Between 10-11 October, the DataSavesLives initiative hosted its first Data Saves Lives Ambassador Training Bootcamp in Prague (Czech Republic). Aiming to equip patient organisations with practical tools and tips on how to engage in conversations around health data, the Training Bootcamp brought together over 20 representatives and advocates from a wide range of disease areas. DataSavesLives (DSL) is a European multi-stakeholder initiative which is working towards raising patient and public awareness about health data, with the goal of establishing a trusted environment for dialogue about responsible health data use and good practices. Over the two days of the DSL Training Bootcamp, the group learned about basic terminology, health data governance and legislation, and participated in guided workshops on health data challenges and questions.
The first day kicked off with a session on “Health Data 101”, laying down the foundations of knowledge about health data and covering topics such as data ownership, subject rights, trust and data protection. This session was delivered by Petra Wilson, a senior legal advisor on European health policy, and Brendan Barnes, Director of legal affairs and compliance at EFPIA. A facilitated breakout session saw participants working through challenging questions that can be asked of patient organisations and advocates regarding health data, such as how to manage consent, build trust, and ensure data privacy.
The second day of the Training Bootcamp was all about making health data topics engaging, to increase awareness and inclusivity. An initial session led by Lars Munter (Director of International Projects at the Danish Committee for Health Education) and Angela Bradshaw (Project Officer at Alzheimer Europe) provided some examples of how to communicate and engage audiences around health data topics, and showcased different ways that patient organisations and advocates can get involved in health data projects and initiatives. Next, participants worked with the Data Saves Lives toolkit, a resource co-developed with patient representatives that aims to equip patient groups 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.
The Training Bootcamp finished with a live Tweet Chat, expertly steered by Jess Pacey, CEO of the health communications agency, 67 Health. Lars and Angela answered some thought-provoking questions on the subject of health data, and the Bootcamp participants got involved too, by adding their thoughts to the conversation and taking part in the live Twitter polling. Read the DSL blogpost about the Bootcamp, here: