Expanding the Role of Advocates in Shaping, Enhancing Cancer Research
Everything we do at NCI begins and ends with the cancer patient in mind. In our ongoing quest to maintain that focus, NCI is fortunate to receive expert outside advice and recommendations from four federal advisory committees, each offering a unique perspective on how we can best serve patients.
The Director's Consumer Liaison Group (DCLG) brings to NCI the thoughts and concerns of those who have faced cancer, in their own lives and in the lives of those whom they represent. The DCLG is a forum for lay representatives to discuss NCI programs and, together with scientific experts, help develop a shared vision and understanding of today's best science and where tomorrow's research will take us. The ability of DCLG members to understand the science of cancer, the challenges of its complexities, and the opportunities to change the course of disease through investment in science provides NCI with a remarkable tool for communicating NCI's mission and accomplishments.
At the time the DCLG was conceived, NCI's ability to engage members of the cancer advocacy community was limited. Today, in large part because of this board, NCI routinely includes advocates and prepares them to participate in the review of grants, the planning of scientific programs, and the development of educational materials. Yet, there is more we could do together.
Last fall, the DCLG, at my request, convened a working group of advocacy leaders - with widely varying cancer experiences and backgrounds - to recommend how NCI can most effectively involve advocates in our work to help accelerate progress, benefit patients, and improve public health.
During last Thursday's DCLG meeting, the Advocates in Research Working Group discussed its progress on a report slated to come before the full DCLG in October. My thanks to the members of the working group, who are putting in many hours and carefully considering better ways we can work together, from the scientific education of cancer advocates to greater participation in and knowledge of clinical trials. The DCLG is uniquely positioned to facilitate communication across the advocacy community, and we have every hope that the working group's report will spark important discussions.
Last year, recognizing the importance of the advocacy community, NCI realigned the Office of Advocacy Relations (OAR), bringing it into the Office of the Director. Acting on a charge to enhance NCI's relationships with our external stakeholders, OAR is, today, closely considering how it forges connections between NCI and the advocacy community, at both the individual and organizational levels, and how we can do better. A cornerstone of these connections is the DCLG. We need the DCLG to be a strategic partner, informing NCI activities and coordinating support activities in the community.
To that end, we must utilize the DCLG as an important resource, for NCI and for the National Cancer Program. We have long talked about the need to focus on our common interests rather than accentuate our differences. It is a message that bears frequent repetition. Indeed, if we are going to make a difference in the course of these diseases, we must be united in purpose and speak with a common voice.
The DCLG, along with NCI's other advisory boards, will be a key player in disseminating this message of unity and working together across the diverse cancer community to enhance the efficacy of our vast cancer research enterprise and its ultimate goal of changing the face of cancer.
Dr. John E. Niederhuber