By Guest Contributor: Bansri Desai, PharmD, PhD Candidate in Pharmaceutical Health Services Research, University of Maryland School of Pharmacy 

Opening remarks for the National Health Council (NHC) 2020 Virtual Science of Patient Engagement Symposium were presented via video by Mr. Kenneth Frazier, Chairman and Chief Executive Officer at Merck & Co. Ms. LaVarne Burton, President and Chief Executive Officer of the American Kidney Fund and Mr. Kenneth Mendez, President and Chief Executive Officer of the Asthma and Allergy Foundation of America provided reactions to Mr. Frazier’s video remarks.  

The theme of the Symposium was “Including More Voices: Improving Diversity and Representativeness,” and Mr. Frazier shared with attendees Merck’s perspective on patient centeredness, diversity, and representation in research, particularly in context of the public health and social justice challenges the US currently faces. He described the current confluence of three major catastrophes: the COVID-19 pandemic, the economic downturn, and continued racial injustice and its aftermath, all of which have a disproportionate and devastating impact on communities of color. He stressed, “It is time to move beyond platitudes and commit to actions that create true progress toward social justice and health equity.”

Communities of color often face a multitude of inequities, including greater difficulty accessing timely and quality care and systemic bias within the health care system. Using cancer and COVID-19 as examples, Mr. Frazier discussed the importance of recruiting racially, socioeconomically, and demographically representative clinical-trial participants that better reflect the diversity of patient populations. He highlighted several initiatives Merck has undertaken aimed at improving diversity, representation, and economic inclusion within the clinical trial process. 

Over the past decade, the role of patients in the continuum of drug development has evolved thanks to the tireless efforts of stakeholder advocates. However, there is room for further improvement. Mr. Frazier asked attendees to consider how progress thus far can be built upon and what will it take to make even greater progress in the next decade. Close partnerships with patients throughout the process is essential, and a diverse coalition are critical to making change. 

Ms. Burton echoed Mr. Frazier’s call for continued progress, stating, “No matter what we’ve done in the past, we can do it better – the outcomes demand that we do.” She added that serious issues of access and quality of care among people of color that lead to disproportionately negative outcomes are not unique to any one disease state, but impact all patient communities. Ms. Burton shared the American Kidney Fund’s approach to engaging patients through their advocacy network with primary goals to establish a relationship and trust. Only then can patient involvement in policy, clinical care, and clinical trials be broached. Ms. Burton emphasized, “We’ve got to make sure that, not only are we calling on patients to join us, but that we are listening to them and that we understand their perspective.” 

Mr. Mendez also discussed the continued health disparities faced by people of color. The Asthma and Allergy Foundation of America’s 2020 report on disparities in the asthma and allergy patient community, Black, Hispanic, and Indigenous Americans were found not to have benefited as greatly as other patients from the tremendous advances in therapies made in recent years. He noted that health disparities come with both a “heartbreaking human cost [and] a staggering financial cost to Americans,” and that no one organization can tackle this challenge alone – partnership across organizations and disease states is needed and Mr. Frazier’s opening remarks provided grounds for a fertile discussion.

Watch Ken Frazier’s opening remarks.