iToBoS project presents the second out of a series of three online educational modules for the European Melanoma patient community. The kick-off session was on May 11th, 2023.
The module aims to address the following objectives in the area of education, community building and policy/ advocacy context:
Accessible education on polygenic risk scores for patient advocates: Provide concrete and accessible education on the topic of polygenic risk scores, including sufficient background on genetics, in a format that is effective for the specific melanoma community of patient advocates as well as the broader cancer patient advocacy community.
A learning melanoma patient community: Build a learning Melanoma patient advocacy community as a part of a larger European cancer patient community with interest in research and active research involvement around the topic of genetics, polygenic risk scores and their relevance for Melanoma risk scores, familial Melanoma (to be addressed in module 3), risk-based early detection strategies and consumer genetics.
The relevance of the concept for policy: Create understanding for the importance of the topic for patient advocacy and policy context overall.
The main target audience are Melanoma patient advocacy experts with a particular interest in research and risk-based early detection. Additional audiences are (i) all melanoma patients with an interest in understanding polygenic risk scores, their contribution to the calculation of Melanoma risk factors and their use in risk-based approaches, such as in screening, early detection, treatment and disease management; and (ii) patient advocates from other cancer communities with interest in polygenic risk scores, risk-based approaches and health and related research outside the Melanoma context.
The design and the delivery of the training modules builds on MPNE's established expertise in the education of patient advocates, with methods that are based on adult learning styles and that are effective in a heterogeneous group of non-native English-speakers from diverse educational backgrounds. This module is therefore incorporating group-based learning, starting with a “book club”, combined with asynchronous tasks.
The module is available on the MPNE learn base under the following link: https://mpneurope.mylearnworlds.com/course/prs4pa