Saturday 28 May 2011

Health 2.0 - "The patient joins the team"

Being a student of Health Informatics at the Karolinska Institute has introduced me to a number of interesting concepts. Already during our very first week in August of last year, we heard about "patient-centered healthcare", "shared decision-making" and "patients as co-creators of health" and to a highly opinionated and severly inquisitive patient such as myself it is quite simply music to my ears. It was simply a match made in heaven and me and my student colleague with MS (yes, what were the odds of TWO highly opinionated and severly inquisitive brain disease victims actually ending up in the same class....) had a wonderful time asking our teachers to elaborate on the patient perspective to the point where I would guess our more normal classmates of medical and computer backgrounds from all over the world probably wanted to smack us to make us keep quiet.

However, the true "Eureka-moment" came when I first heard about "Health 2.0", which in the words of Lucien Engelen means "the new relationship between health care provider and patient" (from A little booklet about Health 2.0, 2010). I would guess that the definitions of Health 2.0 are at least as many as the number of people working in the field, however to me personally it signifies Patient Empowerment in its true meaning, giving patients wanting to take more responsibility for their own health a means to do so by in the optimal way using the Internet and social media. To me Health 2.0 is about a more equal sharing of responsibilities within healthcare by acknowledging the patients expertise and experiences of their illnesses and collaborating to give all stakeholders a better outcome. To me this is the only way to meet the increasing burden of illness in the world and I am certain the "revolution" is just starting. See you on the barricades!

(References: http://en.wikipedia.org/wiki/Health_2.0, http://lucienengelen.posterous.com/21389951)


This video is to me an excellent example of what my dream of future healtcare looks like:

Tuesday 17 May 2011

Being brave

Last year I did the the bravest thing I have done in my life. And to me being brave has very little to do with exposing yourself to all sorts of life-threatening activities such as parachuting or bungee-jumping or even riding a bicycle down a ski slope in Slovakia in the summer (one of my friends has actually done this...).  Well, I guess these things are also brave in some sense, but most of the time they just seem unnecessary... at least to me, but then again maybe it just comes with the territory of having a movement disorder.

To me courage has to do with following your heart even though you don't know what will be. I read a quote from some old Greek last year and it goes something like this (if you think the translation is a bit dodgy that might be because it has been translated from Greek to Swedish and then to English): "Where you talent and your passion meet the needs of the world, there lies your calling". I have found my calling. I am just about to finish my second semester at Karolinska Institute in Stockholm studying Health Informatics (HI). HI is simplified all use of information and communication technology within healthcare in the broad context and here lies my calling. I want to use HI to empower myself and fellow chronic disease patients by giving us tools for understanding our situation better, tools for more effective communication with our doctor and nurse and tools for education. Education of ourselves, education of healthcare professíonals, education of our near and dear as well as awareness for everybody.

In my point of view, this is the only way healthcare can meet the increasing number of chronically ill without having the cost spiralling totally out of control. The only way is to give patients the choice to contribute if they want to, to allow patients to take responsibility for their own health, for their own care.

I am not saying this will be easy, but that is not a reason for not trying... We will all have to be brave and then the sky will not even be the limit!

(by the way, if any of you would happen to know who was the originator for my (probably severely and brutally disconfigured) quote about callings, please just let me know, OK?)