Welcome to NCRA’s
Strategic Alliances & Advocacy News
Recognizing NCRA’s work with its strategic partners requires timely communications with members, NCRA has established the e-brief to highlight key updates and news from its work with industry partners.
The content covered will be from NCRA’s formal liaisons to partner organizations and Adam Ebbin, NCRA’s Public Policy and Strategy Consultant. NCRA may also include information from its federal partners at the CDC and NCI on occasion.
If you have any questions or need additional information about issues outlined in this issue of the Strategic Alliances & Advocacy News, email policystaff@ncra-usa.org.
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High-Level Strategic Group (HLSG) and Mid-Level Tactical Group (MLTG)
NCRA's HLSG Liaison: Nadine Walker, MS, CTR
NCRA's MLTG Liaison: Jennie Jones, CTR, MSHI-HA, CHDA
The purpose of the HLSG and MLTG is to ensure high-level coordination among all cancer surveillance organizations regarding the development and implementation of significant changes in standards and procedures.
The groups collaborate with standard setters to closely monitor and review release and completion dates for v22 implementations and updates to help ensure harmonization between these updates and changes, so they are implemented in a timely fashion via a systematic process. The MLTG has already begun collecting information around changes planned for v23 to ensure any updates align with essential timelines.
Thanks to the many cancer surveillance organizations for your continued efforts in keeping the community updated to ensure the capture of high-quality data. Thanks to all of the diligent cancer registrars for your continued efforts in keeping up with changes and clarifications. We are all working toward a common goal of capturing high-quality data for utilization as the cornerstone of many crucial efforts in reducing the burden of cancer.
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National Accreditation Program for Breast Cancers (NAPBC)
NCRA’s NAPBC Liaison: Cynthia Boudreaux, LPN, CTR
NAPBC Board and Leadership continue to work on strategies that optimize the value of accreditation for facilities. These are just two of the latest task forces being developed to ensure these goals are realized.
Timeliness to Care Projects Task Force
Goal: to advance three timeliness to care projects/studies to identify best practices that can enhance the quality of care provided by NAPBC accredited centers.
Enhancing Breast Care Delivery in Rural and Safety Net Hospitals Task Force
Goal: to identify strategies to assist rural and safety net hospitals with improving the quality of breast care.
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North American Association of Central Cancer Registries (NAACCR)
NCRA's NAACCR Liaison: Heather Stabinsky, MS. Ed, CTR
Do you believe is been 50 years since the National Cancer Act of 1971 was signed into law? By signing this act, President Nixon granted the authority to federal and nonfederal programs to develop a National Cancer Program and provided funds to establish cancer research centers, local control programs and an international cancer research data bank.
NAACCR recalled the National Cancer Act of 1971 at the NAACCR Summer Forum which was held on a virtual platform on June 15-17, 2021. Forum sessions included a diverse selection of topics presented by representatives of national cancer research organizations and members from different states, territories, and regions of North America as well as international agencies. Concurrent sessions included such topics as, Challenges and Solutions in Cancer Registry Operations, Health Disparities, Cancer Surveillance, Denominators for Small Area Analysis, Challenges and Solutions in Cancer Registry Data Utilization, Pediatric Cancers, and International Perspectives. The Forum also held a memorial to honor and remember Dr. John Young for his life-long commitment and contribution to cancer surveillance and NAACCR. The memorial also included a moment remembering other colleagues that were lost this year.
NAACCR is collaborating with NCRA for the second year in a row, to publish a special edition of the Journal of Registry Management to be published December 2021. All accepted abstracts to the Summer Forum are eligible to submit a manuscript version to be considered for publication. Summer Forum Posters winners will automatically have the opportunity to publish their poster in this special edition.
NAACCR looks forward to seeing everyone together in Boise, Idaho in June 2022 for the next Annual Conference.
References and further reading on the National Cancer Act of 1971:
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Commission on Cancer; CSSP
CoC Operative Standards 5.3-5.8: Updates on Educational Resources
NCRA’s CSSP Liaison: Nadine Walker, MS, CTR
CoC Standards 5.7 and 5.8 Case Identification Guideline Documents for Registrars
The ACS Cancer Surgery Standards Program (CSSP) has developed guideline documents designed to help registrars at Commission on Cancer (CoC)-accredited programs identify and/or audit cases to track compliance with the CoC Standards 5.7 (Total Mesorectal Excision) and 5.8 (Pulmonary Resection). These documents are now available through the new Operative Standards Toolkit, an organized webpage with direct links to all existing educational materials on CoC Standards 5.3 through 5.8. Additional information on the implementation timeline and compliance information for CoC Standards 5.3 through 5.8 can be found on the Ratings/Compliance Information for CoC Operative Standards webpage.
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American Joint Commission on Cancer (AJCC)
NCRA’s AJCC Liaison: Vonetta Williams, CTR, PhD, MPH
The AJCC team released a paperback version of the AJCC Cancer Staging System Cervix Uteri Protocol (version 9) in April 2021 that was initially released as an eBook in October 2020. The paperback book can be purchased on Amazon for $9.99.
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Public Policy and Strategy
NCRA’s Public Policy and Strategy Consultant: Adam Ebbin
Biden Administration proposes new Health Research Fund
The Biden Administration is advancing a new health research proposal, modeled after the Defense Advanced Research Projects Agency (DARPA) dubbed "ARPA-H", the Advanced Research Projects Agency-Health to speed the development of health treatments, particularly focused on cancer, and diseases like Alzheimer's and diabetes. President Joe Biden has called for the creation of an Advanced Research Projects Agency-Health (ARPA-H) as a mechanism for realizing his goal of “ending cancer as we know it.” Although proposed to be housed at the NIH, ARPA-H is envisioned to fund research differently than typical NIH research. Science Magazine summarized the views of some ARPA-H advocates that that "too much NIH-funded research does not make it out of the lab because of a lack of funding for the high-risk work needed to develop a treatment to the point where it interests companies. Under the DARPA model, projects would not be vetted by peer reviewers, but instead, funding decisions would be made by program managers."
The One Voice Against Cancer (OVAC) coalition, of which NCRA is a member, believes that to be successful, ARPA-H must be designed and operated in a transparent and patient-centric manner that builds off of the existing research ecosystem rather than displacing it. The agency is based on the premise that the current research ecosystem in which National Institutes of Health (NIH) funds basic science, and private industry funds translation of that science into products used by patients, while generally successful, results in persistent innovation and translation gaps. These gaps occur because needed work either does not fit in the traditional NIH purview or the necessary economic returns for private industry do not exist. ARPA-H holds the potential to quickly bridge the gap between the lab and the patient with targeted innovative therapies while simultaneously benefiting from and bolstering the bedrock research being done at NIH and the National Cancer Institute (NCI).
NCRA was one of 22 organizations that participated in the One Voice Against Cancer (OVAC)'s annual grassroots lobby day in May on Capitol Hill. Stay tuned to the forthcoming summer Connection for details. We've begun planning for our own April 2022 "Walk on the Hill" in DC where members will have a chance to meet with congressional offices to share our priorities in conjunction with our annual conference. For those attending the conference virtually, we'll provide an easy way to email your senators and representative.
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