Trust is key!!
Why, who and what are the terms Simon Sinek uses to outline how people make their choices to buy certain products or services.See his Ted-talk: https://www.ted.com/talks/simon_sinek_how_great_leaders_inspire_action
His ideas helped me to make my point about trust as the key for the acceptance of the Health Data Cooperation.
Because:
Why should people use a HDC?
What’s in it for them?
Why should people put their trust in a HDC?
Why should people share their health data?
Why should people trust the people from the HDC?
Why should people trust the technical infrastructure from the HDC?
These are all relevant questions in a world where there is increasing attention on the power of the big tech companies in relation to constitutional and civil rights. As shown recently in a Dutch newspaper, the NRC: https://www.nrc.nl/nieuws/2017/02/09/macht-techbedrijven-zet-grondrechten-onder-druk
When you think about the possible growth of the HDC, especially with an international perspective, you automatically see millions of participants and a very big data collection. What’s the difference then with Facebook for example? I believe the difference is not in the what but in the why.Technically, we all do the same. So, there is no difference.
The difference is not in the What, technically speaking, we all do about the same.
For a part the difference is in the Who, because people who commit to this movement have, I think, fundamentally different beliefs than people working in Big Tech.
The difference is mostly in the Why dimension from Sinek.
Why we do this, why we put our energy into it, that’s what makes people enthusiastic and makes them put their trust in it.
I believe in the power of small and local. At the same time, I believe in the potential power of big, of great. But a “great” which is also connected with me, where I have influence, and which secures my personal data and which I can trust.
When I look around, I see more and more people thinking alike. This is the “why” where people can unite, align, cooperate, and find each other in a new movement. The HDC can and will be the vehicle for this!
The HDC must be big (as in big tech), and in that sense, it means a lot for knowledge development and research. At the same time, the HDC must be small, as a local community where people can create the new social fabric, which is so needed these days. And the numbers you organize will advocate for the community. Numbers grant a voice to people or to individuals who normally would have none. The benefits created by the big dimension of the HDC can forge space at the local community level to work on restoring the social fabric.
My dream is to help create a new domain, the human domain. New, and replacing the current domains of cure, care, social, welfare, financial etc. Away with the brick walls, no financial hurdles, bureaucracy. Just do what’s needed.
In order for all the professionals to be able to focus on their real task, of helping people who need their help, service or attention.
The Health Data Cooperation can be the platform, the vehicle, for that development. It can be a way to bring back ownership to the people. It can be a way to bring people back to the relation between actions and consequences, for instance lifestyle in relation to health costs. Now that relation is completely lost. We all know examples of that behavior, “I have a right” “You must help me” and so on. It puts a lot of pressure on relations between people, and between people and public organizations. I strongly believe that creating the HDC as a community will be the vehicle to a better and more social society. And that will be to the benefit of us all.