Questions From Panel #1: Exploring Community Models of Care
Answered by Dr. Kim Rhoads of Umoja Health and UCSF Helen Diller Family Comprehensive Cancer Center
There has been an increase in corporate conversation about increasing access and equitable inclusion in clinical trials. How have you experienced this over the past few years? What’s the reality in the community?
These conversations have manifested in my life as increasing engagement with Pharma companies who want “access” to communities of color. Whether they are actually able to increase access for patients to clinical trials is a different matter. Efforts by pharma (I am using that here instead of “corporate”) to increase access to clinical trials do not address the barriers across the spectrum. The biggest barrier is that the trial is not available where the patient is receiving care (J. Unger 2019); 50+% of patients are treated in settings with no trial for their specific cancer. While it is easy to say we should simply decentralize trials, the reality of centers which do not specifically focus on cancer hosting a cancer clinical trial presents all types of infrastructural “sub-barriers” if you will. For example, most safety net hospitals in California are not equipped to deliver radiation therapy, so if trial includes radiation therapy, it cannot be delivered in said setting. If the hospital targeted for decentralization does not have an investigational drug pharmacy, then neither novel therapeutics nor standard therapeutics can be handled in that setting. Some of these drugs require compounding or mixing on site before administration. This requires additional infrastructure. This is just one example. On the other end of the spectrum—take patient eligibility. If eligibility requirements are not tailored to the population (i.e., we will enroll people even if they have brain metastases or mild renal insufficiency which is often disproportionately encountered in communities of color), the availability of the trial at that location will be of little or no impact on diversification. So I think we have to take this conversation with a grain of salt because it does not address the hidden barriers about hospital capacity for trials or relaxation of eligibility criteria.
Lastly, I will say, there is often a lot of talk. But after all is said and done, a lot more is SAID than done. Action is what is needed to make change.
I’m here representing Exelixis, an oncology-focused biotech company headquartered in Alameda. We have a robust advocacy program that is a critical component of our business and are always seeking opportunities to expand our community partnerships. In your opinion, what are some ways our industry can better partner with CBOs to improve patient outcomes?
Industry can partner better by putting their primary agenda aside. Partnering with community when there is a hidden ask (i.e. will you please join our trial) has to take into account and address the concerns of the community which may have nothing to do with the industry’s agenda. Ask patients and CBO’s that you want to partner with what they believe will improve patient outcomes, combine that with the factors that industry thinks will improve patient outcomes and co-create the agenda on how to achieve the goals you have laid out together.
Second, avoid transactional engagement. That means that you have to stay engaged beyond the life of the activity that provided impetus for the initial engagement. Consider whether or not you have opened up a relationship with bi-directional flow. Can the partner call on you for things outside of your original ask, or have you created a don’t call us we will call you relationship? The answers to these questions will tell you if your relationship is transactional or not.
At UCSF cancer center, we strive to support year-round, non-transactional community engagement. That means community partners can reach out to us for literally anything. Just like you might with a friend. If we can service it directly, we do. If we cannot, we work with partners and collaborators to connect our community partners to whatever resources they are seeking.