E-Patient or not?

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!


Healthcare Social Media for Engaging Patients

My blog post written for the HIMSS blog:


The White Paper that a number of us wrote in the Social Media Taskgroup is a very comprehensive overview of Healthcare social Media:

Healthcare “Friending” Social Media:
What Is It, How Is It Used,
and What Should I Do?

Terminology – What is the polite way to call your physicians, PA, NP nurses?

What is the unconditional patient to do? How do I talk generically about physicians, physician assistants, nurse practitioners, nurses. Do I need to list them all to be nice and polite and not forget anyone (or did I already forget some?). Insurance companies call them “providers” – but that sounds so wrong, so conditional. In other circles, they are called clinicians. This is somewhat better, but still so “clinical”. Should I call them physicians and physician extenders. Sounds silly too.

I give up, I’ll just call them all doctors or nurses. I respect PAs, NPs and all the other flavors. But I can’t find a good word that is friendly enough and respectful enough to include them all. I’m open to suggestions!

Docs blogging for patients – someone already doing it!

Dr. Segal, at Live Wellthy is doing exactly what I am trying to encourage our doctors to do: blog for their patients. It works!



Last week I attended the E-Patients Connect 2011 conference and the DV-NJHIMSS conference. I got to notice the juxtaposition between the e-patients and the Health IT folks. And the message I came out with is our humanity. On a personal level we’re all the same: good and bad together, usually meaning well. We often discuss about the others as groups: the doctors, the patients, the HIT folks, and these groups seem to lose the humanity: “the doctors are always late”, “the e-patients are taking too much of our time”, “the doctors are the most resistant to change”, etc. I got to experience the humanity of Seth Godin and John Halamka, both my favorite morning blog read.

At the e-patients talk there were very few doctors and healthcare systems represented. So there was quite a bit of talk about them as a group. But then, the very next day, I got to meet them in person. And they were nice and friendly and ready to listen to others and ready to learn and having a lot to teach too. When you see them in person, one by one, they just lose all the group qualifications.

Seth was mentioning that one reason to keep a good receptionist in a physician’s office instead of replacing her with a voicemail robot is to keep the humanity in and attract the patient. He’s so right! In our favorite dentist’s office, the receptionist knows all about us. She’s nice and friendly and only adds more value to an excellent dentist.

I know that  blogs are technical and they put a barrier to face to face online communication, but when there is no time for personal connections, personalized blogs will bring the humanity of the doctor out and will help patients understand more about the person. We generally like the people we meet, not so much the groups.

Seth Godin, End Malaria and Blogs for Docs

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!

Exciting week ahead – two healthcare conferences

E-Patient conference in Philadelphia on September 20-21

Seth Godin

ePatient Dave

Bryan Vartabedian

And then NJ DV HIMSS conference in Atlantic City on September 22-23

John Halamka

– … 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.

Twitter hacking – a case study

Interesting post about the NBC Twitter account being hacked. It’s worth reading as it describes Twitter’s and NBC’s response.

Our lessons:

– To prevent such attacks the best prevention is a good password: a good password is long (8 characters), has both upper and lower case letters, numbers and special signs. You also need to change it frequently. I am struggling as well with making up good passwords and remembering them all.

– Another action you can take is have a number of people monitor the Tweeter account to find out as fast as possible if an attack occurred

– If it happens, the first thing to do is to contact Twitter and ask to suspend the account

– Publish a statement on a related website – maybe your blog.  NBC’s statement can be used as an example:

The NBC News twitter account was hacked late this afternoon and as a result, false reports of a plane attack on ground zero were sent to @NBCNews followers. We are working with Twitter to correct the situation and sincerely apologize for the scare that could have been caused by such a reckless and irresponsible act.

Once the account is cleared and the passwords are restored, you should go back to the normal way of operation. It’s not that bad.

Such attacks are more common on popular sites, so the risk of hacking is not big and should not prevent anyone from using Twitter.

HHS HealthIT.gov website – very well done!

The HHSreleased a new website and it looks very good. It explains to healthcare professionals and patients why IT is important in healthcare. Really nice website.

If a hospital or physician’s office can find a developer and can find the time to put up a website that is so beautiful and well-thought through and can afford to keep up with updating it, I’d say go for it. But building a website like this is not going to be cheap or at least it will consume somebody’s time. I know because I am trying to build something similar for my company.

And it still uses a blog. We have to wait and see how often the blog will be updated and the quality of its information. I added it in my reader and if it will be worth reading, I will write about it.

If a hospital already have a marketing effort aimed toward social media, I would keep going with that and, at the same time, I would encourage physicians to blog to connect with their patients. It would just increase the number of communication channels that we broadcast from almost mass-media through a highly visible web site to the personal through enhanced communications between physicians and other healthcare providers and their patients.

Getting started with social media

Social media is everywhere. We can’t ignore it, we can’t give up. We need to start, in a small way probably.

I think I have a solution for physicians in outpatient settings: writing blogs for patients. Blogs are easy to use and inexpensive. The audience is reachable by the physician at appointments and it can trickle in bit by bit. The rules are easy: nothing exciting to start with: just stuff you could say in an elevator full of people, no patient complaints, no patient stories without explicit approval.

We don’t need to start running, walking is just fine, and a blog post once a week will not take that much time!

An example: Dr. Stewart Segal’s blog http://livewellthy.org/ He writes every day. He writes for his patients. He writes just a bit. He encourages his patients to live well. He encourages his patients to make an appointment when they don’t feel well.