OPINION || Health Equity Collective

The views and opinions expressed in this opinion article are those of the author and do not necessarily reflect the views or positions of Janssen R&D, its parent Johnson & Johnson company, or any of its affiliates or employees. ?

From February 22nd through the 23rd I had the opportunity to be surrounded by individuals who aren’t just visionaries or DEI philosophers but the true practitioners that implement sustainable strategies. They aim to increase awareness while reducing access barriers for patients who have been dismissed, overlooked, or silenced. DEI prior to 2020, was not on the radar of many within the industry BUT within the underserved communities it was the lifeline that many were fighting to get support or raise awareness about – this was REQUIRED because it impacted their health and their way of working. It was out of necessity that these efforts are sustainable and not just for some photo-op.

At the inaugural Health Equity in Clinical Trials Congress, I was able to COMPARE, LEARN, & EXPAND.

COMPARE – This congress brought together individuals from large and small pharma which allowed me to contrast our efforts to others in the industry. It was refreshing to see that many of the big names in pharma were leaning in on submitting diversity plans with robust strategies and data-driven recruitment goals. Additionally, the industry is beginning to understand the importance of patient and site voice when optimizing protocols.

LEARN – Over the course of two days, I was able to learn from individuals who have been putting in the work for decades. Their insights were invaluable not only due to their ties to these communities but also because of their lived experiences that highlighted the barriers as well as injustices that exist within the medical field. We had patient and non-profit organizations present their stories and findings that expressed their frustrations with industry tactics being transactional. All of these organizations and trusted voices called for SUSTAINABLE efforts that EMPOWERED the community with science, tools, and financial stability. By investing in these communities, efforts could be enduring resulting in generational changes.

EXPAND – I must admit that this congress yielded the BEST expansion of my network within pharma and DEI work. There were many who I knew previously on a surface level due to participating together on panels; however, this congress created the space and time for me to connect with them on a deeper level while ideating potential collaborations. The most impactful expansion was learning about trailblazers within the DEI space like Edie Stringfellow , Allison Kalloo, MPH, CD , Jocelyn M Ashford , Shonta Chambers , Leigh Boehmer , and Maria Vassileva . They impenitently highlighted historical and current medical atrocities along with the lack of enduring alliances with underserved communities. To change the narrative, they firmly challenged everyone in the room to follow through on their calls to action and not be sidetracked by small wins. Although each win gets a step closer to where we should be regarding health equity, there is still a lot of work that needs to be done!

Biggest takeaways from the Congress were:

• Meet the patients where they are – this isn’t limited to just physical location of a study site, this allow relates to how we educate and support the patients within underserved communities. We can’t assume what their level of comfort or knowledge is when it comes to diseases and clinical research.
• Sustainable actions are the only way – Setting up shop and leaving after a study is completed does more damage than good within underserved communities. It gives the impression of a transactional relationship with no room for an enduring alliance. Sponsors and organizations must be willing to invest in long term relationship building with the community and empower its people with resources that aid in providing access to better health management.
• Data within the DEI space has a long way to go – historically collection of demographic data has been inconsistent and limited to the US. With more studies implementing DEI goals, we now have the opportunity to understand the nuances across different patient groups. It is well known that many patients fail to be included in claims datasets due to access barriers so leveraging data to identify opportunities can be tricky. Lastly, the impact that DEI recruitment will have on timelines, study related cost, and market potential will need to be quantified in the coming years.

Rarely have I witnessed an ENTIRE congress dedicated to DEI initiatives, impact, and future perspectives. Historically having a session focused on DEI was either non-existent or crammed at the end when most attendees would be shuffling to airport to get home. Therefore, I highly recommend this congress not only for learning but for reaffirming one’s mission towards health equity for all.?