Gilliosa Spurrier-Bernard, trained as a Geologist and in Environmental Evaluation, worked in the Sahel region of West Africa in water management and Community development, and then as a partner in an Environmental Consultancy NGO, working with local government and the private sector in Site engagement. Both these roles were primarily concerned with grassroots education, the generation of community data and facilitating the enabling of communities to identify problems and identify relevant and workable solutions. She started MelanomeFrance when her husband became a stage 4 melanoma patient. As president of MelanomeFrance, she has written contributions to the French HTA for Drug Evaluations, runs a 1000-member Patient Forum, has been a member of the INCA (French National Cancer Institute) project selection committee and contributes to the H2020 Oncobiome project. As a Core member of MPNE, she organises European patient and stakeholder Conferences, with a special interest in Community Science education. She has contributed to ASCO Melanoma Treatment Guidelines, the ESMO Patient Guide to Immuno-Oncology Adverse Events and is currently working on CTCAE usability for reporting of Immunotherapy AEs. In 2020, she was responsible for the organisation of the first WECAN SCIENCE Event for Cancer advocates and intends to further expand WECAN’s SCIENCE training during her WECAN chairmanship. Special interest in FAIR Data creation and use, better Patient involvement in Pharmacovigilance and in PO driven Research.
Scientific education
1987 – 1991 BSc Earth Science, MSc Soils and Land Evaluation.
Advocacy-specific education
2016-2017 EUPATI course for Patient experts in the Medicines Research and Development Process
Expertise/Projects:
- professional background in NGO and grass-root initiatives in Africa and in EnvironmentalConsultancy.
- Currently partner in some technical start-ups, responsible for HR, and finances
- Current Chair WECAN – Network of Leaders of European Pan-Cancer Umbrella Organizationsproject management for H2020 UMcure, H2020 Share4Rare
- 2014-Present : Founder and President of MelanomeFrance
- 2015-Present : Vice-president of Melanoma Patient Network Europe
- 2016-Present : European Cancer Organization, Patient Advocacy Committee
- 2019-2020 ASCO Melanoma Clinical Treatment Guidelines Committee
Selected papers :
Essential requirements for Quality Cancer care in Melanoma, Critical Reviews in oncology and Haematology, Feb2018, Vol122, pages:164-178, doi:10.1016/j.critrevonc.2017.12.020 Social media as a tool for assessing patient perspectives on quality of life in metastatic melanoma: a feasibility study. Health Qual Life Outcomes. 2018 Nov 29;16(1):222. doi: 10.1186/s12955-018-1047-z.
Systemic Therapy for Melanoma : ASCO Guidelines J Clin Oncol (Mar 31 2020): Jco2000198. http://dx.doi.org/10.1200/jco.20.00198
