Sharing Data an utopia?
More then twenty years ago I often worked -besides my study – as a temp nurse at a top cancer clinic in Amsterdam. As I talked to some of the physicians I asked what made that some people ended up there and others went to either the AMC or the VU – both university hospitals with extended research and treatment programs on cancer patients.
The answer was pretty staggering: there was no ratio behind this. I was pretty shocked and asked: “But there must be some way you guys work together and share your results, your data your expertise and the way you focus on different subjects”. Again the answer was “no”! And “We are not sharing, we are competing!” was added as to give a good explanation on how things worked in science.
Ofcourse I was not totally ignorant on the field of competing with scientific publications, but the shear denial of the need for cooperation rather then competition in a small region as Amsterdam, let alone The Netherlands was rather shocking. This meant lots of money, effort and results were lost in ‘the battle’. I realize that competition also is an incentive, a drive for people to go farther then they’ve been before but this was pretty bitter not at least for the patients hoping for better treatments.
At TEDxMaastricht this year three presentations dealt with the subject of sharing data in medicin.
Paul Grundy – Smarter healthcare by smarter use of data
M.D., Director of Healthcare Transformation, IBM
Article in HuffPost
Stephen Friend – Break down the information walls
Founder of Sage Bionetworks
Marcel Joachimsthal – Healthy user data
VP & General Manager at GlaxoSmithKline
Two of the people advocating sharing data are from commercial companies i.e IBM and Glaxo. That’s interesting! They all focus on effectiveness, curation and sharing of data and focusing and involving on patients rather then processes.
Now what will this bring patients?
TEDx is about sharing ideas, and thrives on the feeling of togetherness where we all are one family (the human species) with some main goals we apparently share -or believe we share: quality of life, well being, peace etc.
Will the outcome of this TEDx be that we are closing in on any of these goals? Maybe! I hope so. There’s one factor that’s essential to all change nowadays. The abilaty to find and share data in a way we have never seen before: Via the World Wide Web and Social Media in particular.
Social Media is becoming our commonly shared conscience! The will and ability to share makes us vulnerable and last but not least accountable for our actions and presentations at TEDx-es!
And for Science?
There must be another incentive for scientists to share their data: The Nobel Price! In my humble opinion the Nobel Price committee should give the next price for “Medicine” – and maybe other disciplines as well- to the team of scientists that achieved a great result by sharing their data the most effective way.
Please take your time to watch these presentations.
In this Blog I focus on the data sharing subject. I was also very impressed by most of the other presentations with all their different angles and points of view! Check here to enjoy or get emotionally flabbergasted by them!
And many thanks to Lucien Engelen for taking a different perspective and standpoint years ago and seeing to it that “Medicin & Health” and the way we perceive it, deal with it has changed dramatically!