3rd HTx Expert Forum – 25th November 2021

On the 25th of November 2021, HTx organised the third Expert Forum, a yearly meeting to connect with and collect input from other relevant European scientific projects and scientific societies.

The theme of the meeting was ‘The evidence ecosystem and our place in it – what basic outcomes to measure?’ The question for our partner projects was: ‘How did you choose your outcome measures?’ ‘Is it possible to identify outcome measures that are fit for purpose throughout the whole cycle?’ And if it is possible, how can we support and promote the choice of those outcome measures by all the actors in this evidence ecosystem?’

The meeting was kicked-off by the project leader of work package 4, Diana Delnoij. First, she explained what the evidence ecosystem entails and how to think about other decision points within the ecosystem. Secondly, Wim Goettsch, the project leader of the HTx project, explained how HTx fits into this evidence ecosystem. As a third speaker, Elise Quik presented how to pick the right Patient-Reported Outcome Measure (PROM) and launched the PROM Toolbox and PROM Select-App. After Elise, Andrej Segec from the European Medicines Agency (EMA) explained what the DARWIN EU initiative entails, followed by Jamie Elvidge (NICE) on his experiences with performing a policy sandbox on Covid-19. Before the break, Mackenzie Mills presented important work done by Impact HTA and Gema García Saéz illustrating the research done within a case study on diabetes providing details on which outcomes were chosen for this study

After the break, Milou Hogervorst (HTx) explained the work she and her team did on exposing the discrepancies found between clinical guideline developers and HTA-agencies in the assessment of multiple sclerosis treatment. After Milou, Linetta Koppert (H2O) shared her experiences as a clinician working with breast cancer patients and the importance of collecting quality of life data. For the finale of this meeting, Matteo Scarabelli shared the importance of involving and giving patients the lead in determining which outcome measures are most relevant to measure and base decisions on. In the closing conversation, hope for optimism was found, as some projects keep different organisations in the evidence ecosystem in mind, and standards for data sharing are in place. On the other hand, more should be done to make data available and connect public and private parties for the public good.