The growth of social media interactions has played a critical role in advancing knowledge and awareness of orphan and rare orphan diseases. Social media tools have helped stakeholders working in rare disease clinical development to increase awareness of diseases or identify patients for clinical trials. Social media can also help patients and advocacy groups to navigate a specific disease − whether it’s to build an understanding of the disease, help create a patient community or find medical experts.
Having the right strategy for navigating the ever-growing social media landscape is critical to getting your message heard. These strategies can be implemented to pre-identify patients for a clinical trial or to learn valuable information about a specific indication population. It is vital that you integrate the right social media plan into your communication program so your message is effective.
The benefits of using social media in patient recruitment include:
- Connectivity with patients, leading to more patient-centric trials. UBC worked with a sponsor who developed its first Facebook page for a pediatric multiple sclerosis study. Integrating a social media strategy allowed for enhanced trial reach, targeted outreach and messaging, and helped exceed enrollment projections.
- Social media can be a low-cost strategy that allows you to precisely target key stakeholders.
- Direct reach to rare disease patients who are very active on social media. Partnering with advocacy groups and patient communities allows you to have your study information appear on the groups’ Facebook pages or websites, directly reaching your target audience.
Join me on October 16 and 17 in Washington, DC at the NORD Summit. I will be leading a lunch roundtable on the social media strategies needed to make your message heard−especially for programs specific to rare and orphan indications.
I will discuss how you can develop an online presence and pre-determine your strategy. I will also help you think about your audience and how it’s critical to integrate tools that are actually used by your audience (i.e. Facebook, Twitter, Instagram, Snapchat). Come find out more about the importance of thinking about what messaging to incorporate into your rare disease patient strategy and what will drive social media response.
I look forward to speaking with you at the conference. If you want to learn more about UBC’s solutions for small patient populations, or if you’d like to connect before or after the summit feel free to contact me.