Part 3 of a multi-part series on cancer surveillance and data collection in the United States.
Cancer Registries are staffed with Cancer Registrars who have met the stringent and complex requirements for education, training and work experience. While some Registries have non-credentialed staff who perform administrative tasks or are in training for their credentialing exam, most Registrars are certified tumor registrar’s, or CTRs. Only CTRs can abstract from the medical record cancer information that is reported and used for statistical and quality studies.
There are several processes, or phases, to cancer data collection and reporting. It starts with casefinding, or identifying the people with cancer who have been diagnosed or treated at the hospital or other medical facilities. Most patient’s start their cancer journey with a visit to their primary care physician (or PCP) and are then referred to specialists who will diagnose and recommend treatment for their specific type of cancer.
“Casefinding is like casting a net far and wide to “capture” all the reportable cancer cases.” (1)
CTRs look at the medical record and through manual or automated processes enter the cancer site, histologic type, patient demographics (such as gender, race or age) and the extent of disease (or the stage) into the case abstract. Some Cancer Registries will collect additional medical and scientific data elements, such as the type of treatment, and then follow the patient each year to track any reported recurrence and lifetime survival.
(1) Surveillance, Epidemiology and End Results (SEER), National Cancer Institute
Part 2 of a multi-part series on cancer surveillance and data collection in the United States.
Cancer data is collected in the USA by a system of registries. Data collected depends on the purpose of each registry and there are two primary types:
Hospital Registries, usually a department in a hospital, cancer center or medical facility.
Population-based Registries, typically found in state health department or government agency.
Hospital Registries provide hundreds of data elements, some of which are quite complex, that is used to study and evaluate the patient care process given within the hospital. Hospital-based data is focused on things like the care of the cancer patient (from diagnosis, treatment and on to lifetime follow-up) to educating the healthcare providers. If a hospital is part of a system or affiliated group of hospitals they may pool their data and use the collective information to learn more about how the different types of cancers respond to the care given system-wide. Pooled data can be used in studies to compare trends or patterns of care, demographic or population subsets or by geographic region.
Population-Based Registries are often a part of a state, or even national, health department system. They collect the information on all cases diagnosed within a certain geographic area. They also pull together information from the reporting facilities within their geographic region that may include, but is not limited to:
Hospitals,
Doctor’s offices,
Nursing homes,
Pathology laboratories,
Radiation and chemotherapy (infusion) treatment centers,
Ambulatory care facilities or clinics,
Or other cancer care facilities.
Population registries use this larger pool of data to study new cancer cases (or incidence) and death rates (or mortality) in the regions across the United States. Population-based registries can look at cancer rates in certain types of jobs or groups of people, and see if the cancer survival is improving or not in each group. They can also watch trends over time to find out if the rate of a certain type of cancer is increasing or declining over time. Lastly, they can monitor the incidence or mortality rates in age or ethnic groups to see who is most affected by different types of cancer. One example of this type of analysis is published in the Cancer Facts & Figures each year by the American Cancer Society.
Information also reported by hospital-based and population-based registries helps to guide local, regional and national cancer prevention and control programs that focus on changing certain behaviors (like smoking), lifestyle (like healthy eating habits) or environment risks (like asbestos exposure). The data from a cancer registry helps to identify a specific need for increased cancer screening (like lung cancer screening) in a certain region or area.
Enhancing Patient Care by Promoting Health Literacy
The causes, symptoms, and treatment of cancer can be enormously complex. Upon being diagnosed, people are often thrust into a medical world that is completely unknown to them. Some find themselves in the position of having to make complicated treatment choices in a short amount of time. Given that research indicates that more than one-third of U.S. adults have limited health literacy, that prospect can be overwhelming.1
Of course, physicians and nurses counsel patients and explain their options, but a recently diagnosed patient is often not in the best place to absorb complex medical information and make life-changing decisions. Clinicians, accustomed to medical jargon, may assume that patients possess a baseline medical knowledge that they do not. Patients and caregivers may be hesitant to speak up and request that the provider explain terminology or slow down, leaving them confused. This can compound the anxiety that patients are already feeling, making it less likely that they will participate in their own care.
The workshop convened a panel of patients, patient advocates, clinicians, researchers, and representatives from healthcare organizations, academic medical centers, insurers, and federal agencies. Speakers discussed the barriers to effective communication in cancer care, specifically when trying to meet diverse health literacy needs and ensure culturally competent communication.
Promote more effective communication between providers and patients.
Implement communication training programs for oncology clinicians that include strategies for improving listening skills, promoting open dialogue, and tailoring information to match patients’ communication preferences.
Ensure clinicians clearly articulate the distinctions and components of palliative care and hospice care and address patients’ and families’ questions about these care options.
Provide complex health information to patients clearly and concisely, even if simplification reduces precision.
Facilitate open discussion of cancer treatment costs with patients and families by offering training to clinicians and developing patient-centered tools to build health insurance literacy.
Counter misinformation in the public sphere about cancer treatment.
Disseminate accessible, engaging, and actionable public health information about cancer prevention that uses effective design principles.
Create a national council or network to engage diverse stakeholders in developing guidelines, strategies, and tools for communicating evidence-based information about cancer to patients, families, and communities.
Partner with social media platforms and use social media to communicate cancer information to the public and respond to misinformation.
Build trust with members of the public and patients by actively engaging them in conversations about health and by communicating health information clearly and in plain language.
Meet the health literacy needs of diverse populations and promote culturally competent communication.
Incorporate diverse patient voices in research design and dissemination.
Develop evidence-based frameworks for integrating culture in oncology research and care.
Disseminate knowledge about the effects of health literacy on health outcomes and further strengthen the evidence base through research that engages underrepresented communities.
Adapt patient-clinician communication to meet the cultural and linguistic preferences of patients and their family members.
Promote health literacy within healthcare organizations.
Regularly assess patients’ health literacy needs to identify opportunities to tailor communication and build health literacy skills.
Implement patient navigation programs to address barriers to care, including the potential for reduced access due to health literacy limitations.
Train all healthcare organization employees in best practices for communication and strategies to address the health literacy needs of patients and families.
Implement policies within healthcare organizations to support patient self-management, particularly during key transitions in cancer care.
To help cancer programs evaluate and promote health literacy within their organizations, ACCC has developed a health literacy gap assessment tool. By completing the assessment, cancer programs can identify opportunities for advancing health literacy and subsequently enhancing patient care. ACCC has also created a list of curated resources for programs to use post-assessment.
For more information on the proceedings of the National Academies Workshop on Health Literacy and Communication Strategies in Oncology—including information on leveraging media for cancer education and prevention, responding to the specific needs of adolescents and young adults (AYAs) with cancer, promoting continuing care through survivorship, and teaching patients self-management—refer to the full text.
(Thank you Association of Community Cancer Centers for your generous sharing of this content. To view the post at the ACCC site, please click here.) ________________________________________________
Hersh L, Salzman B, Snyderman D. Health Literacy in Primary Care Practice. Am Fam Physician. 2015 Jul 15;92(2):118-124.
On January 9, 2020 the Commission on Cancer (CoC), American College of Surgeons (ACoS) announced the release of six operative standards in the CoC Optimal Resources for Cancer Care 2020 Standards (Standards 5.3 through 5.8). These new standards will go into effect in January, 2020 and implementation phased in over the calendar year. CoC accredited facilities will not be rated on the new standards until 2021 site visits.
The CoC is developing resources related to the operative standards to assist accredited programs with implementation. In the future they plan on releasing synoptic reporting templates and smart-phrases for use, including electronic medical record (EMR) integration.
To read more about the standards requirements and resources, click here.
Cancer Registrars have been using ICD-10 mortality codes for some time and we are familiar with coding and standards changes. But, what is the “inside scoop” on why are ICD-9 codes are being replaced? Here are some quick facts on what is happening in the industry.
ICD-9-CM is a diagnostic and procedural classification system originally developed in the 1970’s. As you might expect, its use has surpassed the original design and ICD-9 is no longer effective. It simply cannot be stretched or updated any further to support 21st century medicine and healthcare.
United States is the only industrial nation that has not upgraded its morbidity classification system. By upgrading to ICD-10 we will improve our ability to monitor and respond to international health events, increase the value of theUS’s investment in SNOMED-CT®, and help provider organizations to achieve better benefits from the electronic health record (EHR).
Briefly, ICD-9:
Does not have adequate specificity and detail.
Is running out of capacity and its limited structural design cannot accommodate new advances in medicine, medical technology, or the rapidly growing need for quality data.
Is obsolete and no longer reflects current knowledge of disease processes, medical terminology or 21st century practices of medicine.
Impedes the use of a standardized system needed to compare costs and outcomes from different medical technologies and specialties.
Cannot support theUnited States’ transition to an interoperable health data exchange format.
In summary, replacing the ICD-9 system with ICD-10 will help us to better maintain clinical data comparability with the rest of the world regarding conditions and diseases that require healthcare services. ICD-10 makes it easier, and this directly affects cancer registrars, to share disease and mortality data during these critical times for public health.
Cancer Registrars are already asking what the “ripple effect” will be for them. The answer is simple, we don’t know yet. Perhaps there will be change, but until ICD-10 is fully implemented the cancer registrar would be better served by developing an understanding of what is needed to analyze and report accurate and quality data in the 21st century and adopting a mindset that welcomes expanded use of cancer registry data and patient care outcomes.
To learn more about ICD-10 visit the American Health Information Management Association (AHIMA) website by clicking here. Check back to our website for future posts about what is happening with ICD-10 and other planned training events such as webinars, white paper summaries and more.
If you find this post helpful, add a comment below and tell us why!
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Michele Webb creator of http://www.RegistryMindset.comthe cancer registrar’s best online resource, is a nationally recognized, certified cancer registrar, committed to Cancer Registry leadership and professional education as a coach, mentor, motivational speaker and author. You have permission to repost this article as long as do not alter it in any way and give a link back and credit to the author and this URL.
SEER released an update to the desktop version of Hematopoietic and Lymphoid Neoplasm Case Reportability and Coding Manual version 1.6.2 today. If you are a working cancer registrar or cancer registry student and have not already downloaded this update you may want to consider doing so right away.
This online manual contains the instructions and data collection rules for hematopoietic and lymphoid neoplasms that went into effect on January 1, 2010. Remember the older version we dubbed “the red book.” This online database replaces the “red book” and contains more information, including the MP/H rules.
When you download and install, don’t forget to sign up for email updates so that as new versions are released you are notified right away so you keep your references up-to-date. This is an incredibly valuable resource that every cancer registrar must have!
TELL US YOUR STORY … how have you used, or how has the SEER hematopoietic online database helped you? Scroll down and post a short comment and help another cancer registrar today.
http://www.RegistryMindset.com. Michele Webb is committed to cancer registry leadership and to making a difference in the lives of cancer registrars worldwide. She is a nationally recognized, certified cancer registrar (CTR), a motivational speaker, author and educator. You have permission to repost this article as long as you do not alter it in any way, give credit tot he author and link back to this article on this website.
(Part Three of Our Series on “Agility Training for the Cancer Registrar)
Assumptions make our lives easier. As creatures of habit we frequently rely on our assumptions and past experiences to drive our actions. Most of our day, with few exceptions, is driven by our unconscious assumptions and habits developed over time versus creative thinking and new conscious thought.
For example, when cooking over an open flame you automatically draw your hand back when you feel heat from the flame. This “stimulus-thought-response” chain of events relates to pain you previously felt from burning your hand. This automatic assumption serves you well and avoids a painful experience.
In business, however, this is often not the case. Cancer Registrars, for example, may use any number of assumptions, or statements of belief about their work, such as:
“That won’t work here.”
“I’ve tried that before.”
“We don’t get support for that here.”
“They just don’t listen to me.”
Brilliant, and successful, Cancer Registrars know that these assumptions can be challenged and take great pleasure in defying them. They welcome the opportunity to look within themselves, to create a new energy and develop new directions to solving problems or leading their Cancer Registry in a different direction.
Each of us has an inner reservoir of talent, ability, and intelligence. It is endless and readily available if we are willing to step out of our comfort zone to tap into these resources. Whatever you face, taking one step closer to success means you must trust your inner self, ignore criticism and judgment, and let go of your own resistance to doing something differently or believing that you can make a difference. Developing a new habit or behavior, based on what you know in your heart to be the right thing to do, is all the evidence you need to make your passion become reality. This mindset is what creates harmony and balance in life and business and determines your path between success and failure.
Here are six tips to help you challenge your assumptions:
Recognize that you, and everyone else, have assumptions about every situation.
Ask basic questions in order to discover and challenge those assumptions.
Compare the ground rules and assumptions to your situation or problem and then ask yourself, “What if we do the opposite of the norm?”
Pretend you are not a Cancer Registrar and ask yourself, “Why do we do it this way at all?”
Reduce the problem or situation to its most basic elements for understanding and creative problem solving.
Restate the problem in completely different terms.
It is up to you to decide what you would like to do to drive growth and success in your Cancer Registry. You must be willing to step outside of your comfort zone to challenge your assumptions and develop new behaviors to help you grow personally and professionally. By tapping into your inner resources you will develop a new mindset that is creative and in harmony with everyone you encounter.
What assumptions are you challenging today? How do you respond to “But we’ve always done it this way.”
http://www.RegistryMindset.com. Michele Webb, America’s Cancer Registry Coach, is a nationally recognized, certified cancer registrar (CTR). She cares passionately about helping cancer registrars around the world to grow personally and professionally and serves her community as a motivational speaker, author, and educator. You have permission to repost this article as long as you do not alter it in any way, give credit to the author and link back to her website.
A cancer registrar can experience setbacks for many different reasons. As the information experts in healthcare they must balance dwindling resources with increasing complexity in data collection along with increasing demands for their resources and expertise. As with any profession, it is not uncommon for a setback or challenge to get out of control and develop into a full blown crisis. However, while crisis is uncomfortable it can bring you face-to-face with what really matters and force you to clarify and take notice of something you might have otherwise missed. It is in these moments that the cancer registrars develop their resiliency and strength of character.
Here are five steps the cancer registrar can use as they deal with setbacks:
Know that everything you feel, when faced with a challenge, is valid. It’s OK to validate your feelings as long as you do not become consumed by them.
Share your feelings with someone who can be objective and help you to see around the obvious obstacles towards a positive solution.
Focus on the moments in your life, or types of situations you have experienced, that created a positive emotion. Hold on to these moments as you face the challenge – they are a platform for you to use as you move forward.
Surround yourself with peers or individuals that will actively help you focus on your goals and making the right decisions. Eliminate negativity in your network.
Never let a crisis go to waste. Analyze the lessons and insights and channel these into your strengths. These experiences will continue to serve you the rest of your life. Never forget that growth follows setbacks. Here are a couple of questions to ask: (1) What can I learn from this? (2) What is working, or what is right about this? (3) Where can I use my strengths to help me get through this?
Use these questions to generate meaning and productive thoughts. Don’t be afraid if the questions bring about an emotional outcome, use these to your advantage by creating something positive and turning them into a strength of character.
Lastly, decide to look at challenges and setbacks from a positive viewpoint rather than one of failure. Your attitude and mindset will determine which direction you go. Focus on what is working and the steps you are taking to reinforce positive actions. Let your emotions and behaviors amplify the positive intentions and outcomes you wish to receive.
Winston Churchill said, “When you’re going through hell, just keep going.” Cancer Registrars may identify with Churchill but more importantly they should adopt a positive mindset and determine to face challenges and setbacks with the intent of developing strength of character and resilience.
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http://www.RegistryMindset.com. Michele Webb, America’s Cancer Registry Coach, is a nationally recognized, certified cancer registrar (CTR). She cares passionately about her work and enjoys helping others to become cancer registrars and grow professionally. She is a motivational speaker, published author, trainer and netpreneur in the exciting field of cancer registry and oncology healthcare.
Jean Campbell is a two-time breast cancer survivor and former director of the American Cancer Society’s New York City patient Navigator Program. Her story is compelling, from the heart and could even make you chuckle. As cancer registrar’s we are very aware of the many heart wrenching stories of people who are diagnosed with this horrible disease. However, with the bulk of our work happening behind the scenes, focusing on data collection and quality control we can become insulated against what is really happening to women and men who are diagnosed with this disease. And, even with all the knowledge that we have, when it happens to one of us, or a member of our family, or friend, we react with the same emotions as everyone else. Take a few minutes to check out Jean’s website and blog to put our work into perspective.
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