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Service Delivery Innovation Profile

Patients With Crohn’s Disease Report Symptoms and Behaviors Through Computer Applications, Leading to Better Self-Management and Provider–Patient Communication


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Snapshot

Summary

In a 9-month pilot test of two tablet-based disease management applications, adults with moderate to severe Crohn’s disease tracked nine different types of "observations of daily living"—cues about health that people experience in their daily lives. Patients entered information on six self-reported observations through an application on a smartphone or tablet computer and used two biometric devices (a "smart scale" and sleep/activity monitor) that automatically transmitted information on three other observations (weight, sleep time, and activity) to the application. Patients accessed a separate application to view trend line depictions of their symptoms, health-related behaviors, medications taken, and laboratory test results, using the information to inform their behaviors (e.g., sleep, diet, physical activity, impact of medications taken). Patients also shared this information with their providers, using it to inform discussions and improve patient–provider collaboration around care, including medication adjustments. The program increased patient tracking of symptoms, behaviors, medications, and laboratory results, which in turn facilitated a better understanding of the interactions among these health cues. The program also stimulated positive changes in health-related behaviors and medication regimens, improved patient–provider communication, and generated high levels of patient satisfaction.

Evidence Rating (What is this?)

Moderate: The evidence consists of pre- and post-implementation survey and interview comparisons of a convenience sample of 30 patients regarding the proportion who tracked symptoms of health-related behaviors, along with post-implementation survey and interview feedback on the program's impact on patient understanding of the link between behaviors, symptoms, medication regimens, and laboratory test results; the quality of provider–patient communication; and patient satisfaction.
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Developing Organizations

Healthy Communities Foundation; iMedic8; University of California, Berkeley - School of Public Health; University of California, San Francisco Center for Colitis and Crohn's Disease
The Healthy Communities Foundation received assistance from clinicians at the Center for Colitis and Crohn’s Disease at the University of California, San Francisco and from researchers at the University of California, Berkeley School of Public Health.end do

Date First Implemented

2011

Problem Addressed

Crohn’s disease is an inflammatory bowel disease, which disproportionately affects young adults and has a significant clinical and social impact on patients. Patient self-management is a critical component of care, and providers prescribe medications and adjust treatment depending on patients’ self-reported symptoms and behaviors. However, patients typically find it difficult to reliably track and report on these symptoms and behaviors over time.
  • A complicated disease: More than 600,000 people in the United States have Crohn’s disease, a chronic and progressive inflammatory disorder of the digestive system, with an average age of onset between 15 to 30 years. Symptoms can range from mild to severe and may include frequent pain, diarrhea, fever, fatigue, anemia, reduced appetite, and weight loss. Those with the disease often face significant social and emotional challenges as well.1,2
  • Treatment based on difficult-to-track, patient-reported symptoms and behaviors: Crohn's disease can be complicated to treat, as no single evidence-based standard of care exists. Instead, treatment (e.g., medications to manage symptoms and pain, lifestyle changes) varies by patient depending on disease severity, treatment history, and his or her self-reported symptoms and behaviors. To receive the most effective treatment, optimized communication and collaboration with providers are necessary. The patient narrative is more thorough if patients can track symptoms and behaviors over time and then adjust behaviors such as sleep, exercise, diet, and medications in response to these trends. At the same time, providers must rely on patients to report on the effectiveness of medical therapy, as well as lifestyle changes on their overall health and well-being. Although some patients have been able to perform these tasks using paper-based methods, the majority do not have a reliable or convenient way to monitor their symptoms and behaviors over time, or easily and accurately share this information with their providers.

What They Did

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Description of the Innovative Activity

In a 9-month pilot test of two tablet-based disease management applications, 30 adults with Crohn’s disease tracked nine different types of observations of daily living (ODLs). Patients entered information on six self-reported ODLs through an application on a smartphone or tablet computer, and used two biometric devices (a "smart scale" and sleep/activity monitor) to automatically transmit information on three other ODLs (weight, sleep time, and activity) to the application. Patients accessed a separate application to view trend line depictions of their symptoms, health-related behaviors, medications taken, and laboratory test results, using the information to inform their behaviors (e.g., sleep, diet, physical activity, impact of medications taken). Patients also shared this information with their providers, using it to inform discussions and improve patient–provider collaboration around care, including medication adjustments. Key program elements are outlined below:
  • Self-reported ODLs: During the pilot test, 30 adults (ages 19 to 65 years) with Crohn’s disease cared for by providers at the University of California, San Francisco recorded six different types of ODLs for 9 months using a software application on a tablet computer known as Chronology.MD. Patients entered data at their discretion, generally doing so at least once a week and no more than three times a day. During the study, patients entered more than 28,000 ODLs. Three of the ODLs (abdominal pain, energy level, and stress level) were rated on a severity scale of 1 to 10. Two other ODLs (medications and laboratory test results) were entered when the patient wanted to update information (to track test results, note new medications, describe medication adherence, etc.), whereas a sixth ODL (known as "journaling") allowed patients to capture observations that fell outside the designated categories. In addition, patients could enter information about trigger foods or submit questions for their provider, to be asked at the time of the clinical encounter.
    • Biometric devices to track additional indicators: Two biometric devices automatically uploaded data related to three additional ODLs—sleep, activity, and weight—as outlined below:
      • Weight: Patients used a wireless “smart scale” to weigh themselves; the scale automatically transmitted readings to the tablet-based application.
      • Sleep and activity: Patients wore a wireless activity and sleep monitor to track sleep (in hours) and activity time (by steps taken); the monitor transmitted the information automatically to the application.
    • Patient access to trend data: Patients accessed a second application on the tablet computer to view graphic presentations of their ODL trends over time. They could use this information to better understand the interactions of the various ODLs (e.g., medications and pain; sleep/activity/stress and pain; and activity/sleep and stress). They could also call, text, or e-mail their provider to discuss a concern, or bring the tablet computer to their appointment to supplement the patient narrative at that time, thus facilitating a conversation about trends in symptoms and behaviors or informing medication-related adjustments and decisions.

    Context of the Innovation

    Located in Berkeley, CA, the Healthy Communities Foundation is the nonprofit arm of the Healthy Communities Institute, an organization that develops and promotes information technology solutions that help public health departments, hospitals, and local coalitions improve community health through measurement, sharing of best practices, and identification of funding sources. The impetus for the Chronology.MD program came from an undergraduate student, Nikolai Kirienko, at the University of California, Berkeley with Crohn’s disease who faced challenges in tracking his health patterns. He approached the Healthy Communities Foundation; University of California, Berkeley School of Public Health; and the University of California, San Francisco Center for Colitis and Crohn's Disease to develop a multidisciplinary team to apply for a grant from Project HealthDesign (a national program sponsored by the Robert Wood Johnson Foundation’s Pioneer Portfolio, which supports innovations in personal health technologies) to develop an application to allow Crohn’s patients to track ODLs more easily.

    Did It Work?

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    Results

    The program increased patient tracking of symptoms, behaviors, medications, and laboratory test results, which in turn facilitated a better understanding of the interactions between ODLs. It also stimulated positive changes in health-related behaviors and medication regimens, improved patient–provider communication, and generated high levels of patient satisfaction.
    • More tracking of symptoms and behaviors: The proportion of the 30 participating patients who tracked their symptoms and behaviors more than doubled, from 40 percent before using the system to 92 percent at the end of the 9-month pilot test. The vast majority (approximately 93 percent) of these patients used the system, and those who did not tended to be either too ill to enter data or felt quite healthy and hence did not have anything to report or wanted to "take a break” from their illness.
    • Better understanding of link between behaviors, symptoms, medications taken, and laboratory test results: Patients noted that the program helped them better understand associations between health-related behaviors, symptoms, medications taken, and laboratory test results. Specifically, patients noticed that when they exercised more and got more sleep, their stress level and pain decreased. For some patients, increased sleep and exercise allowed them to stretch out the time periods between taking opiate medications, thereby increasing their perceived quality of life. Many patients reported that they had never before realized that increased sleep and activity had such a significant, positive impact on energy and stress levels or on severity of abdominal pain.
    • Improvements in health-related behaviors, medication regimens: Patients reported improvements in their medication adherence and other health-related behaviors, including diet, sleep, and exercise. Patients and clinicians reported that the information on symptom trends led to adjustments in medication regimens.
    • Better provider–patient communication: Clinicians and patients felt the program improved the quality of their communications by better preparing patients for an office visit and providing a more complete description of their symptoms over time.
    • High satisfaction: Patients reported generally high levels of satisfaction with the program, as illustrated by the following paraphrased quote: "Can the study go longer? Because I am finding this very useful. I have used this data with other doctors outside of the study, and as a result of sharing this data, they have changed my medications. As a result, my quality of life has gone way up, my weight has gone from 112 to 119 lbs, and I am not vomiting daily. I am no longer on intravenous drugs, which nearly killed me last year. I am now managing my pain via acupuncture, diet, and yoga, and I feel so much better than I did on the hardcore drugs. Besides, my doctor just told me that my blood levels are the best that they have been in years."

    Evidence Rating (What is this?)

    Moderate: The evidence consists of pre- and post-implementation survey and interview comparisons of a convenience sample of 30 patients regarding the proportion who tracked symptoms of health-related behaviors, along with post-implementation survey and interview feedback on the program's impact on patient understanding of the link between behaviors, symptoms, medication regimens, and laboratory test results; the quality of provider–patient communication; and patient satisfaction.

    How They Did It

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    Planning and Development Process

    Selected steps included the following:
    • Obtaining initial grant funding: The aforementioned undergraduate student wrote the initial request for grant funding, which was approved.
    • Gathering patient and provider input: Using a participatory design with mixed methods, both patients and providers gave input that informed the design of the applications, including which ODLs were included; ODLs that were chosen were identified as being personally significant to patients and clinically significant to providers. Clinicians at the University of California, San Francisco identified six Crohn’s disease patients and six providers to provide input.
    • Designing and testing applications: An information technology consultant designed the applications after gathering input from clinicians, patients, health services researchers, and health informatics experts. Clinicians at the University of California, San Francisco identified 30 patients interested in testing the application. Each received a tablet computer preloaded with the applications, a smart scale, and a sleep and activity monitor. Patients received instructions on how to use the equipment and were told to track ODLs at their discretion for 9 months.
    • Obtaining feedback and refining applications: Program developers met periodically with users to get feedback on the system, using the information to refine the applications. Researchers from the University of California, Berkeley led a qualitative evaluation of this feedback.
    • Seeking funding for continued evaluation: The program developer is currently seeking funding to support a more formal evaluation of the program—ideally a randomized controlled trial.

    Resources Used and Skills Needed

    • Staffing: The program required no new hiring, as existing staff incorporated project development and related activities into their everyday responsibilities. As noted above, the project team contracted with a software designer to create the applications.
    • Costs: Data on program costs are unavailable. The primary financial outlay consisted of the software designer fee, equipment (approximately $600 per patient for a tablet computer, smart scale, and sleep/activity monitor), and reimbursement for a portion of time spent on the program by various staff of the Healthy Communities Foundation; University of California, San Francisco; and University of California, Berkeley.
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    Funding Sources

    Project HealthDesign
    Project HealthDesign, a national program sponsored by the Robert Wood Johnson Foundation’s Pioneer Portfolio, which supports innovations in personal health technologies, provided a grant of $480,000 to support program development and evaluation.end fs

    Tools and Other Resources

    More information about the wireless scale and sleep and activity trackers can be found on the vendors' Web sites (www.withings.com for the scale, and www.fitbit.com for the sleep and activity tracker).

    Adoption Considerations

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    Getting Started with This Innovation

    • Obtain input from multidisciplinary group: Elicit input on the applications and study design from a multidisciplinary group of stakeholders, including clinicians, patients, health services researchers, and health informatics experts. Patient input is particularly important to ensure that the indicators being tracked have relevance to them. Providers may have ideas on clinical indicators to include, but patients may value other, more subjective indicators (such as energy level and pain) more highly.
    • Include only willing, informed participants: Do not force patients who do not like to use computers to do so, and make sure that patients understand the responsibilities, obligations, and opportunities associated with participating.

    Sustaining This Innovation

    • Pilot test with small group; then expand: Implement the program with a small group and then expand to a larger population over time. The initial test should gauge how easy the application is for patients and clinicians to use.
    • Refine application over time, based on feedback: Elicit periodic feedback on the application and refine it accordingly. The goal should be to produce something that is highly interactive, which helps to motivate behavior change.
    • Secure ongoing funding: Find an ongoing source of funding to cover the significant equipment costs associated with the program.

    More Information

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    Contact the Innovator

    Kathleen R. Morrison, MPH, PhD Candidate (on leave)
    Chronology.MD Project Director
    Healthy Communities Foundation, Senior Research Scientist
    2054 University Avenue, Suite 300
    Berkeley, CA 94704
    (415) 806-9724
    E-mail: kathleen@healthycities.org

    Innovator Disclosures

    Ms. Morrison reported having no financial interests or business/professional affiliations relevant to the work described in the profile, other than the funders listed in the Funding Sources section.

    References/Related Articles

    Project HealthDesign. Chronology.MD. Available at: http://www.projecthealthdesign.org/projects/round-2-projects/chronologymd.

    Morrison K. Patient utilization of ODLs and insights related to ODLs in Chronology.MD. Blog post. 2012 May 29. Available at: http://projecthealthdesign.typepad.com/project_health_design/2012/05
    /patient-utilization-of-odls-and-insights-related-to-odls-in-chronologymd.html
    .

    Footnotes

    1 National Digestive Diseases Information Clearinghouse. NIH Publication No. 12–3410. 2011 Dec. Available at: http://digestive.niddk.nih.gov/ddiseases/pubs/crohns/#what.
    2 Project HealthDesign. Chronology.MD. Available at: http://www.projecthealthdesign.org/projects/round-2-projects/chronologymd.
    Comment on this Innovation

    Disclaimer: The inclusion of an innovation in the Innovations Exchange does not constitute or imply an endorsement by the U.S. Department of Health and Human Services, the Agency for Healthcare Research and Quality, or Westat of the innovation or of the submitter or developer of the innovation. Read more.

    Original publication: April 24, 2013.
    Original publication indicates the date the profile was first posted to the Innovations Exchange.

    Last updated: May 07, 2014.
    Last updated indicates the date the most recent changes to the profile were posted to the Innovations Exchange.

    Date verified by innovator: April 01, 2014.
    Date verified by innovator indicates the most recent date the innovator provided feedback during the annual review process. The innovator is invited to review, update, and verify the profile annually.