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.

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.