Why you should care about electronic health records if you're an interactive media designer
I just came from a very lively conference hosted at USC, the 3rd Annual Body Computing Conference. I have been there since the beginning. The room is still mostly full of doctors and business people, but more and more designers and creative people are showing up. This year I was a panelist in a panel that was titled "Body Computing and New Businesses: Non-traditional Businesses and Approaches to Networked Medicine". The moderator, James Mault, director of Microsoft Health Solutions renamed it to "DISRUPTION". I have been disrupting this conference since it started and I am glad to say it has been appreciated.
The Body Computing Conference is a place where the future of health care and biomedical engineering is discussed. It is where skepticism meets disbelief and they all have martinis in the end discussing the consumer revolt. YOU, as the future designers of interactive experiences and also as consumers of the health care system should make an effort to understand what this means.
I will take at stab at the low hanging fruit here: electronic health records. Besides what may seem like a banal practicality, making these records electronic is more than just cost-saving and convenient. In fact, those of you playing with Wii sports or wearing a pedometer are already generating electronic health records. Microsoft and Google are helping digitize and decentralize your data. Pay attention. Data is not just silly numbers when it comes to health. Your electronic health record is more than a database or a pretty flowchart. It tells a story. It tells a part of the story of YOU in your life journey and you can share that with the people who care for you and vice versa. Your health record is no different than any other personal narrative. And if you are a designer, you make that data be anything you want.
When you go to the doctor for complex health problems, you have to take a big folder of records with you and try to tell your story to him or her through meaningless numbers that aren't connected. Who has time to manually chart data? Every blood test you ever had done and every time you have ever gone to the doctor, you have generated a narrative. You have told one, and the doctor has recorded one. This is part of the story of you. So what, you say?
When my grandfather was getting sick in the last two years of his life, my mother in Greece who helped managed his care but knew nothing about physiology would fax me his paper test results so I could tell her what they mean. When he passed away, I filed away all those faxes in a folder next to my tests. I didn't think much of it but now my mom's tests are piling up and soon my father's will be next to them. Aggregating your family's health data can one day save your life. This week my doctor asked if I had certain test results from all members of family in order to help diagnose a complex problem. "Uhm. I can get them all...eventually...on paper..." is what I said. Yikes! We're not there yet...
And here is the thing: we will all die at some point, but our data can potentially live forever. In fact, other than a few pictures, one video and my grandfather's medical test results, I no longer have anything else of him that seems tangible. Yet his health is tied to mine because these days, we are discovering exactly how much family history matters. The story of our family is encoded in our genes. Science is making the invisible visible, but this data is still meaningless until it becomes personal and you can correlate your entire family's genotype with your entire family's phenotype in some way that has meaning to you and your health care provider. And may I dare say that you can make this experience of collecting and sharing the data fun and productive? That is right. Just use your imagination.
Doctors keep telling us about findings and best practices and evidence-based medicine, but it means nothing to us and to them unless we can all adapt those findings to our family history. With electronic health records you can do that too even on your own. You can stage your own family intervention. You can create a spirit of competition and collaboration between the people you care about because survival is a primal instinct and people will band together if the data tells the right story to them. Electronic health records are the ultimate crowd-sourced experience: they have the gravitas needed for people to really give a damn.
Do not snub this opportunity to think about how every device you wear, carry or have embedded in you can connect with your electronic health records and vice versa in a meaningful way.
Ideas welcome.