In October 2022, we hosted our very first Data Saves Lives Ambassador Training Bootcamp in Prague, Czech Republic. The purpose was to equip regional and national level organisations with practical tools and tips on how to advocate for and have informed dialogue around health data sharing. This blog gives an insight into the hot topics that were discussed as well as a summary of the key insights.

Over the two days, the group explored a range of health data topics from basic terminology, governance and legislation to interactive workshops on individual health data challenges and questions - all with guidance from health data and communications experts. The training was then rounded off with a live tweet chat event demonstration, which examined how can we make health data more inclusive? - a perfect real-life example of how we can engage others in conversations about health data!

To set the scene on day one, our expert trainers Petra and Brendan took the group through their paces with a ‘Health Data 101’ – a whistle-stop tour of some of the key terminology that we would use across the two days, touching on hot topics such as European legislation, data ownership and rights, trust and data privacy. After laying down the foundations, we split into small groups to tackle some of the common challenging questions that are often asked to patient organisations. This was a fantastic opportunity to work through some of the complex dilemmas that come with communicating about health data. Some of the common questions included ‘how do you manage consent,’ ‘how can patient organisations build trust’ and ‘how do I ensure that only the right groups have access to my data? As a group, we agreed that transparency, a strong governance process and accountability are key to addressing such questions.

On the second day, we homed in on how data can save lives and how to make the topic more engaging. Our experts, Lars and Angela, took us through some examples of how they’ve brought various intersecting issues to life in their own work. We then turned our attention to the Data Saves Lives toolkit, which is a fantastic resource to equip patient groups and health influencers with the information and materials they need to have a positive dialogue with their communities about health data, and to potentially launch their own initiatives. Armed with fresh ideas and insights, we then workshopped some of our real-life challenges when it comes to health data. It was so valuable to learn from others who had overcome similar challenges, and also to be reminded that nobody is alone in navigating the world of health data!

We finished the Bootcamp by creating our own bespoke communication action plans, to identify existing opportunities to help us spread the word across our networks and plan for any new tactics to do over the next six months. It was so useful to think about how existing communication streams (such as newsletters) can be leveraged in this way.

For those who were able to stay on after the training, we did a live tweet chat demonstration to show how social media can be harnessed to generate engagement and interest in a health data topic. Tweet chats are conversations that occur on Twitter at a designated date and time about a certain topic – which in this case was on how we can make health data more inclusive. Lars and Angela answered some thought-provoking questions on the subject and our Bootcamp Ambassadors and members of the public got involved too, by adding their thoughts to the conversation and taking part in the live Twitter polling. This activity reached around 353.4K users across Twitter and had an overall impact of 13.4K impressions – highlighting the power of these simple activities. You can catch up on the full conversation by heading over to our Twitter page or by searching #DSLChat.

Our very first Data Saves Lives Ambassador Training Bootcamp was an inspiring two-day event, jam-packed with rich discussion, learning and most importantly fun! We came away feeling inspired by the 20 patient group ambassadors, from across Europe, who are dedicated to promoting and fully harnessing the power of health data in their own communities, to ultimately make a difference to patients. In 2023, we plan to be back with more events similar to this, as well as tweet chats and webinars, so stay tuned by following us on Twitter and Instagram.

Here are some of the key takeaway points from across the two days:

• You know your communities and have the power to influence the collection of health data, interpretation of health data and communication

• Make use of the Data Saves Lives toolkit and feel free to suggest more tools that you’d find useful – we are here to build capacity

• Don’t fear that you are not a health data expert (who is?) – ask for clarity and credentials if you’re unsure

• Share the good as well as the concerns to build trust in responsible health data sharing

• As we say in the PR world – good communication starts with a K.I.S.S – Keep It Simple, Stupid!