Presenter: Dr. Orla Galvin, Executive Director, EFNA
Duration: 25 mins total
Sections: 3

Often progress in improvements in quality of life, access to and quality of treatment and care, is hindered by a lack of data or knowledge gaps. Robust, current and accurate data is essential to support policy and advocacy actions.
For example

• to support health systems in delivering diagnoses, therapeutic intervention and care
• to support the need for research
• to implement policy
• or to advocate for access to services and supports

Owing to a lack of data the task of providing real world evidence, and data generation to support policy and advocacy actions is increasingly undertaken by patient groups to address key issues for their community.

Surveys can be an effective way to collect information in a meaningful and useful way.

The objective of this module is to outline what factors to consider when conducting a survey for the generation of data and real world evidence, what steps to take, and some pitfalls to avoid.