We are coming up on the racing season and we’ve discussed some event participation. Just wanted to let you know that Angela Childs has agreed to act as your Cap’n if you’d like to participate in the Komen Event. The link to the Komen event is:
NCRA was an incredible experience. The national and local coordinators did an excellent job with topics, speakers and site management. Presenters speaking to some very exciting topics on the linking of quality measures to Medicare reimbursement under the Affordable Healthcare Act (AHCA), the American Taxpayer Relief Act (ATRA), Health Information Technology and Economic and Clinical Health Act (HITECH) and the implementation of ICD 10M. As new provisions of these laws roll out over 2013 and 2014 you will be interested to know I think how this impacts cancer registries. Under these acts the model of fee for service is being replaced by fee for performance as Medicare reimbursement will be tied to meeting specified quality measures. Meaningful use of the electronic health record to improve quality of care was discussed at length. Reporting cancer cases to the state cancer registry is one of the menu options for compliance by eligible providers. Participating in the Rapid Quality Reporting System through the Commission on Cancer (CoC) accreditation process has been recognized by the Centers for Medicare/Medicaid Services (CMS) as meeting one of the quality measures for hospitals. RQRS is only available to CoC approved hospitals. The Hospital Inpatient Quality Reporting (HOQR) mandated by Medicare in 2003 and the Hospital Outpatient Quality Reporting (HOQR) mandated in 2006 reduces reimbursement to hospitals that do not report compliance with quality measures (57 measures). The Centers for Medicare/Medicaid Services (CMS) is currently testing oncology quality measures with 11 hospitals nationwide. As part of this project CMS has contracted with the CoC to provide performance measure data (CP3R) for these pilot hospitals. The CoC has submitted five new quality measures to the National Quality Forum for endorsement. The quality measures for Standards 4.4 and 4.5 will be expanded as well as existing measures enhanced. The next measure up for consideration is the number of mediastinal lymph nodes taken in a staging mediastinoscopy for lung cancer cases. A new version of the CoC program standards manual is due out in July 2013.
How will this come together and how will it affect your registry? Truthfully, I don’t think the process is completely defined. There are a variety of options for eligible providers and eligible hospitals to meet quality measures. These measures must necessarily have some flexibility to their structure since not all hospitals provide the same clinical services or have the same patient mix or clinical needs. For hospitals who have a significant cancer population though, it is not a stretch to say that administrators are biased to using existing data sources rather than inventing new ones. The use of clinical registries to document outcomes that affect reimbursement may put new focus on the cancer registry. In light of CMS already recognizing participation in RQRS as a qualifying performance measure, those hospitals already approved by the CoC may be better positioned to document compliance with quality of care and improve their reimbursement. In addition, the CMS is aware of the quality measures already in place in approved hospitals and publication of that data is part of the pilot project underway. The emphasis on measurable quality outcomes may spur a more extensive use of registry data and build relationships with other departments. The cancer registry as an isolated data enclave may be going the way of the dinosaur. How is your registry positioned for this transition? Do you know your data? Do you trust it? Quality and completeness have always been important, they are essential now. What can you do to be ready to promote the administrative and clinical applications of the registry data? What are your thoughts on the benefits and challenges to a more “meaningful use” of registry data?
Have you ever heard anyone say they want to be a “Cancer Registrar” when they grow up? Well I have not. The usual response when someone asks what you do for a living is “I have never heard of that field before”. As most of us in the field did not want to “grow up” to be a Cancer Registrar and stumbled into the position one way or another, it is difficult to promote a field that is not widely known or on any lists of college programs for students to think about.
For those of us in the field of course, we talk about it and try to recruit anyone that seems remotely interested. However, the conversation usually ends there because moving to the next step is where we find the stumbling blocks. While there are educational avenues to obtain a degree in Cancer Registry they are mainly on line, self taught and with little to no mentoring. A student is required to have 160 hours of onsite training but as registrars know there are not 160 hours in anyone’s schedule to give up to mentor, train or even look at a student. Not only is there the time issue but there is the cooperation of hospital administration to agree to let the student in the door, having space for a student to work and then finding a schedule that works for the student and the mentor. Once all that is accomplished how do you squeeze everything a new registrar needs to know that is not in any book into 160 hours??
With changes in the standards every year and what seems like a million data fields that are collected, education is key to keeping a student from running toward the door and shaping them into a well rounded new registrar that can benefit a program from day one. The quote “it takes a village to raise a child” can also apply to the training of a new registrar as it takes a community to raise a well rounded Cancer Registrar.
With cancer programs expanding all over the city and no one to recruit, we in the registrar community need to mentor fledgling registrars, promote the field and find ways to work together to raise the next generation of registrars. If you don’t have 160 hours do you have 25-30? If we work together to create a rotation of training, we could create the village needed…….
This week we celebrate the contributions cancer registrars make to the fight against cancer. Both the CTR credential and the Cancer Registry Association of Arizona turn 30 years old this year and few understand the vital role that registrars play in cancer control. As you celebrate make it a goal to educate at least one more person about the existence and the value of the registry and the work. As I once heard Dr. Dana Weeks say, “Someone has this information and it’s usually a woman and she’s usually in the basement”.
Over the past 30 years survival has increased over a wide range of malignancies due to the efforts of researchers and clinicians and patients participating in clinical trials. We know of these successes because of cancer registrars. We work each day to translate the individual experience of cancer patients into data that can be aggregated and analyzed to serve in the search for better treatments and better outcomes. We sort through manuals, attend webinars, read articles and confer with colleagues, all in an attempt to keep up with the increasingly complex process of diagnosis, treatment and research. A career in the cancer registry isn’t usually flashy or even well recognized but it is challenging, satisfying and important. Thank you for all you do.
I’m excited to welcome you to the revised and updated website for our association.
We’ve updated our look as well as our functionality. While you may still apply for membership via the paper application the website now offers the ability to apply and pay on line. This feature is available during the membership drive period which ends after March 31st, 2013. It will be available again in the fall to register for the annual conference. Melanie Zaleski of St. Joseph’s Hospital and Medical Center has graciously secured the use of the Sonntag Pavilion for October 31st and November 1st. In light of the association celebrating our 30th anniversary the board would like to make this a very special event. Please stay tuned for more details.
I’m also pleased to announce that a facebook page has been established for the Cancer Registry Association of Arizona. Please stop by and say hi as we build both sites. Phoenix Online Media has done a wonderful job revamping our website and the website will be professionally managed by them. While we think we’ve addressed our basic needs, obviously the website is a evolving project. Please let us know if there are any problems with the look or functionality, I’m also looking forward to your suggestions about improving our site and our association.
With fewer than 23,000 deaths separating heart disease and cancer deaths, cancer is poised to become the leading of death in the Unites States, and over 100 forms of cancer have been identified according to the Centers for Disease Control. Although many cancers are fatal, some are associated with higher mortality rates than others.
Lung cancer is to blame for more deaths than any other form of cancer. It is estimated that around 160,000 people succumb to lung and bronchial-related cancers every year in the United States. While lung cancer has the highest mortality rate and is the deadliest type of cancer, it is also the most preventable. Most cases of lung cancer are the result of certain lifestyle choices, particularly smoking cigarettes. Quitting smoking is the most effective way to minimize your risk of lung cancer. New data from the National Lung Cancer Screening Trial indicate that screening for select patients translates into extended survival.
52,857 Americans died from colorectal cancer in 2008. Most colorectal cancer cases begin with groupings of small, benign cells called polyps, and over time these polyps become cancerous. Screening is the only effective way to check for cancer of the colon and rectum, but many people tend to feel slightly embarrassed and ashamed about having these screening tests conducted, and choose to avoid having them done. As a result, many people who develop colorectal cancer learn that their cancer could have been diagnosed earlier, had they not avoided being screened.
Breast cancer is the second most common cancer found in women, but contrary to what many believe, it is not exclusive to women and it can affect both sexes. It is the single most deadly cancer among women, with roughly 35% of the cases in the United States resulting in fatality. Breast cancer is another form of cancer where early detection can mean the difference between life and death. Women of all ages should conduct monthly examinations of their own breasts to check for any lumps or abnormalities, and women over 40 should visit their doctor annually for a mammogram examination.
The pancreas is an essential part of the digestive system, and it aids in digestion and regulating metabolism. Cancer of the pancreas is often deadly, because it is extremely difficult to detect in its early stages. Pancreatic cancer does not always produce symptoms and it is a rapidly progressive cancer. Roughly 40,000 people die from pancreatic cancer every year.
Only the males can develop prostate cancer, and it is the second leading cause of cancer deaths among men. This type of cancer forms in the prostate, the gland that produces seminal fluid. In 2013 it is estimated that 238,590 men will be diagnosed with prostate cancer, and 29,720 will die from the disease. The American Cancer Society estimates that 1 out of 6 men will be diagnosed with prostate cancer in his lifetime.
A 2009 study conducted on cancer rates in the state of Arizona analyzed the incidence of diagnosis, prevalence of type and mortality rates for residents suffering from cancer. Overall, the study concluded that Mojave County is the only county with a cancer rate higher than the national average, though the cancer rate in Mojave is falling. Graham, Greenlee, and Gila counties all presented rates similar to the U.S. average, while Apache, La Paz, Arizona, Cochise, Coconino, Maricopa, Navajo, Pima, Pinal, Santa Cruz, Yavapai, and Yuma counties all presented statistics lower than the country’s average. Many of these counties also showed declining cancer rates.
Melanoma rates among men in Arizona were higher than the U.S. average. Liver cancer among females and thyroid cancers in males were similar to the average, though both show signs of rising. Conversely, liver cancer in males in Arizona was lower than the national average.
A number of cancers in Arizona were similar to the national average and were found to be a stable trend. These included brain cancer in both males and females, esophagus cancer in males and females, kidney and renal pelvis cancer in males and females, and ovarian cancer in females.
Childhood cancer in Arizona was also similar to the national average; however, the study found the incidences of childhood cancer was declining in 2009. Leukemia in females was also in decline, as was female melanoma and Non-Hodgkin lymphoma in females.
Other cancers that were lower than the national average and showed signs of continued decline, include bladder cancer in both males and females, breast cancer in females, cervical cancer in females, colorectal cancer in males and females, leukemia in males, lung cancer in males and females, oral cancer in males and females, pancreatic cancer in males, prostate cancer in males, and stomach cancer in males and females.
In comparison to the rest of the country, Arizona met the healthy people objective of 160.6 and had a falling mortality rate for cancer. The United States as a whole did not meet the objective but did observe a falling mortality rate. Only four counties in Arizona failed to meet the objective – Greenlee, Mojave, Gila, and Graham. Greenlee and Graham counties saw a stable trend in their mortality rates while Mojave and Gila have begun to see a decline in their cancer mortality rates, according to the 2009 study.
Cancer registries are an integral part of anti-cancer efforts, as they assist physicians in formulating treatment plans, researchers in creating abstracts, and academics in educating the public about cancer causes, treatment, and prevention methods.
If you are struggling with cancer, your information may be added to a registry to assist in controlling and preventing cancer. While it is entirely natural to worry about what sort of personal information is recorded, none of it is identifying and the information is solely used to aide in creating accurate, timely statistics related to cancer.
Demographic information collected by a cancer registry includes your age, gender, race and ethnicity, place of birth, and place of residence. This information is helpful for tracking cancer statistics across age, differences in prevalence between males and females, prevalence in different races, and cancer rates in different cities.
Your medical history information will include physical findings, screening information, your occupation, and any history you or a family member may have of cancer previously. Medical history is one of the most important elements in cancer registry data, and is highly effective in helping registrars identify and analyze patterns between patients. For example, mesothelioma has been linked specifically to patients who previously worked around asbestos through work performed by cancer registries.
Diagnostic findings collected include information relative to how you were diagnosed. This includes the type of cancer you have been diagnosed with, the date of your diagnosis, and the results of the procedures that were used to diagnose your cancer. This information helps registrars analyze the prevalence of specific cancer types and pinpoint the best procedures for diagnosing each type specifically.
Information directly related to your cancer will be collected, including the primary site, cell type, and extent of the disease. This is useful for identifying common primary sites for each type of cancer and when combined with information about the date of diagnosis, analyzing the pace at which each type of cancer progresses.
Regardless of the treatment(s) you undergo for your cancer, data will be collected for the registry, such as surgery, chemotherapy, radiation therapy, hormone therapy, and immunotherapy. Information about cancer therapy helps registrars identify how effective different treatments are for different types of cancer.
As you continue through your cancer treatment into remission, registries still collect data about your progress. This includes updates to your status, updates to your treatment plan, and recurrence, if applicable.
Cancer registrars are important members of the anti-cancer movement, as they serve as experts in both data collection and data analysis related to all forms of cancer. They collect information about patient histories, diagnoses, treatments, and statuses; then translate the information into statistics for future studies. These statistics are reported to various healthcare agencies, including oncologists, administrators, researchers, and healthcare planners. The data collected by cancer registrars is intended to help oncologists and other healthcare professionals work toward the ultimate goal of controlling and preventing cancer.
What Types of Data are Compiled?
Cancer registrars are in charge of researching and compiling data in a timely manner, while ensuring that all of their findings are accurate. Generally, they compile and maintain information on all types of cancer being diagnosed or treated within an institution or specific population. They put together complete summaries for each patient that begin at the time of diagnosis and continue on through their lifetime. The ultimate goal is to create a registry that tracks each patient’s history individually, as well as an overall profile that shows information for all patients included in the registry. Thanks to modern technology, cancer registrars use electronic databases and computer software to help them input, track, and analyze the data they collect.
Who do Cancer Registrars Share Information With?
Often working closely with cancer programs and institutions, cancer registrars are usually an active part of the leadership structure of the facilities that employ them. They monitor the overall quality of patient care, ensure that treatments are meeting clinical practice guidelines, assess patterns of care, and monitor side effects, along with adverse outcomes of treatments. Oncologists use information collected by cancer registrars to create and evaluate treatment plans for patients; researchers often use the statistics cancer registrars compile as a starting point for their hypotheses. The data is also a valuable resource for educating the public about the incidence and outcomes of many different types of cancer.
Cancer registrars may find employment in healthcare facilities, central registries, consulting firms, government agencies, insurance companies, pharmaceutical companies and other healthcare industries.
Who is Eligible to Operate a Cancer Registrar?
Cancer registrars are run by a board of directors who either trained on-the-job or attended college programs in cancer data management. College programs provide aspiring registrar members with a strong foundation of knowledge in data collection methods, medical terminology, biostatistics, and cancer data abstracting. Many not-for-profit organizations earn certification from the National Cancer Registrars Association, which also offers a variety of benefits and resources to members to help them throughout their research.