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.
Technology is playing an increasinglyimportant
role in helping us manage andimprove our health. National initiatives have promptedpeople to think more about how they relate to their own healthcare—and the health care system—than ever before. People areincreasingly using technology—from mobile apps to online personalhealth diaries—to manage and track their health. These devices canprovide clinicians a window into patients’ everyday life and health.
Enter Project HealthDesign, a nationalprogram
of the Robert Wood JohnsonFoundation’s Pioneer Portfolio, whichsupports bold ideas that have thepotential to transform health andhealth care. Project HealthDesign’s research teamshave created personal health applications to help peoplebetter manage their health. In the process, they uncovered anew concept: observations of daily living. Observations ofdaily living, or ODLs, are patient-recorded feelings, thoughts,behaviors and environmental factors that are personallymeaningful 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 painexperienced, sleeping patterns, etc.
Two goals for the current
Project HealthDesign teams have been toexplore how to collect, store and use ODL data and to better understandhow clinicians can use ODL data. The program’s ﬁve current teams are working with patients andclinicians to develop and test personal health applications that capture and share ODL data. We know that patientsﬁnd this information meaningful to their health, and a few pioneering clinicians are beginning to use this informationto 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 andtechnologies—including mobile devices and sensors—to explore how ODL datacan 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 ODLsProject routine tasks such as of exercise, mood, ODLs such as use disease, including data related to both theOverview 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 healthDevicesGiven to Smartphone iPad Household sensors Smartphone iPod TouchPatients University of California RTI International, at Berkeley, HealthyPartner 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 eagerto try technologies that help them take chargeof their health. Because symptoms can ﬂuctuate hourly, Crohn’sdisease 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 newtechnologies and approaches that might limit their symptoms or improve thequality of their lives. Project HealthDesign’s Crohnology.MD team developeda mobile application that helps Crohn’s patients track pain levels, alongwith other ODLs and symptoms. They also developed a mobile applicationthat allows clinicians to view summary level or detailed reports of ODL datacollected by patients. The combination enables patients to accurately recordtheir day-to-day ODLs and symptoms—which helps them communicate withclinicians more efﬁciently, completely and concisely—and gives clinicians amore 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” theyParticipants 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 additionalinsights from their daily lives.
Early Insight: New clinical work
ows are needed in order to incorporate ODLsinto clinical practice. Although Project HealthDesign researchers initially viewed physicians as the keys toincorporating ODL data into the clinical workﬂow, nurses, health coaches and other caregivers have emerged as the key points ofcontact 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 foradditional review or follow up with the patient directly. The Estrellita team is taking a similar approach by employing nurse casemanagers to routinely check ODL data about the premature infants and caregivers who are participating in the study.
A weekly status report from
a participant in the dwellSense project.Early Insight: Reviewing ODL data can highlight day-to-day variation for patientsand 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 areperformed as expected or when steps are skipped. When reviewed by the elders, patterns in the data may alert them to a need forfollow-up action. Similarly, teens in the iN Touch study are able to review ODL data about their recent food choices, moods andsocialization in order to set goals both in cooperation with their health coaches and independently.
Challenge: It’s not yet clear
what the best approaches willbe for storing ODL data. Storing, managing and communicating ODL data taxescurrent approaches to electronic health records (EHRs). Project HealthDesign teams haveencountered existing systems that lack sufﬁcient ﬂexibility to handle highly personalized ODLdata. Creative thinking is needed to help address the many policy, technical and standardsissues involved in incorporating patient-sourced data into EHRs and clinical data workﬂows.
Challenge: Privacy and security issues
continue to be challenging andevolving. The current Project HealthDesign teams have taken several different effective approaches to protectpatients’ ODL data and other personal health information. Interestingly, patients participating in several of theprojects seem less concerned about protecting their health data; in some cases they have even removed privacysafeguards such as mobile device passwords.
What’s Next? As part of
Project HealthDesign, we hope to make animpact on how chronic conditions are understood and collaborativelymanaged. As our research teams delve further into their projects, we believe we can develop importantinsights into how to obtain and use patient ODLs that will empower patients and providers to take action thatwill 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.