PHRs: Where are we now and where are we going? An interview with Patti Brennan

This month, as part of our Conversations with Pioneers, a series of interviews with Pioneer grantees, we talked with Patricia Flatley Brennan, R.N., Ph.D., the Director of Project HealthDesign, one of Pioneer's national programs. Patti and the nine Project HealthDesign grantee teams are getting ready for the National Forum on the Next Generation of Personal Health Records, an event that will showcase the work of the program and foster a dialogue about lessons learned from user-centered design and policy directions to support continued growth and innovation in the personal health record arena. 

New Frontiers in Personal Health Records: A Report-Out from Project HealthDesign and Forum on Next-Generation PHRs will take place on September 17, 2008 at the Westin Washington, D.C. Center City.  The event was highlighted on the blog last month and has reached capacity, but don’t worry, we will be webcasting the event at rwjf.org/pioneer. We’ll be sure to let you know when the webcast is available.

Can you give us a preview of what will happen at next week’s National Forum on Personal Health Records?
On September 17, we will be showcasing the work of Project HealthDesign and the program’s nine grantee teams. The showcase is designed to do three things. One, it will foster a dialogue with policy makers, patient association groups, consumer groups and academics about the new vision for personal health records (PHRs).  Two, it will be an opportunity to talk about and focus on the fact that PHRs are not just about PCs, but rather tools that can be used with cell-phone platforms, spoken interfaces, PDAs and television interfaces--all sorts of visionary and innovative kinds of interactions. Three, it will explore the future of PHRs and the policy implications for advancing this field.

The morning sessions will focus exclusively on what we’ve done in Project HealthDesign at the level of our nine grantee teams. The nine teams will share their work and talk about key themes that have emerged over the course of the project. The first set of presentations will shed light on the idea that PHRs are more about action than about data management. There will be a panel that focuses on potential types of interfaces for PHRs other than PCs. A third panel will discuss the shifting focus from the health data that healthcare providers believe are important to information that patients find useful in their everyday living. While clinicians might want to know about the dose of a medication the patient is taking, the patient might find it much more useful and important to know whether or not that medication can be taken at 5:00 in the evening or whether it has to be taken at a specific time interval throughout the day. It might be that a patient wants to tell you more about their mood and their attitude, than their weight. It might be more important for the patient to describe family dynamics during a meal, rather than what was on their plate. We would call these observations in daily living, and they have to do with the markers patients use to know how their day is going or whether their health is progressing according to plan. Patients construct health in very personal ways, and we want PHRs to serve as an effective tool in managing their own constructs of health.

Will there be an opportunity to see demonstrations of the grantees’ work?
Throughout the day, we will be hosting an expo that will give attendees the opportunity to talk to the grantees individually about their research and view their PHR prototypes. Some of our teams will have devices available for people to actually use and manipulate. Others will have storyboards to explain how their applications work, how they tested the applications and the response and input they got from patients. And all of the grantee teams will be sharing video depictions of patients using their PHR applications in the real world.

What do you personally hope will come out of this event?
I would like to see anyone who’s involved in setting federal policy, whether it’s through association-level work like AMIA, or CMS, leave with an idea that PHRs are more than data tools for patients. They’re action tools.

I want people to leave the event realizing that there is not a single PHR that we’re all going to adopt, but rather there are sets of tools that people need to manage health information and take action based on it, and that together this suite of tools has a very different look and feel than our vision of a record, a notebook, or a binder. Right now when people hear the term health record, they think about binders or file folders. And so it’s unfortunate, frankly, that the term personal health record got so much uptake so quickly, because people do not truly understand what it means or the real potential of PHRs. A PHR is not a binder full of facts about me, it’s a set of tools that I may take up or put down that help me live better, and those tools draw from lots and lots of binders around the world. That might include my medical record in a hospital, it might be the tracking that I have at home about my menstrual cycle or my moods on days that I exercise. In essence Project HealthDesign has been working to illustrate how you separate the data from the application. And so the first thing I’d like people to be able to do is to leave with the idea that the PHR is not a monolithic enormous binder that people store stuff in, but a platform for action.

I would also consider the event a success if at least one of our teams went away with a strategy for wide-scale deployment of their application. Some of our teams have discrete products. Other teams are building rule sets that would be embedded in products, and they’re demonstrating how those rule sets work by creating mashed-together applications, like using iGoogle gadgets. We’re going to be bringing in the speakers from three of the major public data repositories, Microsoft's HealthVault, GoogleHealth and Dossia, and we hope that they will leave with the idea that what they’re doing is not only serving as stewards for data, but also as platforms for people to build action-focused health tools upon.

Most importantly, I want people to come to the event with questions about how health data drives health action, and how technology can drive health action. There is no one definition for personal health records, and if people come looking for that single vision, they may be disappointed. PHRs are about plurality.

Check back on Monday for more of our conversation with Patti Brennan. And for more information on the event, please visit the Project HealthDesign Web site.

About Patricia Flatley Brennan, R.N., Ph.D.
Patricia Flatley Brennan, R.N., Ph.D. is the Lillian L. Moehlman Bascom Professor, School of Nursing and College of Engineering, University of Wisconsin-Madison. Dr. Brennan received a Masters of Science in Nursing from the University of Pennsylvania and a Ph.D. in Industrial Engineering from the University of Wisconsin-Madison. Following seven years of clinical practice in critical care nursing and psychiatric nursing, Dr. Brennan held several academic positions. She developed the ComputerLink, an electronic network designed to reduce isolation and improve self-care among home care patients. Dr. Brennan currently directs HeartCare, a WWW-based tailored information and communication service that helps home-dwelling cardiac patients recover faster, and with fewer symptoms. Currently she focuses on the policy change and organizational re-design necessary to insure full value of community health informatics innovations. While president of the American Medical Informatics Association (2000-2002) she oversaw the development of the association’s strategic plan. Dr. Brennan serves on the leadership team of the NSF-funded Women in Science and Engineering Leadership Initiative at the University of Wisconsin-Madison. Dr. Brennan is fellow of the American Academy of Nursing (1991), a fellow of the American College of Medical Informatics (1993) and an elected member of the Institute of Medicine (2002).

Comments

[A. Scott Holmes]

Given Dr. Brennan's superb background, I am surprised she did not highlight the fact that PHRs, to be effective, must "Fit" into a complex environment that includes how to get data into and out of PHRs, HIPAA issues, how they relate to EHRs, will hospitals agree to connect to networks that include PHRs and EMRs (some will not as they fear they will lose patients to competitors), and if things work out, payers will save a lot of money and providers will lose money as the amount of patient care used will begin to decrease.

This is not intended todiminish the value of PHRs, but to put them in the context of the real world of healthcare.