13 Mar Patient Partners in HTx: EURODIS and EMSP visit to University of Bern
On the 29th of November 2019, two patient representatives, from Eurordis – Rare Diseases Europe and from EMSP – European Multiple Sclerosis Platform, visited the Institute of Social and Preventive Medicine (ISPM) at the University of Bern, led by Prof Georgia Salanti, responsible for a case study on Multiple Sclerosis in the HTx project.
Photo: On the left, Hamza Tasnim, PhD candidate at the ISPM (University of Bern, Prof. Georgia Salanti group). On the right, Nora Kriauzaitè from EMSP and Matteo Scarabelli from Eurordis.
Starting from November 2019, the European Multiple Sclerosis Platform assumed its role in the HTx project in cooperation with Eurordis, to liaise the Multiple Sclerosis community with the HTx partners and work. Such a link will allow to inform patients on the project and engage them as an active part in the definition of methods and interpretation of the results.
One of the four case studies of the HTx project, focuses precisely on Multiple Sclerosis and is conducted by the Institute of Social and Preventive Medicine, at the University of Bern. Here, the primary goal is to create statistical prevision models of the best treatment for preventing relapse in MS patients, based on individual patient characteristics and effectiveness criteria, applied on a large arsenal of potential therapies.
In the framework of HTx, this piece of work is an embryonal example of what Health Technology Assessment might look like in the near future. This meeting between the Bern group and patient representatives, as the first of this close cooperation, started to link the academic work of the experts with the knowledge patients has of their real-life conditions and preferences, which is essential in performing HTA.
Professor Georgia Salanti and two PhD candidates compose the group working on this case study, namely Chalkou Konstantina and Hamza Tasnim. Matteo Scarabelli and Nora Kriauzaitè have attended as Eurordis and EMSP representatives respectively.
For more information about the involvement of patients in the HTx project, or about this specific visit, please get in contact with Matteo Scarabelli at Eurordis matteo.scarabelli@eurordis.org +33 1 56 53 13 64 or Nora Kriauzaitè at EMSP programme.coordinator@emsp.org.