1. Project HealthDesign Overview Patricia Flatley Brennan, RN, PhD, FAAN University of Wisconsin-Madison Funded by the Robert Wood Johnson Foundation with additional support from California Healthcare Foundation

2. Design the ‘next generation’ of PHRs Move perceptions of PHRs from static repositories of information to dynamic, interactive applications that are a seamless and integral part of daily life

3. We needed to move from this…

4. To this!

5. Colorado Tablet Video

6. How we did it: Project HealthDesign $10 million national program Funded by the Robert Wood Johnson Foundation, with additional support from the California HealthCare Foundation Administered by a national program office at the University of Wisconsin-Madison School of Nursing

7. How we did it: Project HealthDesign Nine interdisciplinary teams working collaboratively over 18 months Design user-centered PHR applications Operate on a common technology platform Explore ethical, legal and social issues

8. What we learned: Collecting ‘observations of daily living’ may be the most important feature of PHRs ODLs are information that is collected and reported by the patient sleep, diet, exercise, mood, adherence to medications important to health, but not collected in a clinical setting Grantee teams received important feedback on what kind of ODLs people want to share and how it affects how they feel

9. What we learned: People don’t live from clinical episode to clinical episode ~ they manage their health every day Frequent recording of ODLs empower patients to: create a more meaningful portrait of their health Understand and shape daily health decisions facilitate more productive conversations with clinicians

10. What we learned: A common technology platform for PHR applications accelerates development, interoperability and improves security Consultants from Sujansky & Associates identified technical requirements common to all projects and implemented them in a web environment The Common Platform demonstrates: a common technical platform can support a variety of personal health application tools “centralizing” common functions reduces implementation time and increases interoperability among personal health applications

11. Common Platform The common platform components (CPCs) are implemented as web services and exist for storing observations and medications, as well as for providing authentication, registry, and access-control functions

12. What we learned: Users’ ethical, legal, and social concerns about sharing PHR information are real, but surmountable A team from University of Miami Bioethics Program looked at the ethical, legal and social issues (ELSI) associated with the grantee projects Top three overarching ELSI concerns Control over access to information managing privacy rights shifting shared decision-making to the user

13. What the teams demonstrated: Effective PHRs are not about the record, they’re about the action they achieve: TRUE Research Foundation and the Diabetes Institute at Walter Reed Army Medical Center A diabetes self-management application that captures and analyzes data and communicates key information cell phones University of Colorado at Denver and Health Sciences Center A portable touch-screen computer for older patients or their caregivers to better manage their medications at home University of California, San Francisco An integrated calendar with details of breast cancer patients’ treatment and personal schedules to better understand their treatment and proactively coordinate their care

14. University of Massachusetts Medical School Video

15. What the teams demonstrated: Dynamic PHRs operate well beyond the PC The University of Rochester A computerized “conversational assistant” that provides patients with heart disease a “daily check-up” University of Washington A system that allows people with diabetes to record their blood glucose levels, blood pressure, food intake and exercise levels and quickly upload these readings wirelessly over a cell phone to their clinicians Vanderbilt University An application for children with cystic fibrosis and their caretakers to track medications, alert parents when doses have been taken, manage refills, and more. The prototype uses a cell phone which can be embedded in age-appropriate skins, such as teddy bears or purses

16. What the teams demonstrated: Recording observations from everyday life yields better health Stanford University A Personal Health Application (PHA) to help adolescents with chronic illnesses transition from pediatric to the adult care system assume greater responsibility for their health and health information Research Triangle Institute International and the Cooper Institute A Web tool to help sedentary adults become more physically activity based on personalized information about their physical activity level and lifestyle, generating a customized plan that increases activity University of Massachusetts Medical School An electronic diary that supports collection of self-reported pain and activity data on PDA which will provide patients and their providers with options for analyzing and displaying the data

17. www.projecthealthdesign.org Where you can find more information: