From the desk of J D Faccinetti, co-founder – The World Alliance of Pituitary Organizations, WAPO is attempting to provide a world view of pituitary disease through a “mapping project” that asks member organizations to provide information to a centralized database. A phase two update of the data is currently underway.
The project, which was initially organized by the WAPO board of directors and spearheaded by chairman Andrei Andrusov (Russia) and board member Sandra Mesri (Argentina), was presented in its initial phase in 2018. Twenty-two WAPO member organizations provided various levels of feedback in this first phase. Phase two is expected to have higher participation rates.
The first phase, whose principal objective was to learn about the differences in care and therapeutics worldwide, also identified some of the unmet needs of diverse patient organizations. The information obtained included prevalence statistics, advocacy best practices, and drug and medical experts’ availability, among other key points. Phase two has added questions to help assess the preponderance of substandard medications in some parts of the world, a critical issue that could be affecting pituitary patients.
The initial findings provided a fascinating global look at some of the key macro issues affecting organizations in their quest to deal with patient engagement and support activities. The data also shows the geographic discrepancies from critical drug availability to essential medicines lacking certification and access.
Patient member organizations also reported in the aggregate details of pituitary specialists around the world. This data, however, lacks specificity about the numbers of specialists, experience, and overall quality of care provided.
The data pointed to the critical areas of need from the patient group’s perspective. These, not surprisingly, include financial support, professional management training, programs focused on awareness and networking necessary to engage patients in their respective countries.
There are some limits to the overall study reliability due principally to two main factors: self-reporting data gathering, supplemented with web information to fill informational gaps, and lack of an independent audit to verify the data. There were also potential limitations in the sampling, primarily due to the lack of information from organizations not affiliated with WAPO, which could result in a significant bias.
Member organization participation is vital to minimize potential data reliability issues. The study strives to provide accurate and actionable data that will hopefully result in positive outcomes for the world pituitary community.
The positives, however, outweigh the potential limitations since the mapping study has put in motion the creation of several WAPO initiatives focused on the areas of the world in most need. WAPO is currently organizing task forces to assist member organizations with these issues in their respective countries.
Stay tuned to the upcoming “mapping project” update from WAPO on the new phase-two data.
Editor Note: J D Faccinetti is a member of the WAPO Board of Directors
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