Project HealthDesign: Rethinking the Power and Potential of Personal Health Records

Project HealthDesign is a $10 million national program of the Pioneer Portfolio. In the first round of funding, nine interdisciplinary project teams designed prototype personal health record (PHR) applications that tailored to the needs, preferences and daily habits of patients. Placing patients at the center of the design process led to some interesting findings, including the relevance of patient generated "observations of daily living" (ODLs) — data on factors such as sleep, diet, exercise, mood or adherence to medication regimens. In the second phase of the program, grantees seek to test whether and how to integrate patient expertise and ODL data into the clinical encounter with the ultimate goal of empowering patients to understand, influence and improve their health. Currently, Project HealthDesign grantee teams are designing and conducting small trials of PHR technologies can be used to inform clinical decisions with ODL data. Says Patti Brennan, the project director, "A lot of the emphasis in health care technology is still on the clinician and what's happening inside the hospital and the clinic. We're moving that discussion into the patient's household."

Program/Initiative

University of Wisconsin-Madison School of Nursing

600 Highland Avenue
Madison, WI, 53792-2455

608-263-5182
Website

Patricia Flatley Brennan
Program Director

608-263-5251
Email

Gail R. Casper
Deputy Director

608-263-5247
Email

Rethinking the Power and Potential of Personal Health Records

Project HealthDesign is a groundbreaking national program of RWJF, designed to spark innovation in personal health technology. The program advances a vision of personally recorded health information as springboards for action and improved health decision-making.
 
The most recent Project HealthDesign teams worked with patients and clinicians to examine how "observations of daily living," such as pain, mood, and energy levels can be captured and integrated into clinical care and daily health decision-making.
 
Project HealthDesign research will help technology developers, policy-makers, patients, and clinicians develop better ways to put patient needs at the center of the nation’s health information technology infrastructure.

Project HealthDesign
Project HealthDesign
Project HealthDesign
Project HealthDesign

Final Report: Building Bridges Between Patient Experience and Clinician Expertise

Project HealthDesign shares in its final report how patient-generated data, defined as “observations of daily living,” can be an important part of patient engagement, and a much-needed source of information for clinical care.

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From the iPhone to the EMR

Sparking Innovation in Personal Health Technology

Since 2006, Project HealthDesign has supported research teams that work alongside patients and clinicians to develop personal health applications that are useful to patients managing chronic diseases and have implications for clinical care.

In this video, research teams discuss how they have demonstrated the clear potential for improving health care delivery and outcomes – as well as patient engagement – through the use of personal technology.

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Research from Project HealthDesign

Lessons from Project HealthDesign

Lessons from Project HealthDesign

In their discussion of Project HealthDesign, the authors describe factors to consider in protecting patient-generated health information shared through mobile devices, and make recommendations for securing that information.

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Incorporating Patients Meaningfully

Incorporating Patients Meaningfully

Patient-generated data should be integrated into electronic health records to better inform clinical treatment and decision-making, according to Patricia Flatley Brennan, PhD, RN, national program director of Project HealthDesign. In testimony to the Federal Health IT Policy Committee’s Meaningful Use Workgroup, Brennan recommended that the government include criteria for incorporating patient-generated data into clinical workflow plans.

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Advancing the Vision of Consumer-Clinician-Computer Collaborations

Advancing the Vision of Consumer-Clinician-Computer Collaborations

This guest editorial introduces a supplement to the Journal of Biomedical Informatics. The supplement presents work from the initial round of Project HealthDesign. The articles discuss the following projects and topics: care plan and development, Quality of Life Timeline, next-generation data-entry modalities, data input and output using mobile technology for geriatric patients, children, adults with chronic illness, and adults with a desire to modify their health behaviors, and an overview of the ethical, legal, and social issues raised by personal health records.

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Rethinking the Power and Potential of Personal Health Records: Round One Final Report

Rethinking the Power and Potential of Personal Health Records: Round One Final Report

The work products and final report from the initial phase of Project HealthDesign, currently available for download, capture key learnings from the work of the program’s first nine grantee teams, as well as from its efforts to develop a common platform and explore the ethical, legal, and social issues tied to next-generation personal health records.

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Personal Health Data
Personal Health Data

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14

Number of teams made up of researchers, clinicians, and patients supported by @prjhealthdesign

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“At @prjhealthdesign we’ve labeled patient-defined #data as #ODLs” via @pattifbrennan

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