese (57%, 40% and 37% respectively).  Even those who were one or two individuals removed were more likely to be obese. This was not the case for geographic neighbors.  This effect can also apply to positive health states.

Something Provocative

Jennifer Kurkoski and Brian Welle of Google’s human resources organization showed how asking big questions could lead to breakthroughs.  The question they asked was “What if working at Google added two years to your life?”  This led to their redesigning access to food on their campus from smaller plates in the cafes to placing M&Ms in opaque containers while putting healthier options in see-through bins.  Their early surveys are showing that employees like these changes and they are making healthier choices.

As we consider our next steps for iN Touch, I wonder: what if going to a high school with iN Touch added five years to a youth’s life? How could we evolve our approach to self-tracking of ODLs to identify the key signals?  And, what would a school need to leverage the social network that lives within it to make health contagious?

 

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Terrific attendance at Project HealthDesign webinar

Wendy Swanberg, Communications Coordinator, Project HealthDesign National Program Office

More than 200 people signed up for last week’s webinar, "From the iPhone to the EMR: Can patients' personal health data help improve their clinical care?” to learn about the latest work by Project HealthDesign’s grantee teams.  Co-hosted by Stephen Downs of the Robert Wood Johnson Foundation (RWJF) and Patricia Flatley Brennan of the National Program Office, the webinar set a wider lens on the growing interest in weaving patient-generated data into the matrix of clinical health care.   

Steve Downs explained that as part of RWJF’s Pioneer Portfolio, Project HealthDesign was created to stimulate innovation in the area of personal health records.  “We laid out a vision where your medical record would serve as a platform” he explained, “and then lots of third-party apps could be tailored to your specific needs.”  The project’s five research teams took that vision and created applications tailored for patients with chronic conditions, from asthma to obesity to Alzheimer’s disease.

Project director Patti Brennan described what might be the most significant finding to arise from the project, the discovery that information from patients’ daily lives -- data about things like diet, mood and stress level – can play an important role in managing health care.  These “Observations of Daily Living,” or ODLs, became central to the grantees’ research projects and represent a significant, new category of patient-generated data.  Brennan also introduced a short video where members of each project team illustrated their projects’ findings and challenges.

Project investigator Katherine Kim described how her team’s iN Touch application helped young people struggling with obesity to become more engaged in managing their health and lifestyle.   Dr. Stephen Rothemich outlined findings of his team’s BreathEasy project, showing how ODLs can provide clinically useful information and in some cases can lead to changes in diagnosis or therapy. 

Finally, National Advisory Council member Dr. Michael Christopher Gibbons spoke eloquently of the critical role personal health records can play in a rapidly evolving society, where new approaches are needed to tend to the needs of a growing population of seniors, minorities, immigrants and the underserved.  

If you registered for the webinar but weren’t able to view it, follow this link and log in with the email address used at registration.

Project HealthDesign at AcademyHealth’s 2012 Annual Research Meeting

Libby Dowdall, Communications Coordinator, Project HealthDesign National Program Office

Two Project HealthDesign principal investigators will join other health services researchers at AcademyHealth’s 2012 Annual Research Meeting. The event will be held June 24-26 in Orlando, Florida. iN Touch Co-Principal Investigator Katherine Kim, M.P.H., MBA, and BreathEasy Co-Principal Investigator Barbara Massoudi, M.P.H., Ph.D., will give podium presentations during the Consumer Informatics and Mobile Health panel on Sunday, June 24 from 9-10:30 a.m. EST.

Kim will present an abstract titled "iNTouch: Impact of a Mobile App for Overweight and Obese Youth.” Co-authors include Christina Sabee, iN Touch co-principal investigator; Holly Logan, iN Touch project manager; and Janelle Charles, iN Touch research assistant. The iN Touch team is based out of San Francisco State University’s Health Equity Institute.

Massoudi will present an abstract titled “Project HealthDesign's BreathEasy: A Personal Health Application for Adults with Asthma.” Stephen Rothemich, M.D., BreathEasy co-principal investigator is co-author. The BreathEasy team is a cooperative effort of RTI International and Virgina Commonwealth University.

Other panelists for this session will include Changmi Jung, a Ph.D. candidate at Carnegie Mellon University, and Stephanie Shimada, Ph.D., a research health scientist at Bedford VA Medical Center.

Learn more about AcademyHealth’s 2012 Annual Research Meeting.

Read past posts from the BreathEasy team.
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The Second Time Around

Refining iN Touch for a Second Cohort

Holly Logan, M.A., iN Touch Project Coordinator, San Francisco State University

During the first cohort, we came across many challenges; some we had anticipated and others surprised us. These learnings allowed us to refine our design and conduct a second cohort. For the second cohort, each participant started out with health coaching only for two months, then received an iPod Touch, and coaching plus TheCarrot’s customized iN Touch application for two months. The refinements addressed the three major challenges faced by the first cohort: 1) Access to Wi-Fi, 2) Coaching protocol, and 3) Staying in contact with the participants.

Many participants told us that the number one reason they had problems with recording their ODLs was because they did not have Wi-Fi at home and did not know where to access it. Although we had installed a Free Wi-Fi Finder app on their iPods, it still seemed that the participants faced a major obstacle when it came to finding Wi-Fi to record their ODLs. To address this issue, we asked Mission High School for permission to give the participants the Wi-Fi password at school. They agreed, so during the iPod provisioning, we entered the password into each device and informed the participants that they could record their ODLs during lunch and after school. This has been working well for the new cohort.

The second challenge was the initial health coach protocol we had created, which detailed how the health coach should direct participants about what to record, when to record, etc. For the first cohort, we sent reminders to ask participants to record, but we didn’t have a set schedule of what we wanted them to do on a weekly basis. For the second cohort, we developed a Health Coach Guide that the health coach was to follow each week when meeting with the participants. This included setting goals, asking participants to record, checking in through text messages and updating the health coaching logs as well as measurements at each visit. This has helped keep the coach and participants better engaged through each step.

Finally, communicating with the patients and scheduling them to come down during school hours was an issue with the first cohort. We had been using a texting application called Text4Plus, but a lot of the participants were not getting our texts. We had no way to know if they had received our messages or not. For the second cohort, we updated all of the iPods by installing iMessage, and sent and received messages through that application. iMessage allowed us to verify whether a message had been delivered.  If it did not say ‘delivered,’ we knew to send it again until it was delivered. This has helped us stay in better contact with the second cohort, and we have been able to easily let them know when we have sent a pass for them to come see us during school hours.

We are now in the third month of the new cohort, and we may still face challenges in the next two months. However, we’ve had a lot of success with giving the participants the Wi-Fi password, following a detailed protocol and keeping in contact with them through iMessage.

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The iN Touch Approach to Device and Data Security

Holly Logan, iN Touch Project Coordinator, San Francisco State University

When we issued iPod Touch devices to participants, we knew some would be lost or stolen. We installed the Find iPhone application on each device that would allow us to locate a missing device, send messages, lock or wipe it.

The first time a participant came to us to inform us that their iPod Touch had been stolen, we took the necessary precautions: we locked it right away, sent a message to the iPod Touch indicating it was now stolen property and waited for it to hit Wi-Fi so that we’d be able to locate it. That was the catch. In order to be able to locate or wipe the device, it had to connect to Wi-Fi. And to throw in another step, when you choose to remote wipe the device, you can no longer locate it. So you have to take your chances here and work with the participant to see if they think they will be able to ask around and locate it, or think of who could have taken it and from where, etc. That was where it was tricky: Was it really stolen and gone forever, or was it temporarily misplaced?

When our first “situation” arose, the health coach had only spoken with the participant, who had said it was stolen. We decided to lock the device remotely and wait for it to hit Wi-Fi. In the meantime, we met with the participant to see what they thought about the device’s status. We asked “Do you know who stole it? Do you think you will be able to get it back?” When we determined that the participant knew who had stolen it, that they were adamant that they would never be able to retrieve it, and that they did not feel comfortable accusing the person, we decided to remotely wipe all data from the device.

However, we followed another process if we had reason to believe that the iPod Touch was simply lost, because we knew we might be able to recover the device. This happened with one participant who called and told us she had lost her iPod Touch after a day of running errands. She had searched her house high and low and looked in her car. The last place she remembered having seen it was when she was at Target.  I immediately locked the device and sent a message to it, which indicated that it was lost property and needed to be returned. Luckily the iPod Touch was going in and out of Wi-Fi, so I was able to see the location. When I told her the location, it turned out it was at her address. I asked her whether a neighbor could have taken it, or if she could have left it in her car. I had her go into each room and listen as I triggered a sound on her device. She still couldn’t find it. She decided to check her car, and I continued to play the sound. She finally heard it and found it jammed under the passenger seat of the car.  Thankfully, we had decided to search for it before remotely wiping it, otherwise all of her data would have been gone forever. When a device was reported lost, we decided it was important to give it at least a week to try to locate it. After that time, and if it was still lost, we decided it was a good idea to remotely wipe it as a security measure.

Unfortunately for all of the participants whose iPod Touches were stolen, none of them were returned, and we ended up wiping them all once they hit Wi-Fi. In each instance, the Find iPhone app has turned out to be a valuable tool that allows us to take the right steps to ensure the privacy and security of the participant’s health data and to  help the participant locate their device.

Images courtesy of Find iPhone app

If I’d Only Known Then What I Know Now (A Letter to Myself)

Katherine Kim, M.P.H., MBA, iN Touch Principal Investigator, San Francisco State University

Dear Kathy,

Three years from now you are going to be finishing the iN Touch project. You’ll have done some things well, made plenty of mistakes, and learned so much. I’m writing this letter to share some of those lessons.

1. You and Christina made the right decision to apply for the Project HealthDesign grant, even though you were worried because those grants from the Robert Wood Johnson Foundation are so competitive.


2. When you start hitting road bumps, lean on your team. Christina, Hali, Judy, Cam-tu, Holly, Ed, Janelle, and Yulia will amaze you with their creativity, optimism, gumption and all-around smarts.


3. The IRB approval process will take twice as long as you expect. The phased IRB that Barbara Massoudi suggests will be the way to go. Submit the application design and testing IRB right away, then work on the intervention IRB which will probably undergo some changes based on the testing. Just-in-time IRB will not be soon enough.


4. Recruitment will take twice as long as you expect. Prototype your recruitment process with the clinicians and staff. Don’t be discouraged by the disconnected phone numbers and no-shows. Remember that life is complicated and messy for the patients. Start recruiting as early as possible.


5. Over-recruit. I just said life is complicated and messy for patients. Even if they want to finish the study, a third of them won’t be able to. Don’t feel bad, this is typical for health and lifestyle studies and those studies with younger and minority participants have even higher dropout rates. You’ll need to recruit more to compensate.


6. Developing attractive, useful reports of ODL data will be harder than you expect. The clinicians won’t know exactly what they want so you’ll have to start out with a mock-up. Recruit a visualization/design expert next time.  Oh yeah, the hospital, clinic, and school will all be on different browsers and versions and they won’t want to update just for you. So make sure to test the reports on multiple browsers.


7. Use multiple communication modes for reminders and scheduling. Paper notes still work!  Deliver them to the classroom to remind youths to come to their appointments. Some of them will want reminders to record ODLs through their iPod Touches, others via text messages to their phones. Forget about email – they never check email.


8. Be ready to educate and evangelize. Hospital, clinic, and school staff members haven’t heard of observations of daily living (ODLs) before and they’re not sure how they feel about mobile technology. You are not just asking them to partner with you on a project, you are asking them to change how they work and engage with patients.


9. The youths who participate in the study will amaze you. They are motivated and excited to use the technology and new strategies to meet their health goals. They’ll teach you a lot about improving health behaviors.

Have a great time with the iN Touch project.

Kathy

Is Theory-based Design Practical?

Katherine Kim, M.P.H., MBA, iN Touch Principal Investigator, San Francisco State University

A meta-review by Webb, et al.² showed that Internet and mobile health interventions designed based on a behavioral theory resulted in better health outcomes with larger effect sizes than those that were not based on a theory. Of the studies included in the review, those that had used Aizen’s Theory of Planned Behavior were the most successful in improving health outcomes. Aizen’s Theory states that individual attitudes and social norms contribute to motivation. But, motivation alone is not sufficient to yield behavior change. There must also be an adequate level of perceived behavioral control which means the individual must think they possess the ability to make the change (and have the capability to make the change). Sounds good, but how do you actually design based on a theory?

For iN Touch, here’s how we thought about it:

For motivation, we needed to elicit individual attitudes/beliefs/values and reinforce positive social norms. The health coach drew out the participant’s individual attitudes through conversation and reinforced the values of health, well-being, and empowerment to make change. She also facilitated self-reflection about the ODLs and identification of trends and patterns in the combinations of ODLs. Weigh-ins and measurements were also a form of reinforcement by revealing objectively whether behavior changes each person made were effective or not. These contributed to motivation in an ongoing way.

We spent a great deal of effort designing perceived behavioral control, using both online and offline tools. The iN Touch application itself was a tool for behavioral control because it allowed the participant to capture the ODLs, review them in real-time, and conduct ad hoc comparisons. We designed the application within a "Five Clicks, Five Minutes" (per day) rule our Youth Advisory Board provided to minimize data entry burden (Sabee, et al.¹). Our post last month provided a detailed overview of the application. The iPod Touch device itself is portable and highly accessible, further contributing to perceived behavioral control.

Offline, we provided participants with a “My Experiment” tool for weekly goal setting and action planning. The key to this coaching tool is it provides the participant a way to make a short-term commitment, prepare for any obstacles, assess their level of confidence, and plan for follow-up. It gives them permission to try out a behavior change and have full control over the conduct of their experiment.  

Finally, our intervention included multi-modal interaction with the health coach in order to provide support when and where the participant needed it, another way of putting control in the participant’s hands. Participants were able to meet with the health coach in person or by phone, during scheduled or drop-in appointments, and communicate via text message. All of these strategies contributed to perceived control by participants.

We used the theory of planned behavior to inform both design of the technology and programmatic elements. The use of health behavior change theory in technological design is still emerging. We are eager to hear about other examples where this has been applied. Please share your experiences with us in the comments.

References:

¹ Sabee CM, Kim KK, Charles J, Logan H, Young E. (October, 2011).  Five Clicks, Five Minutes: Providing a Voice for Youth with Obesity and Depression with a Mobile Health Platform. Manuscript presented at the International Conference on Communication in Healthcare: Chicago, IL.  

² Webb TL, Joseph J, Yardley L, Michie S. (2010). Using the Internet to Promote Health Behavior Change: A Systematic Review and Meta-analysis of the Impact of Theoretical Basis, Use of Behavior Change Techniques, and Mode of Delivery on Efficacy. J Med Internet Res,12(1):e4). doi:10.2196/jmir.137.

 

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iN Touch Mobile Application Overview

Holly Logan, iN Touch Project Coordinator, San Francisco State University

We worked with TheCarrot.com team to customize a mobile application for iPod Touch and iPhone. Our participants have been using this personal health application to capture their observations of daily living (ODLs). Here is a sample walk-through of how a participant may interact with the app:

1. Participants in our study first sign in to the application on their iPod Touch devices.
   
   
   
   
2. After they sign in, they come to a homescreen that manages their trackers. Users could choose to manage a variety of trackers,  but for the iNTouch study, participants have been asked to keep track of four trackers: exercise, food, mood and socializing.
   
   
   
   
3. Let’s say this participant, Jim*, just got home for the day and wants to record his activities and observations. First he decides to record what he ate with his friends that day. To do this, he selects “Food” on the “My Trackers” page and comes to the screen below:
   
   
   
   By adding a food and then searching for it, Jim can easily record what he ate with his friends. Let’s say he wants to add strawberries. He can type the whole word or just part of the word into the search box below:
   
   
   
   Once he finds what he wants, he clicks the orange plus button to add the food to his folder. When he's done adding the foods he's eaten, he selects the green save button in the lower right-hand corner. When he hits the save button, he is sent back to the “My Trackers” page.
   
   
4. Jim may then decide he wants to record his mood for the day. When he selects “Mood” on the “My Trackers” page, Jim comes to this page:
   
   
   
   Let’s say Jim is stressed out and sad because he should have been doing his homework instead of hanging out with his friends, and now he has a lot to do and is running out of time. He is also feeling angry and unhappy about this situation. By touching the orange plus button next to each emotion, Jim adds these moods to his folder and comes to this screen:
   
   
   
   The green check next to each emotion means that Jim has added that emotion to his folder. The folder is located in the top left-hand corner, where it shows that he has added four emotions. Once Jim moves the sliding buttons to note how intensely he feels each emotion,  he can hit save in the lower right-hand corner, which takes him back to the main “My Trackers” screen.
   
5. Let’s say Jim also wants to track the amount he socialized that day. When he selects the socializing tracker, he comes to this screen:
   
   
   
   This screen operates much like the “Moods” screen. Jim  tracks how much he socialized, whether people influenced him negatively or positively and whether people supported him a lot or not much. Let’s say Jim decides he wants to add some personal details about his socializing experience, so he decides to write a note by clicking the “Notes” button on the lower part of the screen. He then comes to the “Notes” screen:
   
   
   
   On this screen, Jim can write a note about what he did with his friends; once he’s done, the green save button takes him back to to the “Socializing” screen:
   
   
   
   When he’s done entering his information, Jim can select the green save button to go back to the main “My Trackers” menu.
   
   
6. Finally, Jim remembers to  record his exercises from the night before in the “Exercise” tracker. When he selects “Exercise” on the main “My Trackers” menu, he comes to this screen:
   
   
   
   On this screen, Jim searches for his exercise and adds what he has done by hitting the orange plus button. When he adds running as an exercise entry, he comes to this screen:
   
   
   
   Because Jim is adding an exercise entry for the previous night, he needs to correct the date and time. When he selects the calendar image at the bottom of the screen above, he is taken to the screen below, where he can change the date and time before selecting the green save button (in the upper right-hand corner), which takes him back to the “Exercise” screen. 
   
   
   
   Once Jim saves his exercise entries and finishes recording his observations for the day, he can take a look at his progress by looking at his “Journal.” To get to the “Journal,” Jim clicks the notebook symbol at the bottom of the screen to review his “Journal,” which displays his progress.
   
   
   
   

Our participants seem to accept our app well, and they report that it is pretty easy to use and takes only a few minutes a day. We are doing exit interviews as participants complete our study, so we’ll be able to share more of their feedback in a future post.

*Jim is not a real participant in the iN Touch study.

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Balancing Patients’ and Clinicians’ Needs [Video]

Libby Dowdall, Communications Coordinator, Project HealthDesign National Program Office

 

iN Touch Co-Principal Investigator Katherine Kim, M.P.H, MBA, talks about some of the challenges her team has faced as they’ve implemented their study. These challenges include:

Balancing patients’ and clinicians’ needs when developing PHR applications and dashboards.
Participants in the iN Touch study say they want to review their ODL data on a daily basis to they can reflect on the patterns and make changes as needed. However, clinicians say they want to see summary reports of the ODL data on a weekly or monthly basis and before their patients come in for visits.

Integrating patient-generated ODL data into clinical electronic health record (EHR) systems.
Clinicians aren’t likely to visit an additional portal or external system to review patient-sourced ODL data; the data must be integrated into existing clinical EHR systems and workflows. However, Meaningful Use requirements have prompted extensive changes to many hospital EHR systems. Because of these changes, hospital IT departments are currently less available to help with ODL data integration.

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Sarah’s Story: Six Months of Determination, Health Coaching and Observations of Daily Living

Katherine Kim, M.P.H., MBA, iN Touch Principal Investigator, San Francisco State University

Sarah* was a 214-pound, pre-diabetic high school student who hated comments her peers made about her appearance. When she first met the iN Touch health coach, Sarah shared that she regularly ate fast food, drank soda and cut class. She wanted to focus on eating healthier and exercising. Sarah and the coach discussed different types of exercises and worked together to create backup plans in case she was unable to do her intended exercise.

Sarah planned to record her observations of daily living (ODLs) about her food, exercise, socializing and mood in TheCarrot.com’s iN Touch application a few times a week. She began recording her ODLs and found it was easy enough to do. She also used the notes section to intensively journal about her path to a healthier life. Sarah texted the health coach and took advantage of in-person coaching visits to talk about her challenges, strategies and progress. She also continued to see her regular physicians and nurses.

By the third month of participation she reported that she was cutting fewer classes. She now regularly power walks with hand weights and started taking dance classes over the summer. She has eliminated fast food, chips and sodas from her diet. Instead, she carries healthy snacks in her purse and drinks only water. At the end of 6 months of participation, Sarah has lost more than 20 pounds.

Sarah is one of the first wave of participants to complete the study this month. While we wait to collect our complete set of evaluation data, we looked at frequency of usage of the technology to see if we could find clues to Sarah’s success. To date, 33 participants have entered 1,794 ODLs, not including notes. (Note: most participants have not yet completed their six months.) Recording frequency varied, and individuals ranged from one ODL recorded to 230 ODLs recorded with an average of 54 ODLs recorded. Sarah recorded 117.

Sarah’s size is not the only change. “I have confidence,” she says,  “I feel this is my year. Now if people want to come at me with drama, I’m just like, ‘I don’t care.’ I’m going across that stage. I’m going to a 4-year college. Twelfth grade is my serious year.”  She says she plans to continue using her iPod Touch and free TheCarrot.com application to improve her health.

*Not her real name.