Four continents, one message: PID data collection is essential

IPOPI’s World PI Week campaign, which ran from 22-29 April, focused on turning real-world data into better care for patients with Primary Immunodeficiencies (PIDs). This year’s theme highlighted the importance of data collection and sharing voices from around the world to promote awareness of the condition.

Why data collection matters
The campaign featured video interviews with individuals from four continents, including Martine Pergent, IPOPI President, Hellen Ayaga from PIDs Kenya, Jose Verstegen from Stichting voor Afweerstoornissen, Jaime Brianson from Fundacíon IDP Chile, and Dimas Sugiharto from Indonesia Primary Immunodeficiency Patient Society. These interviews emphasised the need for improved data collection to provide better care for patients with PIDs. Moreover, they highlighted why data collection matters, and showcased examples of the hurdles patient organisations face when engaging in this activity.

The voices of Martine, Hellen, Jaime, Jose, and Dimas highlight the importance of data collection in bringing about change. Together they emphasise that collecting accurate information can lead to better patient care, strengthen patient organisations and give patients a voice in the conversation. In addition, they stress the crucial role of collaboration between patient organisations, medical societies, and other key stakeholders in gathering and sharing valuable data. Ultimately, data collection becomes a powerful tool for understanding the real situation of PIDs and improving diagnosis and care.

The campaign also put a spotlight on IPOPI’s data tool, the PID Life Index, which measures the availability of PID diagnosis and care across the world. The tool enables stakeholders to understand where the gaps in care are and work towards filling them.

A thank you to our membership

IPOPI would like to thank its NMOs and our video campaign participants for helping us make WPIW 2023 a success and recognise the importance of data collection for better PID patient care. By sharing the voices of individuals from different continents, IPOPI and its member organisations were able to showcase the global impact of PIDs and the need for continued efforts to improve diagnosis and care.

Visit our YouTube channel to see all videos.