Leadership lessons and information exchange

Birgit Bauer, project coordinator at Data Saves Lives Germany, reflects on her experience as a Sciana Fellow, leadership, and her hopes for the future

Birgit Bauer is a social media, digital health, and patient expert. She specialises in communication in healthcare and has more than 17 years of experience. With her business partner, she works in the Manufaktur für Antworten UG. Birgit develops and realises communication programmess for partners like nonprofit organisations, start-ups, and governmental institutions. As a freelance journalist, Birgit has provided content for different formats like consumer magazines and economic newspapers and was nominated twice for the Ernst-Schneider-Preis, which honours journalists reporting on economics.

She has been an influential blogger about multiple sclerosis and healthcare in Europe since 2007. In 2016, she graduated from the EUPATI Patient Expert Training Programme and has continued to support different patient organisations voluntarily. In 2021, she became a HIMSSFuture50 Patient Leader.

Birgit is a member of the Data Saves Lives (DSL) initiative's editorial board and chair of the DSL Pilot Toolkit Group. She was also a member of the Stakeholder Group of the Tehdas Project, the Joint Venture Project to design the European Health Data Space and is involved in different advisory boards. She is also a co-author of different scientific whitepapers and publications and a member of Sciana’s fifth cohort.

Sciana spoke with Birgit during Cohort 5's third in-person residential meeting in November 2023. This interview has been edited for clarity and brevity.

Sciana Network: We're speaking at your third in-person residential meeting here. What comes to mind when you think about your experience in this programme?

Birgit Bauer: For me, it's sometimes a bit overwhelming, to be honest, because it's lots of knowledge and lots and lots of information exchange. And you need some days to digest. But it's very interesting and creative, and as we are going into our group works now more intensively, there is also, I would say, a more personal relationship [with] the other [Fellows]. So, the group comes together as a real group, and it's a team. So, you can go to everyone, and this is what I appreciate [as well as] the learnings I take.

I have a lot of takeaways already on my list today, what I will take over [into] my daily business life or also sometimes in my daily routine like reviewing and reflecting the day before, also be[ing] critical with the things you do and tak[ing] time for new ideas [...] it's not just about information exchange and being very visionary and creative, thinking about One Health and so on. Sometimes, you also have this exchange between the lines, and you have something else like new inspiration or an idea for your own projects [...] So I would say it's a very extraordinary experience what you can make here, but it's also a great learning guide.

SN: Part of the Network's mission is to help equip leaders for future challenges in health and wellbeing. Could you provide some examples of what you've learned about leadership while participating in this programme?

BB: Well, one challenge for me is to be patient. But I learned sometimes leadership also needs time, and when you work on something, you don't expect that it happens [straight away]. Now, sometimes it happens maybe 10 weeks later or so. On the other hand, I learned a lot about negotiations, and also it changed my thinking about leadership in general. Another very important learning for me was just to listen. Observing: I did this before already, but I do it more consciously now, and this helps also to find ways to solve problems or answer questions.

So, I had read a lot of books and had other courses where leadership was the theme. But here, it is more intensive, and you can learn more about that from all the others because everyone has a different strategy, and everyone has different thinking. And you can pick, I would say, the best of it and adapt it for yourself.

Just an example… I can see that when it comes now to negotiations in policymaking fields. Sometimes I g[e]t invitations to give advice or consultancy in that area and to know that the things I have learned at Sciana helps a lot to have better conversation[s] and give the right advice or idea in the right moment... I would say this year has changed things a bit, and sometimes I'm doing unexpected things because people think, "Okay, now she comes out with a lot of points." And sometimes I have made one point - made one strong point - and then let them think. And this is coming up now [in my work], and this is very helpful.

SN: Data Saves Lives Germany, which was funded by the Federal Ministry for Health, was recently recognised for its commitment to better research through the use of data. Could you tell us more about the initiative’s journey to date and where you see it going in the future?

BB: As I launched Data Saves Lives Germany, it was very clear [to] me it [would] be a challenge. Health data and the use of health data was not so known in patient communities, and also not in citizenship. There were, and there are, big gaps of knowledge and not really good literacy. So, we started from the ground and with the basic knowledge to explain, especially [to] patients and citizens, what health data sharing mean[s], and also to discuss the benefits. Additionally, we support patient organisations with their communication about it.

We are on our way and during the first year we tested a lot of things, [including] wording [and] formats. We did a big analysis what was published in our 2023 Data Saves Lives Germany Ship’s Log. We had a huge success in many areas. We gained the attention of patients and patient organisation and started an active discussion about health data sharing and grew a little but very good community. Our analysis was shared with the government, with experts and across different stakeholder areas not just in Germany [but] also across Europe. Also, the OECD was really excited about it.

[Looking to the] future, we [will] move forward to bring the theme more intensively to the people, we [will] continue to go to congresses and conferences, speak at panels, run workshops, and grow the community. As we are a not-for-profit organization, we [will] grow also our supporters’ network, so if people want to support the project and our work, the people are welcome. But the big goal is really to grow health, digital and data literacy to enable and empower patients and people to make informed decisions when it comes to health data sharing and digitalisation.

SN: Cohort Five's overall Sciana Challenge is building a connected and sustainable health ecosystem based on One Health principles and approaches. What does this challenge mean to you? And could you share more details about what your working group has been investigating?

BB: One Health was, in the beginning, a little bit overwhelming for me because it's a lot. It has an impact on everything [that] we have in our lives. Nature, human beings, health, whatever it is, it could be One Health. And so, you have to find [your] own definition first, and you have to understand the whole thing to make sure that you are going into, I would say, [in] a more or less right direction.

Our working group is working on health literacy […] You can see that people don't know a lot about it... So, we are all doing a lot in the direction of One Health, but we don't do it consciously. We do it unconscious[ly]. We do it because we are always doing it in that way. And I think we have to create more awareness, and that's [what] we are looking for at the moment on a higher level. It's also how governments can better communicate and how can we grow that literacy there [so] that they can give it down or provide more knowledge to the citizens also.

SN: By your fourth and final meeting, what are you hoping to have achieved from your time within the Sciana Network?

BB: To fulfil our challenge first. And I'm not sure, as we are working in progress... But we will stay together afterwards as we have strong connections already, and we have very often same interests. So, we will not leave that group, go our ways, and never meet again. We will come together as we are member[s] in this very special network, and you can notice that already. I guess there are relationships and connections, and we will use that also afterwards.

At the moment, I cannot specify what I am expecting from the fourth meeting because we are in that ongoing process. But I hope that we can finalise our project work. Personally, my takeaway already is you can do leadership and you can create the future. It is not just about learning something; it is also about learning about yourself and chang[ing] your mindset in different ways.