Healthcare professionals in meeting room; key opinion leaders concept

Tips for Working With Key Opinion Leaders in Rare Diseases

Key opinion leaders (KOLs) play an essential role in communications and sharing information. KOLs are especially vital in rare disease research and treatment, where information can be difficult to come by.

Knowing Your Key Opinion Leaders

Key opinion leaders are defined by their ability to influence healthcare decision-making. Typically, this influence comes from years of experience in a particular field or area of research. Common KOLs include:

  • Medical investigators and researchers.
  • Patient advocacy groups and their membership.
  • Health system managers.
  • Hospital and health center leadership and staff.
  • Physicians and medical school professors.

Key opinion leaders can be particularly valuable sources of information when it comes to rare diseases, where timely, accurate information can be otherwise difficult to find. KOLs may be the only source of information on particular topics related to a certain rare disease.

Parexel Vice President of Regulatory Consulting Lucas Kempf states that during his time at the Food and Drug Administration (FDA), “we recommended that companies engage with patient groups and key opinion leaders (KOLs) as early as possible.” Pharmaceutical companies that failed to do so, instead relying on information found in medical textbooks or articles, frequently overlooked information material to the patient experience — or to the success of their pharmaceutical endeavors.

Smiling doctor using stethoscope to check toddler; key opinion leaders concept

Building KOL Connections in the Rare Disease World

The internet has facilitated communication, especially among rare disease patients, researchers, treatment providers and other engaged parties. Today, leveraging data can help identify key opinion leaders, while encouraging digital interactions can help these KOLs reach key audiences.

Look Closely at Rare Disease Patient Organizations

In a 2022 Orphanet study, Christina Q. Nguyen and fellow researchers found that rare disease patient organizations (RDPOs) play a number of roles in communication and therapeutic innovation. Many of these roles overlap with the work of KOLs, making RDPOs a valuable source of opinion leadership.

For instance, RDPOs may:

  • Recruit patients for clinical studies.
  • Connect patients and providers for clinical care and support.
  • Collect data on patient-reported outcome measures.
  • Promote various projects, including research projects, biobank development and establishing patient registries.

“[RDPOs] are communication conduits between carers, patients, and other stakeholders,” write Nguyen and fellow authors. Since RDPOs have a particular focus on patients, however, it’s important to consider the data before aligning with an RDPO as a key opinion leader.

Map Relationships

While pharmaceutical companies and medical affairs teams expend considerable effort to reach out to key opinion leaders, “few take advantage of network mapping tools and relationship-building principles from a market access lens,” write Guidehouse’s Kathryne Kirk, Meghan Cioci and Matthew Franceschini in a guest column in Outsourced Pharma.

When considering a KOL connection, don’t just look at the opinion leader as an individual. Instead, look at them as part of a web of relationships. How does this KOL relationship lead to the next? If you share information with this opinion leader, who else gains access to that information — and how might your relationship with those parties be affected?

Don’t Overlook Social Media

“Physicians and patients are increasingly represented on social media and perform as so-called medical influencers,” writes Kathrin Rothfischer in a 2021 article. Their influence can increase awareness of a rare disease, help share information and sway opinions on health topics.

Opinion leaders who engage primarily online are sometimes called digital opinion leaders (DOLs). “There is sometimes crossover between a traditional KOL and what is defined as a DOL, but DOLs tend to be a separate group,” says Mary McGregor, founder and managing partner at healthcare marketing agency Engage. Building a productive relationship will require an understanding of how digital opinion leaders connect and communicate.

As both sources of expertise and recognized names, key opinion leaders play essential roles in rare disease communities. By understanding the reach of any particular KOL, providers and other interested parties can build stronger relationships for better communication and expanded awareness.

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