Introduction/Background Patient 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.
Methodology We 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.
Results A 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.
Conclusion Although, 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.
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