On Monday, 21st March 2022, Gilly and Bettina from MPNE attended the Conference on Civic Engagement in EU Missions. This was a high level event under the French Presidency of the EU council and took place at the French Economic, Social and Environmental Council in Paris. The replay of the event are now available here: https://missions22.eu/login
As the name of the event suggests, the topic was: how do citizens effectively take part in missions? Cancer patients are citizens with a particular concern- cancer. In the last decade, survival in Melanoma has considerably improved but not for everyone and not for all types of Melanoma, so research remains critical for our community. No surprise therefore that one of MPNE's particular interest is patient involvement in research with the aim to get better research faster.
We in MPNE have been involved in a number of research projects, most importantly projects funded under the Horizon 2020 program of the European Union- find out more here - but participated in many more grant applications, grant reviews, publications, trial protocols and teaching. What we have consistently noted that despite best intentions, truly involving patients in research is hard. It requires not only motivation but also time and opportunities to build trust and understanding between the different parties. We found it particularly frustrating that that usually took nearly till the end of the project- and have been wondering ever since whether there weren't ways to accelerate the process. And when we went looking, others had similar experiences!
Coming back to the Paris event....over the past months, an informal consortium of the
BMBF, the German Federal Ministry of Education and Research,
SIRIC-BRIO, the integrated cancer research site of Bordeaux in France,
and MPNE had developed a tool kit to facilitate the involvement of patients in cancer research. The idea behind the tool kit is that by applying Design Thinking one can turn loose exchange into a structured discussion that helps to get to solutions, like a research partnership.
The toolkit is one of the outcomes of increasing collaboration and exchange between partners in the field, greatly catalysed by BMBF’s activities on the principles for successful patient engagement in research under the German Decade against Cancer that includes a dedicated alliance to increase patient participation in research (German only). The principles were launched during the German EU presidency and carried forward by the following EU presidencies Slovenia and Portugal. The past trio urged in a formal letter the current trio of France, Czech Republic and Sweden to continue the work and Christine Chomienne, the vice-chair of the EU Cancer Mission board, stated the intention to do so during her talk at the event in Paris. We are obviously delighted!!
During the event, the consortium organised a workshop with the latest version of the toolkit that consists of an improved partnership canvas and a set of 12 newly developed ‘personas’ (2 research funders, 2 research institutions, 2 researchers, 6 different types of patients/ patient experts/ patient organisations), in addition to being present with a booth in the exhibition area. We hope that next EU presidencies will take up the topic of civic engagement in missions as it was great to see how other missions outside cancer engage citizens and to exchange ideas.
MPNE participants of Bootcamp21 in Berlin will have worked on an earlier version of the toolkit and the work will now continue, with a formal workbook planned and possible translations. The next iteration of the tool kit will be in collaboration with our UMCURE2020 colleagues from the Champalimaud foundation, if you are interested in joining us 13-15 May in Lisbon, details and how to apply can be found here.
We are also planning project-specific versions, like one that we will design specifically for our current Horizon2020 project, iToBoS.
The toolkit will be available under an Open Source ccbysa licence so that anyone who is interested can adapt and use it.
Looking forward to the next opportunity to work with some great colleagues on the topic!