IDERHA hosts first Public Forum

On Monday 15 April, the day before the IDERHA Annual Consortium Meeting, the Fraunhofer Forum hosted over 100 people (60 onsite, 40 online) in the first of a series of annual IDERHA events aimed at the general public. This so-called Public Forum proved to be an ideal way to gather insights, opinions and concerns, and, as IDERHA co-lead Philip Gribbon put it, “it is a great way to see whether we’re still on the right track and get feedback on priorities for the coming year.” In return, IDERHA researchers were able to demonstrate their progress and plans for the coming years, and how this would ultimately benefit patients. 

A communication challenge

Prof. Dr. Torsten Blum began by reflecting on the importance of lung cancer screening as the model disease for IDERHA. He explained that the current complex diagnostic parameters in lung cancer can only be integrated into algorithms using platform technologies such as those IDERHA aims to develop. This was followed by Christian Muehlendyck, who introduced the IDERHA project to the audience. Sumit Madan, data scientist at Fraunhofer, concluded the introduction by explaining how artificial intelligence can help analyse patient data and how this fits into the overall goals of the project. 

After the break, the Public Forum continued, focusing more on the patient. Gözde Susuzlu-Briggs, Programme Manager Digital Health at the European Patients’ Forum (EPF), made a compelling case for why you should give access to their health data. She also noted that data science comes with its own communication challenges. “For many people the subject is actually a bit boring, very complex, and it is evolving at an extraordinary pace. That makes it a difficult topic to talk about.” Nevertheless, she stressed, it is too important not to do it. EPF is addressing this by involving the public in the development of toolkits and bootcamps, trying to find the best way to explain what it means to oversee one’s own health data and its applications for secondary use. 

A tiger in the wild

The upcoming European Health Data Space (EHDS) is a pan-European infrastructure for health data access and exchange. The implications for IDERHA and for individual patients were explained by Nadja Kartschmit, epidemiologist at the Medical University of Vienna. “The EHDS will benefit everyone: citizens, researchers, clinicians, regulators, policy makers and industry,” she stated. IDERHA will be aligned with the EHDS framework and in some ways will be a field test for the EHDS. 

Finally, Anne Funck-Hansen, Data Protection Officer at Fraunhofer, reflected on IDERHA’s legal framework for the use of patient health data, striking a balance between easy access and privacy. IDERHA has developed what she calls “an improved approach to a data sharing model where privacy, accessibility, trust and transparency go hand in hand”. “We believe that we have effectively set the stage for real compliance, despite the fact that we have an extremely complex data flow and architecture,” she said. 

Last topic of the Public Forum was a panel discussion led by Heather Colvin, Director Evidence and Outcomes Policy at Johnson and Johnson, on the need to develop novel policies to implement health technologies such as those developed by IDERHA. In the last part of the discussion the panelists exchanged their opinions about the increasing importance of real-world data and evidence compared to classical clinical trial data, and addressed how to deal with this from an HTA perspective. Heather used a metaphor to illustrate this. “A tiger in a zoo has 24/7 veterinary care, a perfectly balanced diet and an environment that has been built around its best self. What we’re really interested in is the tiger in the wild. This is the patient who has to get up early to take their children to childcare, who is late for work, who misses a doctor’s appointment and who occasionally eats fast food. That’s what we’re trying to do: reflect real life with real people with real evidence.” 

The human factor

In summary, this first Public Forum emphasized that the patient perspective is key in IDERHA, and that there is a need to share ideas and insights when it comes to access and reuse of health data. Several patient and clinical representatives attended the Public Forum, including members of the newly formed IDERHA Patient Advisory Board and Clinical Advisory Board. Their commitment and attendance were greatly appreciated and both Philip and Christian stressed how we’re looking forward to working together with them to make IDERHA a success in the next 4 years. 

Christian concluded: “IHI, our funder, is trying to drive innovation for the benefit of patients and society. What we have tried to do today is take you on a journey of how we as IDERHA interpret this. Not only from a technology perspective, but also from an implementation perspective. It’s about the human factor. Our technology can be as great as anything, however, the human factor will continue to play a critical role in determining the success of the project.”