Early in the recovery movement, there was a saying that what people with serious mental illness wanted was “a home, a job and a date on Saturday night.” I sure hope that’s not all they want. Worse, I think it misses the point. What people want is to be able to live their lives under their own terms. We’re all going to have more control, and therefore more power, over our own healthcare. But, as Spiderman was warned, “With great power comes great responsibility.” So too it is with our own healthcare.
The tradeoff for autonomy is responsible decision making. All forms of sickness carry varying levels of denial with them. People with other chronic diseases like hypertension, diabetes and asthma can and do make bad decisions about their health. But what happens if the organ responsible for decision making is impaired, as is the case in behavioral health? Then it’s the responsibility of that person to make appropriate preparations ahead of time. For that reason, I’d like to see psychiatric advanced directives used and recognized more by attending providers. Families can help with this, but it’s really the provider community that has to come to grips with the myriad of changes coming their way.
Personally, I believe the NBT (Next Big Thing) will be Personal Health Records (PHR) that will comprehensively summarize our health care and is available on demand to both the patient and the provider. Unfortunately, despite a number of attempts, PHRs are still not quite ready for prime time. When they are ready, information will be available to us virtually, wherever we are.
I was fortunate to attend TEDMED 2011 last year and heard a wonderful presentation by Tom Goetz, Executive Editor of Wired Magazine. Check it out at
http://www.tedmed.com/videos. His presentation was titled It's Time To Redesign Medical Data. It’s worth watching. He challenges us to think present, in this case, lab data, in a way that makes it more actionable to the folks who can do something about it – consumers. He suggested that there are four questions everyone one of us should ask when we are seeing a healthcare provider:
- Can I have my results?
- What does this mean?
- What are my options?
- What next?
That last question, “What Next” is really the big question for us all. Though we know a lot about the changes coming, a lot is still up in the air. Also, it’s unknown how these changes will affect us. I am a firm believer that we’re smarter together than any one of us is individually. That is part of the reason the
EveryDayMatters website was created - to communicate about what’s working, what’s not and what ideas you have, especially the ones that others think are “off the wall”. Think of this as an informal learning community for people who are passionate, creative and committed to those we serve.
What are you doing to change the way healthcare is delivered? How do we finally rid society of the terrible stigma around mental illness and addiction? You may not have answers but you sure have ideas and examples of things that have worked. Let’s hear them. With all the changes heading our way, we really do need to know…
…What next?