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Project HealthDesign: Early Findings and Challenges

This report from Project HealthDesign details the themes and challenges the project’s five research teams have experienced as they’ve worked with patients to capture observations of daily living (ODLs) and integrate the resulting data into clinical care.

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Project HealthDesign:
Early Findings and Challenges
A national program of Robert Wood Johnson Foundation’s Pioneer Portfolio
Technology is playing an increasingly
important role in helping us manage and
improve our health. National initiatives have prompted
people to think more about how they relate to their own health

care—and the health care system—than ever before. People are

increasingly using technology—from mobile apps to online personal

health diaries—to manage and track their health. These devices can

provide clinicians a window into patients’ everyday life and health.
Enter Project HealthDesign, a national
program of the Robert Wood Johnson
Foundation’s Pioneer Portfolio, which
supports bold ideas that have the
potential to transform health and
health care. Project HealthDesign’s research teams
have created personal health applications to help people

better manage their health. In the process, they uncovered a

new concept: observations of daily living. Observations of

daily living, or ODLs, are patient-recorded feelings, thoughts,

behaviors and environmental factors that are personally

meaningful to people and give cues about their health.

ODLs can include information about an individual’s mood,

what they ate, how they felt after exercise, the levels of pain

experienced, sleeping patterns, etc.
Two goals for the current Project HealthDesign teams have been to
explore how to collect, store and use ODL data and to better understand
how clinicians can use ODL data. The program’s five current teams are working with patients and
clinicians to develop and test personal health applications that capture and share ODL data. We know that patients

find this information meaningful to their health, and a few pioneering clinicians are beginning to use this information

to inform clinical decision-making. We hope to discover how systematic use of ODL data could improve care.
Five grantee teams are working with a variety of patient populations and
technologies—including mobile devices and sensors—to explore how ODL data
can be ef ciently captured and then used in clinical practice.

Team Name      BreathEasy           Crohnology.MD                 dwellSense                Estrellita             iN Touch
                                                                                          Working with
               Working with                                                               high-risk infants
                                                                  Monitoring how                                 Monitoring ODLs
               patients who have    Tracking ODLs related                                 and their caregivers
                                                                  elders complete                                such as amount
               asthma to capture    to daily life with Crohn’s                            to collect ODLs
Project                                                           routine tasks such as                          of exercise, mood,
               ODLs such as use     disease, including data                               related to both the
Overview       of controller and    about mood, weight loss
                                                                  taking medications,
                                                                                          infants’ and the
                                                                                                                 food intake and
                                                                  talking on the phone                           socializing for
               rescue medications   and abdominal pain                                    caregivers’ day-to-
                                                                  and making coffee                              obese teenagers
               and symptom levels                                                         day physical and
                                                                                          emotional health

Devices
Given to       Smartphone           iPad                          Household sensors       Smartphone             iPod Touch

Patients
                                    University of California
               RTI International,
                                    at Berkeley, Healthy
Partner        Virginia                                           Carnegie Mellon         University of          San Francisco State
                                    Communities Foundation,
Institutions   Commonwealth
                                    University of California at
                                                                  University              California at Irvine   University
               University
                                    San Francisco
Early Insight: Chronically ill patients are eager
to try technologies that help them take charge
of their health. Because symptoms can fluctuate hourly, Crohn’s
disease is a complicated condition for both patients and clinicians to manage.

Clinicians rely on patients to self-report their symptoms during office visits,

but these accounts may provide an incomplete picture of the patient’s health.

However, Crohn’s patients tend to be highly motivated and willing to try new

technologies and approaches that might limit their symptoms or improve the

quality of their lives. Project HealthDesign’s Crohnology.MD team developed

a mobile application that helps Crohn’s patients track pain levels, along

with other ODLs and symptoms. They also developed a mobile application

that allows clinicians to view summary level or detailed reports of ODL data

collected by patients. The combination enables patients to accurately record

their day-to-day ODLs and symptoms—which helps them communicate with

clinicians more efficiently, completely and concisely—and gives clinicians a

more robust picture of the patient’s health, which results in better health care.
                                                                                    Crohnology.MD’s mobile application for patient
                                                                                    ODL data capture.

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Project HealthDesign: Early Findings and Challenges

  • 1. Project HealthDesign: Early Findings and Challenges A national program of Robert Wood Johnson Foundation’s Pioneer Portfolio
  • 2. Technology is playing an increasingly important role in helping us manage and improve our health. National initiatives have prompted people to think more about how they relate to their own health care—and the health care system—than ever before. People are increasingly using technology—from mobile apps to online personal health diaries—to manage and track their health. These devices can provide clinicians a window into patients’ everyday life and health.
  • 3. Enter Project HealthDesign, a national program of the Robert Wood Johnson Foundation’s Pioneer Portfolio, which supports bold ideas that have the potential to transform health and health care. Project HealthDesign’s research teams have created personal health applications to help people better manage their health. In the process, they uncovered a new concept: observations of daily living. Observations of daily living, or ODLs, are patient-recorded feelings, thoughts, behaviors and environmental factors that are personally meaningful to people and give cues about their health. ODLs can include information about an individual’s mood, what they ate, how they felt after exercise, the levels of pain experienced, sleeping patterns, etc.
  • 4. Two goals for the current Project HealthDesign teams have been to explore how to collect, store and use ODL data and to better understand how clinicians can use ODL data. The program’s five current teams are working with patients and clinicians to develop and test personal health applications that capture and share ODL data. We know that patients find this information meaningful to their health, and a few pioneering clinicians are beginning to use this information to inform clinical decision-making. We hope to discover how systematic use of ODL data could improve care.
  • 5. Five grantee teams are working with a variety of patient populations and technologies—including mobile devices and sensors—to explore how ODL data can be ef ciently captured and then used in clinical practice. Team Name BreathEasy Crohnology.MD dwellSense Estrellita iN Touch Working with Working with high-risk infants Monitoring how Monitoring ODLs patients who have Tracking ODLs related and their caregivers elders complete such as amount asthma to capture to daily life with Crohn’s to collect ODLs Project routine tasks such as of exercise, mood, ODLs such as use disease, including data related to both the Overview of controller and about mood, weight loss taking medications, infants’ and the food intake and talking on the phone socializing for rescue medications and abdominal pain caregivers’ day-to- and making coffee obese teenagers and symptom levels day physical and emotional health Devices Given to Smartphone iPad Household sensors Smartphone iPod Touch Patients University of California RTI International, at Berkeley, Healthy Partner Virginia Carnegie Mellon University of San Francisco State Communities Foundation, Institutions Commonwealth University of California at University California at Irvine University University San Francisco
  • 6. Early Insight: Chronically ill patients are eager to try technologies that help them take charge of their health. Because symptoms can fluctuate hourly, Crohn’s disease is a complicated condition for both patients and clinicians to manage. Clinicians rely on patients to self-report their symptoms during office visits, but these accounts may provide an incomplete picture of the patient’s health. However, Crohn’s patients tend to be highly motivated and willing to try new technologies and approaches that might limit their symptoms or improve the quality of their lives. Project HealthDesign’s Crohnology.MD team developed a mobile application that helps Crohn’s patients track pain levels, along with other ODLs and symptoms. They also developed a mobile application that allows clinicians to view summary level or detailed reports of ODL data collected by patients. The combination enables patients to accurately record their day-to-day ODLs and symptoms—which helps them communicate with clinicians more efficiently, completely and concisely—and gives clinicians a more robust picture of the patient’s health, which results in better health care. Crohnology.MD’s mobile application for patient ODL data capture.
  • 7. Early Insight: Each patient is different, so personal health applications need to be customizable. Mobile devices support customizable applications that allow patients, in collaboration with their clinicians, to select what data to record, as well as how it is displayed. Participants in Project HealthDesign’s iN Touch study were able to select extra modules to add to their application. The Crohnology.MD team took a different approach to customization: the user interface of their patient application allows participants to customize how their ODL data is displayed and save different views as “stories” they Participants in the iN Touch study track ODLs related to their moods, food intake, can later share with their clinicians. socialization patterns and exercise routines, but can also choose to track additional insights from their daily lives.
  • 8. Early Insight: New clinical work ows are needed in order to incorporate ODLs into clinical practice. Although Project HealthDesign researchers initially viewed physicians as the keys to incorporating ODL data into the clinical workflow, nurses, health coaches and other caregivers have emerged as the key points of contact for ODL data incorporation. ODL data from BreathEasy participants’ devices first passes through a nurse triage system, where nurses, who are guided by clinic-directed protocols, determine if patterns are normal, or if they need to flag the data for additional review or follow up with the patient directly. The Estrellita team is taking a similar approach by employing nurse case managers to routinely check ODL data about the premature infants and caregivers who are participating in the study.
  • 9. A weekly status report from a participant in the dwellSense project. Early Insight: Reviewing ODL data can highlight day-to-day variation for patients and clinicians. Sensors collect data about the daily activities performed by elderly participants in the dwellSense study. The sensors embedded in everyday devices such as pill boxes, phones and coffee makers generate data that reflect when tasks are performed as expected or when steps are skipped. When reviewed by the elders, patterns in the data may alert them to a need for follow-up action. Similarly, teens in the iN Touch study are able to review ODL data about their recent food choices, moods and socialization in order to set goals both in cooperation with their health coaches and independently.
  • 10. Challenge: It’s not yet clear what the best approaches will be for storing ODL data. Storing, managing and communicating ODL data taxes current approaches to electronic health records (EHRs). Project HealthDesign teams have encountered existing systems that lack sufficient flexibility to handle highly personalized ODL data. Creative thinking is needed to help address the many policy, technical and standards issues involved in incorporating patient-sourced data into EHRs and clinical data workflows.
  • 11. Challenge: Privacy and security issues continue to be challenging and evolving. The current Project HealthDesign teams have taken several different effective approaches to protect patients’ ODL data and other personal health information. Interestingly, patients participating in several of the projects seem less concerned about protecting their health data; in some cases they have even removed privacy safeguards such as mobile device passwords.
  • 12. What’s Next? As part of Project HealthDesign, we hope to make an impact on how chronic conditions are understood and collaboratively managed. As our research teams delve further into their projects, we believe we can develop important insights into how to obtain and use patient ODLs that will empower patients and providers to take action that will improve the management of health and coordination of care. To follow our progress and engage with us, visit projecthealthdesign.org or find us on Twitter @PrjHealthDesign.