Sound the Trumpets! The NAACCR Annual Conference is going to New Orleans, Louisiana

Registration is Open!

Join us Thursday, June 20-22, 2023

New Orleans, Louisiana

See the Conference Website naaccr23nola.org for information on:

• Exhibits/Sponsorships
• Schedule/Agenda
• Travel information
• Hotel information
• Registration

 

 

Check back frequently; new information is added as it becomes available.

If you have any questions, please contact the NAACCR Office. (217)698-0800 or [email protected]

 

 

 

 

The NAACCR Board of Directors is seeking nominations for the Constance L. Percy and Calum Muir Awards

In March, the NAACCR Board of Directors considers nominations for two of the most prestigious awards in the cancer surveillance community, The Calum Muir Award, and the Constance L. Percy Award. These awards, described below, will be presented at the NAACCR Annual Conference in New Orleans in June. Please take the time and nominate a NAACCR member who has demonstrated leadership and commitment to cancer surveillance.

Nomination Deadline: March 1, 2023

The Calum Muir Award

The purpose of the Calum Muir Award is to honor someone who has made long-term, substantive contributions in cancer registration. Preference is for the recipient to be an active member of NAACCR with a long-term commitment to the organization. The intent is that it not be a posthumous award. The award will be bestowed each year at the NAACCR Annual Conference to a recipient selected by the Board of Directors.

The Constance L. Percy Award for Distinguished Service

The purpose of the Constance L. Percy Award for Distinguished Service is to recognize an individual who contributed exceptional volunteer service to NAACCR during the past 12 months, or sustained current and long-term contributions to the organization. The award may be bestowed once each year, usually at the NAACCR Annual Conference, to a recipient selected by the Board of Directors. More than one award may be given in any year. No limit is placed on the number of times an individual may be recognized by a Constance L. Percy Award for Distinguished Service

 

Past Award Recipients

Please include information about why you think your candidate should be considered for the award. This information will be distributed to the Board and serve as the basis of voting. Nominations should be submitted in writing to [email protected] by MARCH 1. Thank you for your participation.

 

 

 

Authors:

Cancer Registry Process Mapping Task Force, a task force of the Canadian Council of Cancer Registries

 

Introduction

Canadian cancer surveillance consists of 13 provincial and territorial population-based cancer registries (PTCR) that collect information on all reportable tumours among Canadian residents according to Canadian and international coding standards. Although PTCR practice may differ across the provinces, most of the information collected is ascertained from provincial/territorial level health information systems attributed to universal health care systems in Canada^[1].

Canadian cancer registries typically report over 90% of tumours as pathology confirmed. To facilitate data quality, timeliness, and complete ascertainment of pathology confirmed cases, improvements in electronic reporting from pathology laboratories continue in many jurisdictions in Canada and the United States.

Some PTCRs rely on manual processes including but not limited to, filtering electronic reports for reportability status, storing and processing massive volumes of data, and maintaining these systems. Although some advances have been made, we are far from fully realizing the benefits of real-time electronic reporting of cancer pathology. NAACCR, along with cancer registry experts and students from Rutgers University, recently published work in this area titled: A Six Sigma Lean Green Belt Analysis of Electronic Pathology Reporting in Central Cancer Registries^[2].

Canadian cancer registries are reporting common experiences. Data volume and complexity of data are increasing, human resource capacity is limited, and there is increased pressure to improve on data timeliness. In response to these challenges, and in light of advances in electronic pathology reporting, the Canadian Council of Cancer Registries (CCCR) created a task force (Cancer Registry Data Process Mapping Task Force) to lead an environmental scan of electronic reporting of pathology information across PTCRs. This effort was designed to facilitate additional discussions among PTCRs, not necessarily providing a written compendium of solutions. The overarching objectives of this work were to:

• Enable comparison of pathology data sources, systems, processes and tools across PTCRs.
• Facilitate the capacity to:
  • leverage systems, processes, tools and knowledge from other PTCRs;
  • identify and compare strengths, weaknesses and pain points;
  • identify opportunities for improvements, enhance collaboration and share advancements.
• Prove the opportunity to identify challenges in ascertaining, integrating and consolidating pathology information, and contribute towards Pan-Canadian solutions, registry practices and data standards.

Engagement with PTCRs

The environmental scan is currently underway and will be conducted in three phases, corresponding to the different stages of cancer registry operations. Under each phase, a questionnaire was developed by the Task Force in collaboration with cancer registry experts across Canada to gather key information about electronic reporting of pathology. The phases and topic areas were as follows:

 

 

 

 

 

 

 

 

 

In partnership with Statistics Canada, follow up interviews were held with PTCR registry teams to discuss responses to the questionnaire and develop key project outputs: (1) a data metrics table and (2) cancer registry data process maps. The data metrics table compares high-level information on systems, processes, and data that characterize electronic reporting of pathology across PTCRs. The cancer registry process maps (i.e., flow diagrams as shown below) incorporate information on systems and processes, areas that rely on manual work, pain points, challenges, and opportunities.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Early Findings and Key Messages

To date, the Task Force in partnership with Statistics Canada, completed Phase 1, and was able to engage nearly all PTCRs. Cancer registry process maps illustrating where we rely on manual work, common challenges, and opportunities, were shared with all PTCRs through the CCCR Web Portal. Additionally, a data metrics table was produced summarizing electronic reporting across all Canadian cancer registries. At this time, we are excited to share early findings of our work:

• Many PTCRs are in early phases of transitioning or recently transitioned to electronic reporting. In most cases, electronic reporting includes complete coverage of pathology information in the province.
• Even though all registries have established electronic reporting, the way those reports are fed into the system, the format of the reports, and technical solutions to process the information are significantly different.
• Many PTCRs are looking to explore data science in order to deal with the demands associated with volumes, timeliness, and human resource (registrar) shortages, but this is not traditionally an area within the cancer registries.
• Some registries are actively collaborating with data science teams in using natural language processing and machine learning to support operations.

The current work provides some early examples of successes, but the exercise was designed as proof of concept work; it provides limited direction on standards and methods for registrar practice. The second phase of this initiative is underway and will focus on the processing, consolidation, and integration of pathology data into the cancer registry dataset.

We want to acknowledge the great work done by our NAACCR and US colleagues in this space as reported in the A Six Sigma Lean Green Belt Analysis of Electronic Pathology Reporting in Central Cancer Registries^[2]. We are looking forward to engaging with US partners to explore new opportunities that arise from electronic reporting and harnessing the power of data science to modernize cancer registry practice.

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^[1] NAACCR Editorial Review Board. Central Cancer Registries in Canada: Strong Integration with Canadian Health Information Systems and a Single Standard Setter. NAACCR Narrative [Internet]. 2021  Sep  [cited 2023 Jan 10]. Available from: https://narrative.naaccr.org/article/central-cancer-registries-in-canada/

^[2] North American Association of Central Cancer Registries. A Six Sigma Lean Green Belt Analysis of Electronic Pathology Reporting in Central Cancer Registries. [Internet]. IL (US): NAACCR; 2021 [cited 2023 Jan 10]. Available from: https://20tqtx36s1la18rvn82wcmpn-wpengine.netdna-ssl.com/wp-content/uploads/2021/03/A-Six-Sigma-Lean-Green-Belt-Analysis-of-Electronic-Pathology-Reporting-in-Central-Cancer-Registries.pdf

 

 

 

Heather Zimmerman and the Data Security & Confidentiality Workgroup

 

Over the last 2 years the Data Security and Confidentiality Workgroup has produced several resource documents to assist the cancer surveillance community with navigating this important and sometimes confusing area. You can find these valuable resources, along with older but still relevant materials, online at https://www.naaccr.org/data-security-confidentiality-issues/ .

We would like to highlight some of these resources:

National Death Index Fact Sheet

This factsheet covers the key facts central registries need to know about linking with the National Death Index and how the data can be utilized. It also covers limitations and requirements association with the use of NDI data.

Indemnification Primer

We’ve all seen data use agreements that contain an indemnification clause, but do we really know what it means? This primer covers indemnification as a legal term of art and aims to help central registries understand why it is often included and sometimes negotiated out of DUAs.

HIPAA Resources for Cancer Registries

HIPAA and its regulations including the Privacy Rule rank among the most commonly cited laws dictating how individually identifying health and personal information must be protected. But how should central cancer registries interpret HIPAA regulations? How do provisions for public health surveillance and research activities apply to registries and their operations? This handy guide explains how HIPPA applies to central registries.

Requests from or on behalf of Patients for Individual-Level Information from Central Cancer Registries

Are central cancer registries required to release individual-level information directly to patients or their family? Is it even a good idea to release this kind of information? These guidelines can help central registries understand what laws may apply to these types of requests and to determine whether to honor such requests.

Data Destruction Primer

Data Use Agreements almost always include a requirement to destroy the data once the project is complete or the DUA expires but what does data destruction even mean? This primer covers how to properly destroy data and how to ensure that your data is destroyed through good planning.

Multi-Factor Authentication Factsheet

Most of us have had to switch to multi-factor authentication in both our personal and professional accounts but is the hassle really worth it?? This factsheet covers what MFA is and why it is important.

Data Encryption and Hashing Primer

Protecting data from unauthorized access is the primary goal of data security, and encryption and hashing are tools we hear about all the time, but do we actually understand what they are and how they should be used? This primer provides a basic description of encryption and hashing to help central registry staff understand when they should and should not be used.

The Data Security and Confidentiality Workgroup is currently working on even more resources so keep an eye out for their release in the coming months!

 

 

 

Winny Roshala, BA, CTR
NAACCR President
[email protected]

 

 

I hope you all had a wonderful holiday season and that you can look back upon 2022 as a year filled with new challenges, but also many unexpected opportunities.  As we all prepared our data files for the annual Calls for Data, the challenges from the impact of the pandemic came into play and establishing fair expected case counts completeness percentage for 2020 cases was no easy feat.  Standard setting agencies worked to come up with fair and reasonable estimates for these unprecedented circumstances.  We know it will take years to fully determine the impact of the pandemic on cancer surveillance efforts.  We continue to forge ahead, despite the challenges.  Early indications of 2021 data reflects a slow increase of cancer cases. Again, it may take several years to fully assess the impact of the pandemic on cancer surveillance including incidence and stage at diagnosis, impacting outcomes. Only time will tell.

The NAACCR Board and Steering Committee Chairs, in collaboration with the NAACCR staff have been working diligently to develop a Strategic Initiative Priorities roadmap for NAACCR. You will hear more about this in the next edition of the NAACCR Narrative.

I’m so excited that the 2023 NAACCR Annual Conference will be held in-person again in historic and vibrant New Orleans, LA! The NAACCR Program Committee has been working hard to provide a diverse and dynamic program agenda, to inspire attendees and promote networking and collaboration in familiar as well as new, innovative environments! Birds of a Feather will also be making a return flight to New Orleans, LA (aka NOLA)!  Look for more details regarding NAACCR in NOLA!

I also want to take a moment to thank the members of the NAACCR Nominating Committee, consisting of Devbani Raha, (Nova Scotia) Chair, April Austin (NY) and Heather Stabinsky (NJ). The committee did a tremendous job putting together a full slate of candidates for the office of Treasurer, 3 Representative- at-Large positions and 3 Nominating Committee member positions. Kudos to them all for a job very well done!

I also want to encourage you all to consider nominating a colleague for the Calum Muir Award or the Constance Percy Award.  There are so many colleagues who have served as leaders and mentors in the cancer surveillance community.  Let’s honor those who are so deserving of this recognition!

Wishing you all a bright New Year, filled with good health and many new exciting opportunities and adventures!

 

Please contact me should you have any questions, comments or suggestions at [email protected]

NEW FEATURE! Spotlight on Registries

Spotlight on Registries is a relatively new feature for the Narrative Newsletter and presents a series of articles that highlights a registry’s special activities or achievements. This Edition spotlights the Michigan Cancer Surveillance Program’s 2021 NPCR Success Story, which describes their successful linkage between their registry database and the LexisNexis database in order to update several demographic data items.  Georgetta “Jetty” Alverson from the Michigan Cancer Registry and lead-author on the Success Story spoke with the Narrative recently about their experience.

 

To see the original 2021 NPCR Success Story, click here.

 

NAACCR Narrative Interviews Jetty Alverson, Michigan Cancer Surveillance System. Some responses were edited for clarity.

NAACCR Narrative (NN): What do you think was your greatest challenge in implementing this new procedure for updating SSN and related patient demographics?

Ms. Alverson:

• The amount of time involved to review the LexisNexis linkage results and determine which instances of the results should be updated in the registry database.
• Updating the patient’s missing SSN with a known SSN was not as labor-intensive as updating the patient’s name and/or demographics.
• Manual review of the file results for best patient information for name and demographics was time consuming. Typos could easily be spotted, and scripts were written for auto-updating the registry database. Manual review was needed when there was a difference in first and/or last name. If the patient was alive in the registry database but LexisNexis indicated the patient was now deceased, the patient’s name was updated based on the LexisNexis results.
• Middle name was updated with the LexisNexis linkage result if the patient’s middle name was missing and/or if middle initial was reported instead of the patient’s middle name.
• Date of Last Contact was updated when the patient’s vital status was alive in the registry database but identified as deceased in the LexisNexis results.

NN: What do you think was your greatest success in this implementation?

Ms. Alverson:

• MCSP saw an increase in the annual number of cases reported to the registry with missing SSN and/or invalid/masked SSN reported by Michigan reporting facilities. This is an issue that goes beyond the edits that need to be performed on a regular basis. Therefore, we needed to identify changes in facility reporting of SSN.
• MCSP’s state-specific reporting requirement for reporting the patient’s full SSN requires that facility follow-back be conducted in attempt to obtain it if it is not readily available.
  • The registrar/facility should determine if the facility collects the patient’s SSN and if so, if the reason the registrar does not have access to the patient’s SSN is due to a user access rights issue. If user access is needed, the registrar should contact the applicable facility admin/IT staff to request user access.
  • If the facility no longer collects the patient’s SSN, it is recommended that the registrar (facility cancer registry) communicate this state-specific reporting requirement to the applicable administrative staff at the facility.
  • If the patient’s SSN is not collected or not available, facility follow-back with applicable physician(s) is required by MCSP.
• To sustain success, MCSP created a new state-specific data item, MI100 Reason SocSoc Unknown beginning with v22 (diagnosis year 2022 cases and forward). This state-specific data item serves to act as a reminder to facilities that MCSP requires the patient’s SSN and of MCSP’s state-specific reporting requirement that facility follow-back be conducted in attempts to collect the patient’s SSN. Use of this state-specific data item is required (2022 cases and forward) if the patient’s SSN is reported as unknown.

NN: Do you have anything else you would like to share with the NAACCR community as part of this article on your Success Story experience?

Ms. Alverson: MCSP cancer registry staff has been using LexisNexis on a regular basis for approved research studies/linkages and patient look-up for SSN when reported as unknown, invalid, or masked. Regular use of LexisNexis for missing SSN is what prompted the quality assurance review to identify the reason for the increase in the number of cases with missing SSN and for registry batch look-up of cases in the registry database to determine if the SSN could be identified.

 

 

Are you the top dog, the cool cat, the big bird??

 

 

 

 

 

 

 

 

 

 

We need two moderators for our Birds of a Feather (BOF) session at the Annual Conference. BOF has become a NAACCR tradition of sharing ideas and tips with other members. This year’s theme will be “Bouncing Back!” Come and share your ideas about bouncing back from COVID-19 and new data requirements. Have you always wanted to be the one in control of the mic and handing out the “fabulous prizes”?  Now is your chance! If you are interested in being a moderator, send your name to Monica [email protected] with a brief statement about why this would be your jam!

 

 

Angela Martin, CTR
NAACCR Trainer/Project Coordinator
[email protected]

 

 

Upcoming Webinar Presentations

Feb 2023
02/21/2023	NAACCR CTR Exam Prep and Review Webinar Series Session 3
02/28/2023	NAACCR CTR Exam Prep and Review Webinar Series Session 4
Mar 2023
03/02/2023	NAACCR Webinar Series: Abstracting and Coding Boot Camp 2023
03/06/2023	NAACCR Talk: Match*Pro Tumor-Level Deduplication Training for NAACCR Certification
03/07/2023	NAACCR CTR Exam Prep and Review Webinar Series Session 5
03/14/2023	NAACCR CTR Exam Prep and Review Webinar Series Session 6
03/21/2023	NAACCR CTR Exam Prep and Review Webinar Series Session 7
03/28/2023	NAACCR CTR Exam Prep and Review Webinar Series Session 8
April 2023
04/06/2023	NAACCR Webinar Series: Prostate 2023
May 2023
05/04/2023	NAACCR Webinar Series: Lower GI 2023 Part 1

 

For more information about NAACCR education and training opportunities, or to register online, go to the Education and Training site https://education.naaccr.org/upcomingevents or contact Angela Martin ([email protected]).

Fernanda Silva Michels, MSc, PhD, CTR
Program Manager of Data Quality and Integration
[email protected]

 

 

2022 was a year of exciting growth and development for the National Childhood Cancer Registry! As we kick off the new year, the NCCR project staff at NCI and NAACCR would like to highlight just a few of the many accomplishments brought about by the collective efforts of everyone involved in making the NCCR a successful reality.

This year marked the first coordinated NCCR call for data, with 24 central cancer registries submitting full NCCR files as part of the annual SEER and NAACCR calls for data. The NCCR now covers more than two-thirds of all U.S. children, adolescents, and young adults ages 0-39, with plans to expand further in 2023.

We also saw the completion of the first linkage between the NCCR and the Virtual Pooled Registry (VPR), matching the NCCR patients (age 0-39) against the VPR files (all ages) from NCCR registries plus nine VPR-only registries. Subsequent cancers will be added to the NCCR database to form a complete picture of the patient’s cancer history. NAACCR’s Interstate Case Ownership Task force (a subgroup of the NAACCR Standardization a Registry Development Steering Committee) has been developing standard rules for addressing duplicate cases between states, and we plan to test these rules using duplicate cancers identified through the NCCR-VPR match. This process will observe patient confidentiality protocols and will require the involvement of the registries. More information will be provided once the cancer matching has been completed.

Great strides have been made in developing mechanisms to make data available to end users through several avenues, including an NCCR version of SEER*Stat and an NCI cloud-based data platform. The NCCR Data Platform will enable researchers to perform cohort discovery and to explore data available at an aggre­gate level. The platform will also support requesting access to patient-level data through a robust au­thentication, authorization and review process including, where necessary, IRB review and approval.

HemOnc.Org is a one-stop shop for detailed information about oncology treatment regimens with links to relevant literature for evidence-based therapy. Practicing clinicians from various oncology specialties are the editors for the content. While HemOnc.Org is not an accredited guidelines entity, they do offer valuable information on trial and medication abbreviations and names, dosing, evidence, and therapy options for patients, clinicians, pharmacists, and researchers. Until recently, pediatric regimens and their evidence were not well documented. SEER and the NCCR have funded a team of pediatric oncologists to better describe pediatric oncology therapies, add missing details to existing regimens, add missing guideline-recommended regimens and protocols, and perform landscape analysis for missing historic regimens and protocols. The HemOnc.Org team has re-organized information to make it easier to find pediatric oncology regimens by cancer, created new pages for different cancers, and added more detail about regimens. https://hemonc.org/wiki/Main_Page#peds

The Pediatric Proton and Photon Consortium Registry (PPCR) linkage project enabled a linkage between NCCR registries and the PPCR for eventual deposition into the NCCR and to identify patients who live in the US and are treated with radiotherapy at PPCR sites (around 2,700 patients treated by approximately 20 PPCR sites). The patient-level portion of the linkage is complete, with additional work ongoing into the new year. Look for more information and linkage results later this year.

The NCCR is envisioned as a connected data infrastructure to enable sharing of childhood cancer data, not just from central registries, but from myriad data sources. Twelve NCI-designated Cancer Centers were awarded supplemental NCI funds to aggregate, integrate, and submit existing data beyond the traditional cancer abstract, with the goal of expanding that infrastructure and ultimately supporting improved understanding of childhood cancer. In 2022, nine of the 12 NCI-designated Cancer Centers completed their data submissions to the NCCR.

Members of the NCCR Data Quality and Metadata Working Groups collaborated with NCI on a structured approach to developing new Site-Specific Data Items (SSDIs) for generating pediatric cancer stage according to the Toronto Staging Guidelines. The recommended SSDIs have been collated into one document titled “Implementation Guide for Toronto Staging.” The proposed new data items are based directly on Toronto Staging, and many are already collected by CTRs at pediatric facilities, but in a non-standardized way. Field test has been happening in the Kentucky Cancer Registry, and the SSDIs have been proposed for implementation in 2024.

NCCR*Explorer, the interactive web application for statistics based on NCCR data that was first launched in 2021, received some significant updates in 2022:

• A new feature was added to the Recent Trends graph for Incidence statistics. An information panel can now be displayed next to the graph that shows the Annual Percent Change (APC) estimates for the trend lines shown on the graph. To show the APCs, check the ‘View APC’ checkbox located above the graph.
• Data update to the NCCR*Explorer application including incidence and survival estimates based on North American Association of Central Cancer Registries (NAACCR) and Surveillance, Epidemiology, and End Results (SEER) Program registry submissions through diagnosis year 2019.
• The dataset used for this release represents 69% of the U.S. population and includes the following 24 NCCR cancer registries: California (3 registries: Greater Bay, Greater California, Los Angeles), Connecticut, Florida, Georgia, Hawaii, Idaho, Illinois, Iowa, Kentucky, Louisiana, Massachusetts, Michigan, New Jersey, New Mexico, New York, Ohio, Pennsylvania, Seattle (Puget Sound), Tennessee, Texas, Utah, Wisconsin.

And finally, the NCCR is drawing international attention, with presentations at the UICC World Cancer Congress, in Geneva, Switzerland, and at the IACR 2022 Virtual Conference.

We wish to extend a heartfelt thank you to all those who have worked so diligently to make 2022 a success for the NCCR, and we look forward to working with you in the coming year as we continue to realize the full potential of this innovative initiative!