Priority Area 2: Standardization and Registry Development (S&RD)

Rationale:

Standardization and registry development continues to be a mission-critical role that must move forward so that central registries are adequately prepared to adapt rapidly and successfully to changing developments in cancer surveillance. Emerging technologies, genetic and clinical advances, survivorship issues, electronic medical records, and “Big Data” are transforming the way central cancer registries function. For these reasons, the S&RD priority area must continue to maintain its efforts to assure the highest quality data for central registries while seeking innovative strategies to develop the cancer registry of the future.

Goal 1: Prepare for the cancer surveillance system of the future—a system that is more timely, responsive, and adaptable to change.

Objective 1: Analyze how cancer surveillance systems will interface with electronic health data and continue to assess semantic interoperability issues.

Objective 2: Engage with and appraise national and international efforts regarding informatics initiatives, electronic health records, artificial intelligence, and other IT technologies as they relate to central cancer registries.

Objective 3: Identify, analyze, and assess emerging cancer surveillance data sources to assist registries with ensuing data storage, computing infrastructure, and operational needs.

Objective 4: Investigate and promote increased registry incorporation of informatics to optimize registry operations.

Goal 2: Establish consensus standards and best practices for the collection and processing of cancer and patient information.

Objective 1: Organize consensus-based standards volumes and implementation guidelines.

Objective 2: Develop methods to simplify the death clearance process to improve efficiency.

Objective 3: Enable the facilitation of automation of record consolidation by developing general principles and consolidation guidelines.

Objective 4: Evaluate recommendations of timeliness initiatives to identify commonalities and feasibility.

Objective 5: Collaborate with the Research and Data Use Steering Committee to develop best practices for interstate deduplication.

Objective 6: Collaborate with the Research and Data Use Steering Committee to develop minimum and targeted data sets.

Goal 3: Investigate and develop innovative uses of cancer registries by identifying emerging initiatives and new roles that bring value- added benefits to cancer surveillance, research, and control.

Objective 1: Investigate and recommend opportunities for cancer registries to improve cancer surveillance, research, and control (for example, Childhood Cancer Registry).

Objective 2: Investigate the process and feasibility of setting up and maintaining virtual population-based tumor banks.

Objective 3: Develop best practices for conducting linkages to enhance registries.

Priority Area 3: Research and Data Use

Rationale

The fundamental value of centralized cancer registries is the high-quality data that allows innovative research, reliable cancer surveillance and improved cancer control. The Research and Data Use Steering Committee plays a vital role in assuring promotion and access to registry data in a systematic and user-friendly way. Significant advances in technology and science offer new opportunities and challenges for cancer surveillance. Data analytics and “Big Data” are presenting new ways to analyze both structured and unstructured data to provide new insights and directions in our understanding of cancer. It is essential that NAACCR keeps pace with these developments by making certain that central registries are positioned to make the fullest possible contribution to future research in epidemiology, cancer prevention and control, and, in particular, clinical outcomes.

Goal 1: Increase the use of central cancer registry data.

 Objective 1: Assess the relevance and demonstrate the value of central cancer registries to the cancer control community, clinicians, researchers, and the public (in collaboration with Communications Priority Area).

Objective 2: Develop efficient processes to improve access to North American population-based cancer registry data.

Objective 3: Improve the research and data use capacity of NAACCR member registries and external researchers (in collaboration with Professional Development Priority Area).

Priority Area 5: Professional Development

Rationale:

The development and training of skilled CTRs, epidemiologists, IT specialists, and registry managers remains essential to the future of centralized registries. New technologies and advances in genetics and molecular biology are informing clinical and cancer control strategies. Informatics, analytics, and molecular epidemiology are combining to push for change in the way registries function. Personnel are being asked to do more with less, as budgets are cut and the complexity of work responsibilities increases. Enhanced training and professional development will remain an essential priority of NAACCR.

In addition, an aging workforce creates a demand for succession planning to establish a talented pool of future leaders for central registries. Programs to develop management, leadership, and strategic thinking proficiencies will grow. NAACCR needs to work collaboratively with other key agencies to address this serious concern.

Goal 1: Develop and implement strategies to recruit and retain personnel in central cancer registries by enhancing career opportunities for individuals with diverse skill sets.

Objective 1: Partner with other professional organizations (e.g., American Health Information Management Association, American Public Health Association, NCRA) to address recruitment and retention issues.

Objective 2: Establish collaborative approaches to make career opportunities more attractive to individuals with skill sets and expertise to build and implement the cancer registry of the future.

Objective 3: In collaboration with other steering committees, such as Standards and Registry Development and Research and Data Use, bring

top central registry staff together to brainstorm best practices for leadership, management, registry operations, epidemiology/statistics, information technology (IT), research support, and data security.

Objective 4: Collaborate with NCRA and other groups to address data quality from non-cancer registry/non-U.S. outsourcing firms.

Objective 5: Engage new members through the Member Ambassador Program to encourage involvement in NAACCR activities.

Goal 2: Develop a comprehensive multidisciplinary training program to ensure that NAACCR members possess the requisite skill sets to excel in the rapidly changing cancer surveillance environment.

Objective 1: Produce a training program that includes core competencies in the areas of leadership, management, registry operations, epidemiology/ statistics, IT, research support, and data security to prepare members for management positions and to provide a talented and reliable supply of future NAACCR leaders.

Objective 2: Coordinate an inter-registry mentorship program, with opportunities for registry staff to observe operations and best practices of highly successful registries.

Objective 3: Support and guide university-level curriculum for central cancer registries, along with other interested organizations.