Speeding Treatments to Patients - The Community's Role

The NCI has been working to engage our Director's Consumer Liaison Group, the DCLG, in reaching the cancer advocacy community and the American public with information about the Institute's research priorities, opportunities, and successes. Last week at the DCLG meeting, centered on NCI's efforts to develop a series of initiatives to speed new treatments to patients, I spoke to the DCLG members about the necessity of developing a new, comprehensive national research cohort of cancer patients - based on the collection of data and tissue from every new cancer patient.

During a discussion session, DCLG members reported on their deliberations regarding the role advocates can play in a new era of cancer research. We discussed three key areas: The Cancer Genome Atlas (TCGA); electronic health records and information technology; and communicating new opportunities.

DCLG member Dr. Jeff Allen, executive director of Friends of Cancer Research, led the discussion of TCGA. The dual challenges for advocates, he argued, must be to communicate "early wins" of genomic research while at the same time pushing for "sustainable support" that continues long after economic stimulus funds are expended. The long-term goal will involve targeted therapies that have been the result of this special one-time funding opportunity for TCGA. One area in which advocates may play a particularly important role, Dr. Allen suggested, is in working with the community to make this type of complex science understandable, to help explain the specifics of what may be a multi-tiered informed-consent process and to support directed research. In the end, he urged NCI to continue its efforts to be transparent - from the availability of data, to the selection process for new tumor types to sequence, to clearly informing patients just what their tissue samples will be used for.

Next, Wendy Selig, vice president of external affairs and strategic alliances for the American Cancer Society Cancer Action Network, discussed efforts being made to gather a rich set of data on all cancer patients. From the patient's perspective it will be crucial to explain why electronic health records and data collection matter, how personal information will be protected, and the new knowledge these vast amounts of data will potentially elicit. Ms. Selig added that access to care will become even more significant in an era when clinicians regularly collect patient data and a pillar of healthcare reform must be to get everyone into the system.

Making health records electronically accessible must be a priority, if not a movement. The technologies exist, but they are not coordinated; the information is there, but accessibility isn't. NCI's cancer Biomedical Informatics Grid (caBIG) has helped us get a start, but we must push hard, with the help of the advocacy community, to continue to build out the system.

Finally, Susan Braun, executive director of Commonweal, talked about fostering a dialogue in the cancer community around the direction of cancer research. Ms. Braun suggested a need shift public vernacular around the words "prevention" and "cure," to "put them into a context of reality." She suggested speaking in terms of "risk reduction and stratification" - making clear our knowledge about personal and environmental risks of cancer. I noted that the relationship between environmental and somatic changes to our DNA is a tremendously important area, which NCI and other NIH Institutes are tackling. Moreover, this area is inspiration for a deeper study of cancer patterns internationally, working toward the reduction of region-specific risks that affect the United States and other nations.

Without a doubt, this meeting was the culmination of a long process and much planning. DCLG chair Gwen Darien, director of the American Association for Cancer Research Survivor and Patient Advocacy Program and vice chair Everett Dodson, a community health educator at the Lombardi Comprehensive Cancer Center at Georgetown University, deserve much credit for this outstanding meeting. DCLG members represent a variety of groups that support cancer research and can help NCI make the scientific case for the continuation and expansion of major initiatives. We have a story to tell, and advocates are marshaling their organizations to help tell it.

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Dear Director:
Having missed the last DCLG meeting do to a serious illness in my family, I was glad to see this excellent overview of the recent DCLG meeting in the Directors Notes. And the wonderful education preparation material that Office of Advocacy Relations (OAR) prepared for us in advance for the meeting.

I agree that using the term Risk Reduction over Prevention is more accurate. It is not to different from when a clinician provides a "Risk Ratio" for a person with possible coronary artery disease (CAD). The calculation may include a HDL and LDL lab result level, age, history, etc.

A person's "Personal Cancer Risk Reduction Ratio" (PCRRR) for different types of cancers may work and could very well become an educational tool educators could use in motivating people to focus in on implementing their own personal risk reduction activity. We talk about "Personalized Medicine" and what it means related to diagnostics and treatments. Expanding this to include a persons "Personalized Cancer Risk Reduction Ratio" by cancer type, may be a way to help empower folks to take action to help keep cancer away and reduce their risk.

By highlighting the mission and excellent work NCI does, Cancer Advocates can be independent Ambassador's for the NCI by going into local communities and industry and clinician trade meetings nationwide and help educate cancer patients, communities and clinicians too on the importance of gathering information through electronic health records (EHR) and quality specimen material with accurate history for furthering healthcare research and speeding up the delivery of enhanced cancer treatments, diagnostics and cancer risk reduction strategies.

Specimen quality with accurate history stored at quality compliant biorepositories is essential to enhance the quality and improved accuracy of outcomes for clinical trials. As independent Ambassadors for NCI and the cancer community at large, cancer advocates are an excellent way to communicate this message.

And as cancer advocates it is essential we continue to communicate in our communities, and at NCI, the importance of the enhanced need cancer patients have as they navigate the healthcare system to battle their own cancer. Consideration should be given to the development of community-based "Cancer Navigators" to help cancer patients better navigate the healthcare maze after they hear those words; "It's CANCER!"

Congratulations to NCI and groups such as AACR, ASC-CAN and OVAC for listening to and speaking out on behalf of the cancer patient and their family!