Project HealthDesign: Early Findings and ChallengesA 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 fi ve 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

fi nd 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

Project Overview

Working with

patients who have

asthma to capture

ODLs such as use

of controller and

rescue medications

and symptom levels

Tracking ODLs related

to daily life with Crohn’s

disease, including data

about mood, weight loss

and abdominal pain

Monitoring how

elders complete

routine tasks such as

taking medications,

talking on the phone

and making coffee

Working with

high-risk infants

and their caregivers

to collect ODLs

related to both the

infants’ and the

caregivers’ day-to-

day physical and

emotional health

Monitoring ODLs

such as amount

of exercise, mood,

food intake and

socializing for

obese teenagers

Devices Given to Patients

Smartphone iPad Household sensors Smartphone iPod Touch

Partner Institutions

RTI International,

Virginia

Commonwealth

University

University of California

at Berkeley, Healthy

Communities Foundation,

University of California at

San Francisco

Carnegie Mellon

University

University of

California at Irvine

San Francisco State

University

Early Insight: Chronically ill patients are eager to try technologies that help them take charge of their health. Because symptoms can fl uctuate 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 offi ce 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 effi ciently, 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.

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

can later share with their clinicians.Participants in the iN Touch study track ODLs related to their moods, food intake, socialization patterns and exercise routines, but can also choose to track additional insights from their daily lives.

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 workfl ow, nurses, health coaches and other caregivers have emerged as the key points of

contact for ODL data incorporation. ODL data from BreathEasy participants’ devices fi rst 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 fl ag 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.

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 refl ect 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.

A weekly status report from a participant in the dwellSense project.

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 suffi cient fl exibility 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 workfl ows.

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.

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 fi nd us on Twitter @PrjHealthDesign.