2022-RA-1644-ESGO The need for a unified appraoch in patient advocacy for global women´s health: a PARSGO initiative

• Published in: International journal of gynecological cancer Vol. 32; no. Suppl 2; pp. A464 - A465
• Main Authors: Nasser, Sara, Aboukhalil, Joelle, Bilir, Esra, Hassan, Karim Loreti, Katsara-Antonakea, Niki, Sehouli, Jalid
• Format: Journal Article
• Language: English
• Published: Oxford BMJ Publishing Group Ltd 20.10.2022; BMJ Publishing Group LTD
• Subjects: Advocacy; Funding; Vaginal and vulvar cancer
• ISSN: 1048-891X; 1525-1438
• DOI: 10.1136/ijgc-2022-ESGO.1004

Introduction/BackgroundPatient advocacy groups(PAGs) play a vital role in serving as catalysts for empowerment within global women´s healthcare. However, there is no unified patient advocacy network within the Middle-East and North -Africa region(MENA). This pilot study was performed as an initiative of the Pan-Arabian Research Society for Gynecological Oncology(PARSGO) to evaluate the visibility and accessibility of PAGs within the MENA-Region.MethodologyWe conducted a search using online search engines and social media channels(SoMEC) in local languages. Specific women´s health-related keywords were used in various combinations and systematically with each country from the MENA region. The search included all legally registered patient advocacy groups with a focus on women´s cancers or women with cancer based in, or associating with the MENA-countries. PAGs with a focus outside of women´s cancers and individual influencers or patient advocates were excluded from the search.ResultsA total of 10 documented legally-registered PAGs appeared in the search from nine countries. All these groups were easily accessible online. Only half (50%, 5/10) had an active homepage(activities not older than 3 months).All PAGS had at least one active SoMeC with recent activities not older than 2 weeks. More than half(60%, 6/10) had their homepage and SoMeCs in multiple languages. Within those groups none received their funding from membership fees, whereas most funding came from sponsorship and donations(100%, 10/10) and/or official government funding (70%, 7/10).Majority(90%, 9/10) had a clearly identifiable mission statement. Only half(50%, 5/10) had specified cooperation’s with other advocacy groups within the region.ConclusionAlthough, further surveys are required, our pilot study shows a lack of online visibility and accessibility to PAGs in the MENA region. As a PARSGO global community, we need to focus on providing a unified and transparent platform to increase accessibility and dialogue for local and regional patient advocacy groups.