Reflections from the First Two Months of Data Collection

Karen Cheng, Ph.D., Estrellita Co-Principal Investigator, University of California, Irvine

About two months ago, we did our first baseline interview. So far, four parents have started in the intervention group (and have received mobile devices with our app) and two parents in the comparison, or control, group. Two more participants are scheduled to start the study by the end of this week.

So far, our intervention participants have given us very positive feedback that they enjoy using the Estrellita system. The two families with the sickest babies seem to be the most consistent in recording their observations of daily living (ODLs), and one of those families even reported using their baby’s ODL data during an appointment with a specialist.

Not surprisingly, most of our participants identify themselves as early adopters of new technology — even if they cannot afford (and therefore do not have) the newest technology.  They report being drawn to this study for the opportunity to use the latest technology.

One interesting discovery was that parents were concerned about weighing their babies when the weather became colder. We were not seeing weight data come in regularly for most of the babies, and we gently reminded parents to let us know if they were having any trouble with the scales. One parent finally responded, explaining that her baby had been sick and she was reluctant to put him naked on a cold scale. An EDAC case manager contacted the parent and explained how to zero out the scale with a blanket and then put the baby on the scale. Problem solved, and weight data came in the next day!

As difficult as recruiting has been, scheduling the interviews has been just as difficult and maybe even more difficult. I spent much of last Friday afternoon in my car in the parking structure of CHOC Children's Hospital, waiting for a participant to return from an unexpected errand for our scheduled interview. My colleague, Karen Tang, spent all of Friday afternoon in a parking lot in another part of Orange County, waiting for a different participant. That participant missed her scheduled interview as well.

I look forward to our upcoming mid-study interviews, and hope to learn more about parents’ experiences with the Estrellita system and their overall strategies for managing their children’s health information in the midst of such hectic lives.

Learn more about the Estrellita (formerly FitBaby) project.
Read more posts from the Estrellita (formerly FitBaby) team.

Creative Commons photo by biblicone.

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

Patient Uncertainty as a Motivator for Study Participation

Kathleen Morrison, M.P.H., Crohnology.MD Project Co-Director, Health Communities Foundation

Medical sociologists and public health experts have recognized the important role that patient uncertainty plays in the lives of patients with chronic diseases for decades.¹ Fifty years ago, the standard paradigm in the health care system was one of profound information asymmetry, whereby patients depended on physicians to inform them of all aspects of disease diagnosis and treatment. As the disease burden in the U.S. shifted from primarily acute disease to primarily chronic disease, the roles of patients and providers have barely changed. Because chronic disease has no cure, requires patient engagement for effective treatment, is best addressed if the patient is knowledgeable about consequences of the disease and its therapies, and is most effectively treated if the patient and provider collaborate, it requires a different level of patient engagement than acute disease.² These concepts of patient-centered care and patient management of their own information are at the heart of the Project HealthDesign mission, and promise to forever alter the role patients play in the treatment of their diseases.

Crohn’s disease disproportionately impacts young adults. The average age of onset is 15-30 years, a time when many people make the most important and long-lasting decisions of their lives. When we interviewed a small sample of our Crohnology.MD patient cohort, before we deployed the technology for the study, we asked them what the most difficult aspect of living with Crohn’s disease was. It is noteworthy that 100% of the patients interviewed cited uncertainty about their future disease symptoms as the most difficult aspect of living with Crohn’s and as the primary motive for wanting to participate in this study. Patients who were healthy at the time of the interview were worried about when they would get sick again, and how sick they might become. Patients who were suffering from active disease symptoms worried about the unknown: How bad would their symptoms get,? When would their symptoms end? A couple of patients noted that, in some ways, it was easier when there was a disease flare, because then there was no uncertainty – it was clear that the only option was to stay in bed. As the interviewer, my heart went out to our patients; as a researcher, I felt that they were spot-on in deciding to enter this study. Our patients have chosen the observations of daily living (ODLs) that they feel are relevant to their life and health, and they are now able to view the ODL data they’ve recorded and look for ODL interactions and trends in the mobile app we developed for this study.

Going forward, we hope that the patients who use our technology will be able to identify ODLs (either individually or in groups) that directly impact both wellness and disease severity. We would also hope to see improved patient/provider collaboration, and perhaps even time and cost savings associated with more efficient (or reduced) clinical appointments. In the short run, however, if we can help patients reduce the stress associated with their uncertainty about their disease, by engaging them in monitoring and reviewing their data and providing an avenue to make associations between ODLs, medications, and well-being, then perhaps we will be addressing the patients’ #1 concern. Not too shabby.

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¹ Davis F. Uncertainty in Medical Prognosis, Clinical and Functional. Am J of Soc 1960.

² Holman H , Lorig K. Patient Self-Management: A Key to Effectiveness and Efficiency in Care of Chronic Disease. Pub Hlth Rep 2004;119:239-243.

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Learn more about the Crohnology.MD project.
Read more posts from the Crohnology.MD team.

Build It and They Will Come: Can Technology Change Behavior?

Murrey G. Olmsted, Ph.D., BreathEasy Senior Methodological Advisor, RTI International

I recently heard a story on the news about the famed “Field of Dreams” farm in Dyersville, Iowa. This story reminded me of the approach taken with personal health records (PHRs) and health tracking devices over the past decade. Well intentioned clinicians, researchers, technologists, and others have brought many products to the market and have assumed that if you build a new device or PHR then people will use it to improve their health. As a result, we now have electronic devices that track steps taken, food consumed, water drunk, hours slept, and many other indicators of health and health-promoting behaviors. Now even our smartphones can provide many of these functions via apps that take advantage of motion sensors, GPS tracking, photo uploading, social networking, and barcode scanning. One common feature that most of these tools share is that they are tied to a record system such as a diary, tracking log, or PHR.

This all sounds great! More technology to enhance health that is portable, easy to use, and probably works on the smartphone I already have. If I were only to read the promotional literature, I might be convinced we are heading toward a golden age of health improvement with technology leading the way.

However, there is some trouble in the world of PHRs and health-promoting technologies:

• First, the annual CDC reports indicate that on average people are still significantly overweight, developing diabetes at alarming rates, and struggling with many chronic health conditions.
• Second, most devices or record systems don’t talk to each other. For instance, my smartphone tracks walking and running data on a website provided by a major sports manufacturer. The record is great in terms of helping me track my activity and communicate with my friends, but it does not connect to my own physician’s clinical electronic health record (EHR) or any other system that I have.
• Third, the PHR used at my doctor’s office provides tools for tracking my historical health data, but does not provide any help on what steps I need to take to enhance my health going forward; this is a common problem with PHRs, as most serve only as patient information portals rather than offering the full functionality needed.
• Fourth, the options for consumer-oriented PHRs are declining. For instance, Google Health announced earlier this year that they would be shutting down their PHR service at end of 2011 due to the lack of broad consumer adoption. As a result, I now have to choose between the PHR offered by my doctor or one of the few remaining national PHRs still available (e.g., Microsoft HealthVault, WebMD PHR, etc.).

So what’s the problem? I thought we had the technology? 

It turns out—not surprisingly—that behavior is difficult to change. Technology is great and people generally enjoy using it, but the impact is frequently not long-lasting unless fundamental behavior change occurs. To do that, the current crop of technological solutions will need to address not only the challenges listed above (in particular connecting all patient records), but will also need to help users change their behaviors. Published research is increasingly citing the need for behavior change as a key component of health-promoting technology. Also, authors are beginning to draw the distinction between PHRs that function as health information banks (e.g., look-up systems for lab results) and those that are truly ‘personal’ which can be customized to the needs of the user. What is really needed are tools that can serve the specific needs of users by guiding and encouraging them along in their journey toward behavior change, not just simply track their data and hold it for safekeeping. If the technology can make this shift, then we may start to see better results in those annual CDC reports.

Let us know what you think: How is behavior change key to successful health technology development and use?

Learn more about BreathEasy.
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Developer Challenge Roundup

Libby Dowdall, Communications Coordinator, Project HealthDesign National Program Office

From new PHR platforms to creative mobile health applications, the opportunities for improving health and health care seem to multiply daily. We hope to see more developers and designers become passionate innovators in the health and health care space. Participating in developer challenges such as these upcoming opportunities might help you catch the vision!

Robert Wood Johnson Foundation Challenge

Aligning Forces Challenge

• The challenge: Develop an application that builds on the publicly available Aligning Forces for Quality (AF4Q) health care quality measures and helps patients access better care.
• Requirements and desired functionality: The application should incorporate AF4Q health care quality measures, allow patients easy access to inpatient and outpatient health resources, and guide them through the decision-making process.
• End of submission period: December 31
• Learn more or register for the challenge.

ONC i2 Challenges

One in a Million Hearts Challenge

• The challenge: Develop an application that empowers individuals to improve their heart health.
• Requirements and desired functionality: The application should educate individuals about the Million Hearts initiative, allow individuals to input information about their current health state, use the health data they provide to generate targeted recommendations about how to improve their heart health, and be capable of transferring the individual’s information to an EHR using Direct specifications.
• End of submission period: December 31
• Learn more or register for the challenge.

popHealth Tool Development Challenge

• The challenge: Create an application that leverages the popHealth open source framework and provides greater insight into patient populations (e.g., help clinicians improve patient safety, help providers engage patients and families, etc.).
• End of submission period: January 20
• Learn more or register for the challenge.

Reporting Device Adverse Events Challenge

• The challenge: Develop an application that facilitates the reporting of adverse events related to patient use of medical devices in hospitals, clinics and home environments.
• Requirements and desired functionality: The application should allow patients to record adverse events easily, integrate with EHR and PHR platforms, capture patient demographic information, capture information about the medical device, be platform-agnostic, and employ NwHIN standards.
• End of submission period: February 3
• Learn more or register for the challenge.

popHealth Tool Development Challenge

• The challenge: Work with a public health expert to co-create an application makes it easy for users to use the Healthy People 2020 Leading Health Indicators (LHIs) in meaningful ways.
• End of submission period: March 9
• Learn more or register for the challenge.