University of Southern California (USC) Comprehensive Cancer Center and Lazarex Cancer Foundation report to be “making history” by introducing the new IMPACT program: Improving Patient Access to Cancer Clinical Trials. The duo report it is the first type of program combining “financial reimbursement, outreach and education programs” to connect diverse patients with cancer research.
The IMPACT initiative includes the following collaborators:
- USC Norris
- Lazarex Cancer Foundation
- UCSF Helen Diller Comprehensive Cancer Center
What is difference between IMAPCT from the countless other programs in the past that have sought to diversify participation in clinical trials?
IMPACT’s focus may have clinical research as a care option dynamics. Incidents of cancer in the African American community, for example is proportionally high; this also happens to be the case for Latinos as well. IMPACT may seek to connect actual care options to clinical trials. This represents an important and compelling service. Minority groups can significantly benefit from access to high quality cancer care options.
IMPACT includes financial reimbursement. The USC-originated press release notes the financial challenges associated with clinical trials (e.g. travel, hotels, parking, gas, etc.) Many middle to working class Americans simply can’t afford to participate in clinical research—even if they desired to. For minority groups such as African Americans, Latinos, certain Asian demographics and Native Americans, this challenge is probably more pronounced. TrialSite News applauds this effort on the part of the two driving institutions (again Lazarex and USC). Lazarex Founder David Dornsife stated “by offering reimbursements through IMPACT, patients can say ‘yes’ to participating in clinical trials.” The well-intentioned team believes this to be the critical factor to open the doors to more minority participation. Mr. Dornsife is an impressive character having donated $200 million to his alma matter. He has accumulated considerable wealth in business and continuously gives back in substantial sums to causes worldwide. We applaud him here.
The IMPACT program represents an interventional study itself to assess impact on clinical research as care option for minorities. An interesting concept, the sponsors have designed a high quality, well-established Southern California network of health institutions to evaluate this approach to engage and increase minority clinical trial participation. Darcy Spicer, MD, chief medical oncologist at USC Norris emphasized “ USC Norris is situated in an area of rich diversity, thus our physicians and researchers are uniquely positioned to gather vital statistics in populations that might otherwise go uncovered.” Dr. Spider speaks the truth in that USC is situated in an incredibly diverse district sandwiched by downtown Los Angeles and Latino barrios to the north and the traditionally large African American South Central district to the south (actually rapidly becoming majority Latino).
The program includes USC’s community partners and oncology clinics with “NeighborGood. This represents the beginning of what TrialSite News believes is the absolute key to greater participation among minority groups. As part of “NeighborGood focus”, the IMPACT program will coordinate community outreach initiatives including community organizations, advisors, health clinics, health fairs, etc. to raise awareness about relevant health topics. It is this last point that we believe the Southern California team is truly on to the next social innovation in need to truly diversify clinical trial participation.
TrialSite News principals have nearly two decades of experience with clinical trial patient recruitment. Many of the same participation challenges repeat themselves similar to a science in Groundhog Day. Moreover we are involved with the Whole Person Care initiative in Los Angeles County supplying software to manage the intensive social determinant of health-driven care coordination efforts for some of the most at-risk of Los Angeles County residents. TrialSite News sponsored a survey of African Americans in southeast Texas to address challenges and potential solutions to increase diversification in clinical research.
We offered that considerable skepticism and mistrust of government; health systems and big pharma exist in African American communities (we know this is similar for Latino communities and the current executive branch probably doesn’t help). We believe that a concentrated and systematic community organizing strategy—driven by key community stakeholder—represents a fundamental prerequisite for transformational participation.
This effort would include educating and hiring navigators out of the community; true community participation and depending on region could involve schools, churches and other community-level institutions. It must be much more than just awareness building. Frankly, top down approaches will not work in any deep or systematic way. We applaud Mr. Dornsife, Lazarex and USC Norris as well as the other collaborators for making this move to what we agree appears to be an innovative model. We think they are headed in the right direction. But they will need to elicit, fund and support a level of community participation that is considered unorthodox in most standard government, health system or large academic medical center circles—we believe—to break away and separate itself from the pack of other countless attempts to permanently diversify clinical research participation.