Parkinson's Movement

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!


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

7 Replies

This video makes excellent viewing. Really fascinating. In my view, we can influence and instigate change by bringing voices together into one cohesive voice. Help us do this via Parkinson's Movement.


Hi Sara,

I'm waiting for you at the barricades!


On my way Hikoi! :-)


...they knew it, all along, and we didn't....

this statement says is all, why participatory medicine is the way to go.

We do not know everything, sure we don't, but we know what they can't know, because we are living it. Participatory is the way to go.

Want a mad red-headed flag waver!

Thanks for this Sara!


Lindylanka, you mean "Want ANOTHER mad red-headed flag waver?"


Sara (redhead)


This was a wonderful video! I'm lucky to have a very supportive neurologist, but this kind of change would only improve things.



We have this up on our website in Ireland .This type of management of Parkinsons is so empowering for us ,we are not Parkinsons ,we are just managing it on a daily basis to get the best quality of life for ourselves, as we support the researchers in their quest for a cure .


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