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April 2017
    Vol 6 Issue 1
From the Editor  
 
Happy National Cancer Registrars Week! We celebrate each of you for your dedication and the hard work you do: whether it is finding all the data elements of a patient's diagnosis, staging, treatment and follow-up and putting them together to make a complete abstract, or the myriad of different work you do at a setting such as a regional registry. The theme for this year's NCRW, "Putting the Pieces Together", couldn't be more appropriate for what we all do. We hope you each can take some time this week to fully appreciate the value that you bring to your work. Be proud of your contributions to cancer surveillance and ultimately to the patient!

We start this issue with an introduction of a new staff member at CRGC. Dr. Robert McLaughlin joined CRGC as Special Programs Advisor in December 2016. In this issue, he describes recent research on cancer survivorship and insurance coverage in California counties before the Affordable Care Act.

Winny Roshala, CRGC Data Quality Director, reminds us about the CCR Network Reporting Option available to submit a single, consolidated abstract for any reporting facility within a CCR approved Single Abstract from a Network Reporting Facility.

And Dr. Rosemary Cress, CRGC Research Program Director, shares results from our recent submission to the North American Association of Central Cancer Registries (NAACCR) Call for Data. In her article, Dr. Cress gives a brief description of how this data is used and some interesting findings in our CRGC data.

We hope you find these articles interesting and informative. We wish you the very best - especially during this week that is dedicated to you! As always, thanks for all you do to provide accurate, timely and complete data.

Mignon
New Staff Member Joins CRGC

Robert McLaughlin, JD, PhD, joined the Cancer Registry of Greater California as Special Programs Advisor in December of 2016, bringing experience in research administration and bioethics.  Having served as Registered In-House Counsel for the Cancer Prevention Institute of California which operates the Greater Bay Area Cancer Registry, he has expertise in human subjects protection and the application of US federal regulations and California law to research studies that involve use of cancer registry data. 

He has previously administered a compliance program for both a regional registry and its reporting facilities, and led training and oversight programs in conflicts of interest, business ethics, and confidentiality. Dr. McLaughlin will provide support in these areas to CRGC with particular attention to HIPAA business associate agreements and use of HIPAA authorizations and waivers of authorization for specimen acquisition. 

His efforts will ensure alignment of data collection, use, and dissemination procedures with privacy and confidentiality requirements, and he will contribute to the integration of registry operations across state-designated cancer registries in California. His recent scholarly efforts include two co-authored papers, "The Vulnerability of Immigrants in Research: Enhancing Protocol Development and Ethics Review" published in the Journal of Academic Ethics, and "'Getting angry with honest people': The illicit market for immigrant 'papers' in Cape Town, South Africa."  Between 2013 and 2016, Dr. McLaughlin established an office of research integrity at the University of Cape Town, the first office of its type among South Africa's research-intensive universities.
Green Light: A Correlation of Cancer Survivorship and Insurance Coverage in California Counties
Robert McLaughlin, JD, PhD
Special Programs Advisor, CRGC

With healthcare and access to health insurance again garnering intense political attention in Congress across the country, and in California, we took a look at California cancer data to see if they command value for informing an evidence-based approach to policy making. Our poster, "Green Light: A Correlation of Cancer Survivorship and Insurance Coverage in California Counties before the Affordable Care Act" summarizes our effort. 

The poster contains a compilation of rates for common cancers in California, cumulative for years 2010-2014, and organized into two sets. The first set pertains to counties described in Kaiser's recent 2015 Fact Sheet on rates of non-elderly uninsured (pre-Affordable Care Act, 2009-2013) at a level of >30% uninsured. The second set pertains counties with uninsured rates at a level of <15%. The data, represented in colored signals, pertain to 36 month survivorship rates, post diagnosis, for five cancer types: breast, prostate, lung and bronchus, colon and rectum, and melanoma. For each cancer type in each county, a green signal means that the rate is better than the state average, a red signal means the rate is worse, and yellow signal means that the rate falls within the 95% confidence range of the state average. 

Comparison of these rates with updated, post-Affordable Care Act rates, will require additional time as the relevant data are presently being compiled for analysis.  Nevertheless, the graphics show a compelling correlation of current significance: population-based survivorship rates are significantly better in communities with high rates of insurance coverage, and worse in communities with lower rates of insurance coverage. While survivorship is a complex and important topic in cancer surveillance, and our scientific colleagues may readily point to many confounding variables, such as poverty, and factors that influence the distribution of rates represented in the "Green Light" poster, the broad pattern in these graphics indicates a core policy point. Insurance matters. Pursuit of the maximum accessibility and affordability of health insurance will contribute to cancer survival in California in a demonstrable and quantifiable way.


--With thanks and acknowledgements for assistance and insights to Danielle Rodriguez, Marta Induni, and Rosemary Cress; any error or omission is mine alone.
Single Abstract Reporting by Network Reporting Facilities
Winny Roshala, BA, CTR
Data Quality Control Director, CRGC
 
This is a reminder that if your facility is part of a healthcare network, sharing a single unified patient medical record, wherein each facility in the network has equal access to all the components of the medical record, you may be eligible to report as a Network Reporting Facility. Network Reporting Facilities submit a single abstract per tumor for a patient seen at multiple facilities within the network. The impact of submitting these cases as a single abstract reduces the work effort on the hospital registrar, as the case is abstracted and submitted once with data from all reporting facilities within the network. The regional registry also benefits from this, since these cases do not need to be consolidated and the case will only be visually edited once. The process for both the hospital registry staff and the regional registry staff is streamlined, more efficient and timely.  
If your institutions qualify and meet the requirements as a network reporting facility, a request form must be submitted to the regional registry, identifying the reporting facilities involved in the network. Signatures from representatives from all reporting facilities are required. Once approved and designated by the California Cancer Registry (CCR) as a Network Reporting Facility, a single abstract can be submitted for a patient seen at multiple facilities within the network. 

The Single Abstract Reporting Request form, guidelines for network reporting facilities submitting a single abstract, along with a list of current approved Network Reporting Facilities can be found on the CCR web site. Click here to see CCR Website

CRGC currently has 5 Network Reporting Facilities, involving 15 reporting facilities. We encourage  registrars to review the qualifications and requirements for reporting as a Network, as it could be a viable option for your reporting facility!  
NAACCR Call for Data 
Rosemary Cress, DrPH
Research Program Director, CRGC

The North American Association for Central Cancer Registries (NAACCR) serves as an umbrella organization for cancer registration in the United States and Canada.  NAACCR leads development of uniform data standards and provides registrar training and certification for central cancer registries.  In addition, NAACCR encourages use of registry data for cancer surveillance, cancer control and epidemiologic research.   De-identified data are submitted by member registries who meet NAACCR standards through the annual call for data.  Data from all registries are combined into analytic files, and used to create Cancer Incidence in North America (CINA), a statistical publication.
 
Data collected by CRGC has always been included as part of the CCR statewide NAACCR submission, but this year, for the first time, CRGC submitted its own file at the request of NAACCR.  The file included 483,986 records with de-identified information on residents of the CRGC catchment area diagnosed with cancer between 2010 and 2014.   The information submitted by CRGC will be included in the next CINA publication.  
 
NAACCR provided CRGC with an extensive analysis of our own data including distribution of cases by gender, race, site and stage at diagnosis, along with charts indicating how incidence rates in the CRGC area compare to national statistics.  For example, incidence of prostate cancer for men in the CRGC region is similar to incidence across all registries combined, but incidence of both lung cancer and colorectal cancer appears to be somewhat lower than incidence across most other registries. This information provided by NAACCR will be a valuable resource for CRGC epidemiologists.

Data submitted to NAACCR also are included in the Annual Report to the Nation on the Status of Cancer, a publication produced in collaboration with other national cancer surveillance organizations including the American Cancer Society and the National Cancer Institute.  The most recent Report to the Nation was released this week and will be published in the Journal of the National Cancer Institute.  The report can be accessed online at: https://academic.oup.com/jnci/article-lookup/doi/10.1093/jnci/djx030

In addition to publications, data submitted by central cancer registries to NAACCR are made available through CINA+, an online query system, and through CINA Deluxe, a data file for researchers.   Researchers who wish to analyze these files must be NAACCR members and must have their projects approved by NAACCR registries.
News From Desert Sierra Cancer Surveillance Program 

The DSCSP - Region 5 staff extends their appreciation to all of our regional registrars in their continuous efforts to send timely quality data for their facilities. We appreciate your response to our additional requests for information for quality control studies and audits throughout the year. The DSCSP Education Program will be held on May 3, 2017 at the Wong Kerlee Conference Center - Loma Linda University Medical Center. The program agenda will be distributed in mid-April which will feature Donna Hanson, CTR, Auditor/Training Coordinator - CCR, Dan Curran, MS, CTR, Special Projects Manager, C/Net Solutions, and John Morgan, DrPH with research collaborators.

Happy NCRW to everyone!
Cancer Registrar Feedback
If you have questions, comments, or suggestions for Chats contact Mignon Dryden at [email protected].
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