A discussion on the Society for Participatory Medicine’s list serve (http://participatorymedicine.org/) made me realize that I used to have white coat hypertension, but I don’t anymore. It might be that I am old enough that my doctors are about my age or younger, but I think it’s more of the kind of e-patient I became. I would have always called myself an e-patient because I always looked up my conditions and drugs on the Internet. But how engaged was I in reality?
In my first pregnancy, I thought I read everything that I could get my hands on: books, websites, etc. We used to say that “we did everything right”: had a physical before getting pregnant, ate well, started doing yoga, met my ob-gyn, took prenatal vitamins. I did not realize that I easily overlooked the warnings, and simply listened to the optimistic messages in pregnancy books and on websites that preeclampsia happens at the end of the pregnancy and that you just get a c-section and it’s all fine. Whenever a test or doctor report mentioned preeclampsia, I brushed the thought away because I was not at the end of the pregnancy! I never explicitly looked up details. I brushed off the doctor’s reports about “poor prognosis”.
After the end of my pregnancy, we learned all that we could about preeclampsia: we poured over the Internet, talked to others that had it, read the research, found the best doctors specializing in the disease. Again I would call myself an e-patient, and I knew so much more this time… But still, this was the time of my “white coat hypertension”. While some doctors encouraged my participation and made me feel at ease co-managing my pregnancy, other nurses and doctors tried to demonstrate that my charts were not necessary and that I was overly anxious over no problems. I wasn’t overly anxious about my pregnancy, but I was about my relationship with my doctors, and I realized that this caused communication issues that could lead to problems.
Finally, I now have no white coat hypertension, I found doctors that would listen to me, that I communicate with well. Again I’m calling myself an e-patient, but what a difference from my old self that just read whatever was convenient or my other self that wouldn’t complain or communicate to her doctors.
And I still think I have a fourth level of activation ahead of me: the one where my communication to my doctors is seamless, happens in and out with a simple email or electronic messaging, with online tracking tools, where my doctor would know how much I exercise, how much I weigh, what by blood pressure is, what my blood glucose is or any other measurements that are important for me… I could get encouragements outside the visits, I could ask for advice as I need it.
My physician colleagues at the Society for Participatory Medicine (http://e-patients.net/) will tell me that there are not enough doctors to do this kind of monitoring and communication, but I can still dream!
The mailman just delivered the book End Malaria. It’s beautiful and I will give it away at my talk at NJ/DV HIMSS conference in Atlantic City on September 22: We want you! Doctors 2.0 – A Physician-Patient Relationships through Blogs and Social Networking.
I discovered today that Doctors 2.0 is a trade mark – I did not realize that and I apologize for using the name. It is a European conference that is discussing social media in healthcare environments. It looks quite interesting!
Back to End Malaria – it’s a book published by Seth Godin’s The Domino Project. It contains articles from 62 business thinkers pushing you to rethink the way you work. All proceeds go to the non-profit Malaria no more. When we buy a book the non-profit will send two mosquito nets to Africa. The articles are written by well-known book writers and are really inspiring. They are not talking about malaria, but about doing good work, achieving goals, and being the best you can.
Why did I buy this book for you? Because I want to share my passion for stepping over the fear and the status quo and making a difference for the people that are important for doctors: the patients. Yes, writing blogs will take time and it will require some thinking. But ultimately it will help overcome the disease that plagues us: the lack of communication and relationships between doctors and patients. It’s not THE solution, it’s just a start to let us know more about our doctors and open up another channel of communication.
Seth Godin writes one of the most popular blogs. he made me appreciate that marketing can be honest, that openness is valuable. The blog posts are short, but he writes at least once a day and there’s a valuable idea each day. Give it a try! Seth’s Godin’s latest project is the Domino Project. He promotes the best business books, and they often come free on Kindle for the first month or so. Well worth following! After reading a few of these books for free, you too will want to pay for a book like End Malaria. It is well worth.
And BTW, if you care about patients and healthcare and coming to Atlantic City, you can spend the prior two days in Philadelphia and hear Seth Godin and other amazing speakers present at the ePatients 2011 conference!
E-Patient conference in Philadelphia on September 20-21
And then NJ DV HIMSS conference in Atlantic City on September 22-23
– … and my talk about blogging for physicians
If I had to create my dream week, it would look just like this! Really exciting week! I should come back with lots of positive energy and ready to get things done! I will try to blog and tweet as much as possible.