Organization of the first national workshop for families in Switzerland concerned with hereditary cancer syndromes.

BACKGROUND

Although Patient and Public Involvement (PPI) workshops with families affected by hereditary cancer predisposition syndromes can benefit both affected individuals and their support networks, PPI workshops are rarely being organized. This article presents the planning and implementation of a one-day PPI workshop for families affected by Hereditary Breast and Ovarian Cancer (HBOC) or Lynch Syndrome (LS) in Switzerland.

WORKSHOP DESIGN & IMPLEMENTATION: The event was funded by the Swiss National Science Foundation and planned over a 12-month period. The program included expert sessions presented by clinicians and researchers; moderated, small-group participatory exchanges exploring patients' and families' unmet health, psychosocial and educational needs; and interactions with patient advocates. Participant satisfaction surveys were analyzed using descriptive statistics.

RESULTS

One hundred and five adults attended the workshop in Bern in May 2025, with representation from the three major linguistic regions of Switzerland. Almost 75% of participants reported a personal genetic predisposition to cancer. Most respondents were very satisfied or satisfied with the workshop (92%), and nearly all (96%) found the presentations engaging, with the topic of immunotherapy as an emerging treatment rated highest. The participatory exchange sessions were the most valued component of the workshop overall (97% positive feedback).

CONCLUSIONS

We provide proof of concept for the feasibility and positive impact of organizing a national workshop for families affected by HBOC and LS. The participatory nature of the workshop allowed affected individuals and their support networks to communicate unmet needs related to their personal experiences and suggest future avenues for research.