Brussels, 18-20/11/2022.
More than 33 participants gathered in Brussels on 18-20 November for the MPNE mini-Meet 2022, held under a new Over the Edge format.
With the pandemic coming to an end and upon requests from the community, the topic was horizon-scanning: how patients as a community can ensure that information about the latest treatment developments and other advances are well-disseminated within the patient community; what measures shall be undertaken for early detection of cancer and as a special topic, how the new European Health Data Space can provide benefits for patients.
With the upcoming European Health Data Space, EHDS, and the European Cancer Patient Digital Centre proposed by the EU Cancer Mission board, diverse stakeholders voice what they would like to see accomplished. Patients are thereby usually only mentioned as those who should agree for their data to be shared, without any convincing value proposition in return.
Further, MPNE’s role project partner in iToBoS (Intelligent Total Body Scanner for Early Detection of Melanoma) is to contribute the patients' point of view on the use of their data within the project and efforts are ongoing to formulate a concise position.
During the MPNEminiMeet, the MPNE community tested a novel concept, building on a sketch for a hypothetical app that Gilly Spurrier drafted for a presentation at the CDDF forum in Amsterdam in September 2023 to illustrate her expectations of what the European Health Data Space should deliver for patients. Following a design process for a hypothetical application dubbed Gillyweed* - in recognition of the author of the original idea, working through the weeds around data-use and the belief that the magic in a functional EHDS lies in providing true value to patients to enable data-sharing in the first place- as well as the invitation to focus on what could be if we once did not focus on barriers first. Building on Gilly’s first concept, also aptly described in this blog, we will work through the different needs that patients would like to see addressed with the help of their data, their concerns e.g. with regards to privacy, required control mechanisms and non-negotiables that could potentially undermine the success of the concept. At this moment in time, the intention is not to build an actual application. While the process will be real, the end product is hypothetical- and as such, free from real-world concerns, very much as the name suggests. Outcomes from the workshop have now been transferred to a miro board and are awaiting the next iteration, planned for early autumn 2023!
We hope that this process will capture the views and preferences of the MPNE community with regards to data use- a perspective that we will then contribute to the overall discussion as well as specifically in concrete projects such as iToBoS. To be followed-up!
Read more at: https://www.mpneurope.org/mpne2022.