Where Social Media Meets Orphan Disease Research

rare disease research, rare disease clinical trials, Orphan Diseases, Clinical Trials
orphan disease researchers

In the following blog, Worldwide discusses the role social media plays as a bridge to patients for orphan disease drug development.

orphan disease researchers

Today, we are seeing social media influence the way we interpret, digest, and engage in all aspects of life – and clinical research is no exception, especially in regard to recruiting and retaining patients. At Worldwide, access to the right people is critical, and social media is an imperative tool to reach even the rarest of patients.

In “The New Imperative: Social Media in Orphan Disease Research,” published in International Clinical Trials, Barbara Zupancic, senior director of patient recruitment and retention at Worldwide, discussed the reality of using social media as a global communication tool for targeting qualified orphan disease research patients.

Looking at the opportunities social media offers

It is no surprise that social media has the power to support researchers’ endeavors to advance clinical trial performance, but to what scale? According to Statista, the global rate of social media penetration hit 45% in January 2019, and young people’s engagement across mediums has positioned it as a valuable hub for educational and promotional communications. That said, the adoption of digital media provides an opportunity to reach a significant number of targeted patients.

Aside from disseminating information, this modern tool poses opportunities to improve clinical research, specifically for rare and orphan diseases in the following ways:

  • Patient recruitment
  • Patient retention
  • Patient advocate engagement
  • Targeted advertising
  • Geographic reach

When looking at business and research opportunities, social media engagement should be a top priority for sponsors and contract research organizations (CROs) committed to uncommon success in the orphan and rare disease research space.

Understanding the vulnerabilities

While social media brings a variety of perks, there are also some downsides. Organizations leveraging social media must remain engaged and vigilant as to not become vulnerable to the potential for misinformation, blind break and biased recruiting. Without a clear understanding of how social media can create vulnerabilities, sponsors and CROs will open themselves up to threats to brand messaging, performance outcomes, and data integrity. Here are a few weaknesses social media can expose:

  • Haphazard brand messaging
  • Biased recruiting
  • Privacy issues
  • Undue influence on symptom reporting

The best way to protect both the research and the organization is to develop a clear strategic social media approach for monitoring and managing potential threats.

Uncommon strategies

In order to thrive alongside the growth of social media, a well-planned strategy is needed to protect the effectiveness of drug development research – especially for rare and orphan diseases. When the right safeguards are in place, the flow of information through digital platforms can be of the utmost value to patients, caregivers, providers, and more. So, what can you do? Here are some suggestions:

  • Use collaborative messaging between sponsors and CROs
  • Develop a proactive approach to information sharing
  • Maintain updated recruitment methods

As the world continues to rely on digital media for information and interaction, orphan and rare disease drug development professionals need to recognize that social media is a key tool for success. Social media platforms offer rare and orphan disease researchers much-needed access to patients all over the globe.  

To learn more about the opportunities, barriers, and uncommon strategies for social media engagement in clinical research, check out the article, “The New Imperative: Social Media in Orphan Disease Research,” from International Clinical Trials.

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