No other group was involved. No voice of patients, carers, HCPs or let me say it very simple: citizens weren't heard or involved in that decision. No one asked if the decision works for them.
Again one of the things I call a "Silo decision". Some people made a decision and the rest of the people have to live with it. It was not asked if this decision is feasible for them and their lives. They have to live with it.
Of course, some decisions must be made by a small group of people, they are the experts and the representatives of a country or an expert group. It is their job. I understand it.
But in my opinion they have to listen and do understand the people they make the decision for. To make things trustworthy, clear, transparent and understandable. Or short: useful. Worth to use it. To give it a try.
Especially in the area of digital health I can see a lot of silos. We still discuss but mostly there is not the public debate or discussion we would need to create a digital health system what is used by people. Because they see the benefits and are open minded.
There are Experts, Data Safety People, Patients, People, Citizens, HCP's and some more. This silos still exist although we know that digital health and health data sharing will not work without the peoples' willingness to learn more about those most important themes. It will not work with the trust of the people.
And trust is the other thing we still discuss. The big question: How can we grow trust in digital health and health data sharing is one of the questions I heard so often during the last years.
My answer is easy: Explain it. Don't do things in your silo and keep information in that silo. Share it. Exchange information with the other stakeholders, come together and have a discussion.
And then after a discussion, make a decision worth to be respected and easy to accept for the most of the people. I am sure, that you can't convince all, but most people of one group if the people are informed or let me say: educated.
More and more People are interested in digital health. And they have and want to know what happens in digital health and what will happen in the digital future. It is important, they have to live with all the solutions, their electronic health record and artificial intelligence. They are the so called "end-user".
As a patient myself I have to deal with the digital solutions. And mostly I am not asked if I want to have it or if I have an opinion about it or advice how to create or develop a solution. And to be frank, I would like to have that voice I want to sit at the table discussing the things. And I am not alone.
Unfortunately a lot of the discussions happen within the silos. And nothing is communicated to others.
Sometimes others are invited to give insights, but a wider discussion is not always happening although it is necessary to hear all the voices and include them.
That happens when a person becomes a patient and need digital health!
Especially when a person becomes a patient, the things are more difficult. There are decisions to make, not just for a medication these are decisions for your life. So you have to take a look on digital health too. Does it work, would it help me to simplify my life or help me to manage my disease better to have a better quality of life? Lots of questions to answer and the answer can be given with understandable information.
Patients have to know more about digital health and health data sharing and its importance.
There is a gap in the whole thing and we have to start now to bridge it. To grow knowledge, trust and help people to make the best decisions they can make. And to help the people who create digital health and health data sharing projects and find the most valuable frameworks for it to make good decisions too. And to share the information about it of course.
If we want to bring people to accept and use digital health solutions and share their health data, we have to come together and have a discussion. We have to meet the others to build the bridges to bring people on board. This thing is about understanding the other side and to find common solutions to make sure, that people are open to use new digital tools.
Sitting in our silos doesn't help.
It is important to do next steps and the following are my ideas for this:
- provide and share valuable and understandable and easy accessible information
- help to educate and empower
- we have to know the perspective of the other people and understand it - involve Patients!
- come together and have a common discussion to find common solutions
- regular communication, not only about privacy, it should talk about projects, benefits, next steps and the progress
We need the discussion and the public debate. Citizens have to be informed, because they pay for it with their taxes. I agree, that to do the first step is a challenge for us all. But I am ready to take it.
Or: Break down the silos! (We hear that call for a long time now right?) :-)
Because it's worth to have that discussion, to exchange information and start to create a common understanding.
What do you think?
Birgit
Text: Birgit Bauer / Manufaktur für Antworten UG
Photos: Pixabay.com
