By Natasha Münch, DiCE

Digestive Cancers Europe (DiCE) is a non-profit, European umbrella organisation of a large group of international members representing patients with digestive cancers - colorectal, gastric, oesophageal, liver, pancreatic, and rare cancers. Our mission is to contribute to early diagnosis and decreased mortality from digestive cancers, and to increase overall survival and quality of life. Our member organisations are vastly different; some are well-established teams with paid employees, some are run by groups of volunteers, and some are a one-man/woman show. Despite the disparity, all our organisations realise that health data is already all around us.

Understanding our members needs: digital health literacy

Through discussions and polling, DiCE identified a gap in our member’s level of understanding of the digital health space, including the potential benefit to citizens, patients, healthcare professionals, and healthcare systems. We believe education brings about empowerment, so with this in mind, and having recently participated in the Data Saves Lives Ambassador Training Bootcamp that focused on the topic of Artificial Intelligence (AI) in Lisbon, Portugal, I reached out to our partners at the European Patients Forum (EPF) to brainstorm ways we would support and improve the knowledge base of our close to 40 member organisations on the topic of digital health data.

Bringing #DataSavesLives into our annual Masterclass event

Working closely with Gözde Briggs from EPF’s Data Saves Lives, DiCE’s Masterclass seemed like the perfect place to start for us to start focusing our efforts on health data education. This annual, in-person event brings together key leaders from our member organisations from across Europe for 3 days of multifaceted and interactive workshops, informative scientific talks, and patient-focused discussion panels.

Beautiful and sunny Barcelona, Spain was this year’s Masterclass location, and on Day 2, following a delicious lunch of tapas, we kicked off our session entitled “A Brave New Digital World” with our audience of organisation leaders, patients, carers, and survivors, as well as industry partners. The intention of this session was to first introduce the key concepts of digital health data with Gözde’s guidance, and then reveal a digital health patient-focused app DiCE is co-creating with our patient community.

Utilizing the superbly developed Data Saves Lives Toolkit and supporting documents, Gözde enthusiastically introduced our diverse audience to the topics of digital health data and big data. Explaining that harnessing the power of health data helps propel holistic care, supports patients’ individual needs, improves testing and treatments, and overall outcomes. We explored how sharing of health data can benefit all sectors of the healthcare community, and ways for health advocates and patient support organisations to successfully communicate about health data.

With the help of the Data Saves Lives team and tools, we were able to break down complex ideas and explain them in ways that were easy to understand and relate to, while offering our audience the opportunity to openly discuss topics of importance to patient support organisations, such as trustability, liability, and the greater good.

Reflecting on the event and encouraging others to incorporate health data into their agendas

The digital health session was tremendously insightful for our attendees as it set up a strong knowledge base and the tone for the patient-focused app that followed. After learning the ins and outs of this app that DiCE is co-creating with its patient community, our audience felt empowered to have a dialogue about the benefits of such digital tools, while sharing their concerns, and ideas for ways we could tailor the app to meet the needs of the communities they represent.

Sharing the mission of Data Saves Lives was a valuable exercise for our DiCE Masterclass audience, we expect they left Barcelona with a new sense of confidence and understanding when it comes to health data! For anyone else considering how to incorporate the topics surrounding digital health and health data into their existing events – it is worthwhile and easier than you might think!