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Policy Research

Goal:
The policy research arm of the project is designed to increase knowledge of the processes involved in developing and implementing health policy impacting the three R’s: 1) Recruitment, 2) Retention and 3) Return, (i.e., post-trial benefit) of minority and underserved patients to oncology and asthma clinical trials.

Objectives:
The policy research arm thus has three main objectives, i.e., to: (1) assess policy issues related to underrepresented populations’ participation in oncology and asthma clinical trials, (2) organize and conduct a National Policy Development Summit Meeting, and (3) conduct dissemination activities involving policy education and advocacy relating to minority/underrepresented participation in oncology and asthma clinical trials. A description of each objective is included below:

1) Assess Policy Issues. This task was initiated with background research to identify both points of agreement as well as gaps in the existing literature on oncology and asthma trials, with particular regard to development of state and national legislation, regulations, and policy. In addition, decision-making processes that lead to formation of public opinions on clinical trials as well as perceived needs and concerns about underrepresented population’s representation in medical studies were explored. .

2) Organize and Conduct a National Policy Development Summit Meeting. Planning for the National Policy Roundtable Meeting was concurrent with the policy research activities mentioned above. Invited attendees included approximately 150 stakeholders in the area of oncology and asthma clinical trials. The Summit had several purposes, i.e., to: (1) build a common understanding of current policies, (2) review model policies from the three sectors, (3) identify feasible policy strategies to increase access and participation by underrepresented groups, and (4) reach a consensus on policy recommendations and create an action plan for implementation.

3) Dissemination and Education. The National Policy Roundtable consensus document will be the foundation for a coordinated set of education and dissemination activities promoting its recommendations. Organized by the CDPCRC and the ICC through their alliances with national groups and coalitions, this final phase of policy promotion activities will be aimed at educating the general public, researchers, lawmakers, and other stakeholders in the process of increasing participation of minority and underserved patients in clinical trials.