I have lost both my mother and father to multiple forms of cancer. It was always there, all the time, just around the corner. Whenever there was good news, not long after, there was bad news. My parents underwent their diseases, it kind of “happened to them”, they did what was needed. Did basically what the “docs” told them to and, had really no idea of what other options were available; if any.
Looking back : stunning !
One of the great gifts I have received in my life, was meeting Maarten Lens-FitzGerald (@dutchcowboy on twitter). Maarten is a young internet entrepreneur, so he knows about the internet and its possibilities. Maarten got cancer too.
Almost right after been diagnosed he started to talk about it through social media like twitter ad made a blog : MaartensJourney.com “To share, to inform and hopefully to help a little”. Social media and the internet was his lifeline before, during and after chemotherapy, diagnostics etc. To talk, to ask, to find information and to get cheered up on though moments.
Through twitter we “met”. At first online, later off-line too. Discussing how this way of handling his disease maybe could improve healthcare, by telling his story. Not only online but also offline. How it could help my ambition to change healthcare bit by bit into a more patient-orientated healthcare. Something Maarten would liked to encourage.
For me, the roadmap Maarten had taken, illustrated that empowerment patients can realy help, once presented with accurate information in a understandable way, on a 24/7 basis, supported by social media.
We discussed the option of Maarten coming to Nijmegen and tell his story to my colleagues (at Radboud University Nijmegen Medical Centre) and others working in Healthcare. Since in my opinion many healthcare workers are not aware of these kind of changes, especially the aspect triggered by the internet.
So, at my first Health 2.0 conference March 2009, Maarten Keynoted (in Dutch) . But this time not –as he often does about his projects or business- but about his Cancer and the things he had encountered. See the interview that @berci made at the speakersdiner)
More than 100 Health Care professionals listened, in complete silence to what he had to tell to us.
For us it has marked the start of our Journey into participatory healthcare. I think we can say -as a result- we are one of the most active (academic) Hospital in the Netherlands and may be Europe on this frontier, if not thé most active one.
I just wanted to enhance this example (of many at present) to illustrate how Social Media can invoke healthcare improvement.
Internet is changing Health Care. Sometimes engaging, sometimes disrupting, dynamically but with a vast heading towards more participation of the people who healthcare is about : patients, their family and informal care.
As I wrote recently on my posterous-blog the most important factor to change healthcare costs literally nothing : Compassion.
It is heart-to-heart attention as one of my colleagues lately stated. It is trying to understand what puzzles or is needed by the other (patient) and how to help him or her. Com-passion : it is both and separate a very important aspect of healthcare. Without passion, no great things have happened. Historie show passion and drive made the difference, not money, not legislation. Com-passion is NOT facing patients with a paternalistic kind of feeling nor feeling sorry for them.
That’s why my goal will be to create, stimulate, enhance and strengthen Participatory Healthcare with educating and stimulating Compassion in our own Academic Hospital, in- and outside of it.
Also we will have to face the fact that not only the next generation will be handling information in a different way, but also now the internet makes finding information on one hand easy but on the other hand tricky, so we have to find a way to “certify” health information on a large scale, for instance with the HON-code.
Social media will play a very important role in the next decade, it is my hope or better my dream that healthcare professionals start to use it on a large scale. “To share, to inform and hopefully to help a little” since global sharing of initiatives, experiences makes improving Healthcare as global as healthcare is.
We in Nijmegen not only want to talk about sharing improvement but also put in our effort in doing it. Besides acting on the Participatory Healthcare frontier we also want to share our journey.
So last March we’ve had our 3rd Reshape conference. November 29 and 30 we will host our 4th, which will be the First European Medicine 2.0 conference of Gunter Eysenbach from Toronto. We will host this conference together with the University of Twente and the RIVM in Maastricht.
It is Thé Scientifical World Congress on Social Networking and Web 2.0 Applications in Medicine, Health, Health Care, and Biomedical Research from a academic perspective.
Next on April 4th, 2011 Radboud University Nijmegen Medical Centre will be the curator of TEDxMaastricht on the topic “Fueling the next revolution in Medicine & Health”, a top-level inspiration in Maastricht the place Europe was born, with the most inspiring speakers on healthcare from out of Europe. (@tedxmaastricht )
So, we are sharing our inspiration, our experiences questions (many many questions) and our passion with you, please come share yours with us.
Fransis said : “Start with the essentials. Then do the possible.
And then suddenly … you are doing the impossible.”