Part 1 – A little background to get started
Since early 2007, and for the next couple of years, Afia is working with the Washtenaw Community Health Organization (WCHO) to develop a Personal Health Record (PHR) for their customers. This is a special challenge, but one that is very important to us. At Afia, we believe that consumer empowerment is one of the most important ways to fix our country’s healthcare problems. We are proud and honored to work with the WCHO on this project.
This entry is the first in a series that will document our experiences with building and rolling out the PHR – both good and bad. We hope that, by sharing our experiences, we will create a resource that will motivate and enable other health care providers to empower their own customers with their personal health information. The purpose of this article is simply to explain where we’ve been, provide some lessons learned to-date, and highlight some of the issues we expect to encounter in the future.
The stated goal of the PHR project was to help WCHO customers with Schizophrenia and Diabetes better manage their health. The Study on Morbidity and Mortality in Peoples with Mental Illness has more information on why this population is so important, not the least of which being that people with serious, persistent mental illness die, on average, 25 years younger than the general population.
At this point, we have a working system and are weeks away from starting a pilot with customers. The system works very well, and we expect people to really appreciate the unprecedented access to their own information. But, before we dive into where we’re going (in future articles), let’s back up and discuss where we have been. Over the past year and a half, we have interviewed over 40 customers and 20 staff to understand how they manage their health today. The system has been through 3 distinct iterations as we learned more and more about what information was important, and how to make it easy to use. Some of the lessons already learned:
- People with mental illness manage their health just like anyone else (okay, we should have known this). The lesson learned: A PHR for people with mental illness does not have to be custom built.
- Despite preconceived notions, lots of people with mental illness have access to, and frequently use, the Internet. Lack of access was one of the major barriers that people put up to stall the project. The lesson learned: Don’t let lack of access/ability to use computers be one of the reasons you don’t start a PHR project.
- While the urge was to disclaimer and describe everything for risk management, that made the system extremely hard for non-technical people to use. The lesson learned: Keep it simple.
As you can see, actually building the PHR…the technology itself…hasn’t even surfaced as an issue, and given today’s technology, we expect that pattern to continue. Some struggles we do expect to face as we move forward with the pilot:
- What do we do with erroneous information entered by customers?
- Does the PHR cause more work for clinicians? Less? No change?
- What does a help desk look like for a PHR?
- How do we make sure that, given the ease of access, people aren’t tricked or pressured into giving away their information to others?
So, we are off to start piloting. We’ll keep writing about our experiences to let you know how it goes on these issues and anything else that comes up along the way.