May 18, 2018
Advocacy Relations Department Prioritizes Diversity and Recruitment
Team members attend Lupus Foundation Walk, engage minority health group
While the dedication to patient-centricity is present throughout all the work done at Continuum Clinical, nowhere is it more apparent than in the Advocacy Relations department, where the team of five works with foundations, associations, and other patient advocacy groups across therapeutic areas and disease states both common and rare. Continuum’s advocacy team often bridges the gap between life science companies and patients, acting dually as a megaphone for the patient voice and an interpreter for pharma sponsors who are eager to better understand the populations they aim to serve.
The work is challenging but its importance is gaining recognition among pharmaceutical companies who must respond to the ever-changing needs of patients, new and sometimes prohibitive rules imposed by regulatory bodies, and the evolving landscape of medicine in general. As industry moves toward proactive patient-centricity, developing and maintaining relationships with advocacy groups becomes invaluable to clinical trial recruitment and retention.
“Pharma needs to be in these communities, but they don’t have the bandwidth to do so,” said Continuum’s Senior Advocacy Relations Manager Kristen Huehbner. “As an advocacy team, we have the credibility to get into these spaces and work closely with people impacted by a variety of diseases and disorders. And that’s an important distinction – these are not patients or statistics – these are people living with a condition. It’s people first, disease second.”
As the differences in drug interactions and side effects among patient populations is better understood, the need for diversity and inclusion practices is heightened. Enrolling trials with participants in numbers that mimic the demographics of patient populations may not be mandated, but it arguably leads to better data and in turn, better medicine. To this end, the Diversity and Inclusion function of Continuum’s Advocacy team has prioritized not only relationships with disease-specific advocacy and awareness groups, but relationships with minority health groups as well.
“As an advocacy team, we have the credibility to get into these spaces and work closely with people impacted by a variety of diseases and disorders. And that’s an important distinction – these are not patients or statistics – these are people living with a condition. It’s people first, disease second.”
May is Lupus Awareness Month, and thousands of people across the country will participate in one of dozens of “Walk to End Lupus Now” and “Walk With Us to Cure Lupus” events sponsored by the Lupus Foundation of America and Lupus Research Alliance, respectively. Two of Continuum’s advocacy relations team members, Huehbner and Senior Advocacy Relations Manager Angela Rochelle, attended the April 21 Walk to End Lupus Now walk in Atlanta, solidifying partnerships with the Lupus Foundation and Black Health Matters.
“People align with communities they identify with,” Rochelle said. “Working with Black Health Matters when trying to gain insights into the lupus population makes sense because of how disproportionately the African American community is affected by the disease.”
Lupus is as much as three times more prevalent among women of color than among Caucasian women. Recent research indicates that lupus affects 1 in 537 young African American women. The Advocacy team often begins relationships with indication-specific advocacy and awareness groups and then, after gaining insights and collecting patient stories, expands their networks to include ancillary groups that may allow access to subsets of the affected populations.
The goal of these relationships, Rochelle said, is to be ever-present in the community so that when a new trial is enrolling, Continuum has already established trust and understanding with the patient population.
“Continually sharing information about the condition, the patient journey, the diagnosis pathway – it all leads to better recruitment down the road,” she said.
If you’re interested in learning about how our advocacy services can help you meet enrollment milestones, please contact us.