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Who Collects Cancer Data?

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

What is a Cancer Registry?

Part 2 of a multi-part series on cancer surveillance and data collection in the United States.

Cancer Regstries collect data on cancer incidence and mortality across 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.

Cancer Surveillance in the USA

Part 1 of a multi-part series on cancer surveillance and data collection in the United States.

Cancer surveillance is defined by the American Cancer Society as the “ongoing, timely, and systematic collection of analysis of information on new cancer cases, extent of disease, screening tests, treatment, survival and” mortality (ie cancer-related deaths). In a nutshell, scientists, researchers and healthcare providers keep an eye on all things cancer and track it for public health purposes.

How is cancer data used? Cancer data is used to look at trends over time, to identify patterns in geographic regions or groups of people, or to show if cancer screening or other cancer-prevention activities are making a difference. For example, the data can show a difference in new cancer diagnosis rates, death rates, or in a decrease in behaviors that are known to increase a person’s risk for getting cancer, such as tobacco smoking.

There is no single surveillance or cancer program in the United States that collects data on all the new cancers diagnosed each year. Some segments of the US population are covered by separate programs sponsored by government or private organizations who provide reliable data on their own segments or defined populations and groups. These programs are built around the cancer registry, or registries that are established to record, classify and report cancer case data in the areas they cover.

Your Emotional Health

Nurturing Your Well-Being

We know that taking care of our physical health is important. Not smoking, drinking in moderation, eating right and exercising are all important aspects of our physical health. But, do you take care of your emotional health too? Do you have an overall sense of happiness and well-being?

Webster’s Dictionary defines well-being as “a state characterized by health, happiness, and prosperity; welfare.”

High levels of well-being have been shown to:

  • Lower a person’s risk of disease, illness and injury
  • A more efficient-functioning immune system
  • Living a longer, better quality of life
  • Functioning at a higher level of work, increased productivity

Stated another way, maintaining a positive outlook, expressing gratitude and being happy goes a long way to protecting your overall health and well-being. According to the Mental Health America website, here are some things you can do to achieve a greater sense of well-being:

  • Spend quality time with your family and friends; get out, socialize and meet new people.
  • Focus on the positive aspects of your life, not the negative.
  • Develop a regular habit of physical exercise and eating a healthy diet of fruits and vegetables and less meat proteins, sugary drinks or unhealthy carbs.
  • Practice gratitude and caring for someone else.
  • Laugh a lot and don’t take yourself too seriously.
  • Get 6-8 hours sleep each night and stay hydrated.
  • Meditate or focus on your spiritual needs.

By making frequent small changes in your life you will see your well-being and happiness increase. Each of us is capable of improving our well-being but you do have to start to reap the benefit.

Enhancing Patient Care by Promoting Health Literacy

Enhancing Patient Care
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.  

To address this, the National Cancer Policy Forum and the Roundtable on Health Literacy of the National Academies of Sciences, Engineering, and Medicine hosted a workshop in July 2019 to generate strategies to support patients with varying levels of health literacy. The workshop participants defined health literacy as “the degree to which individuals can access, comprehend, and use information to make healthcare decisions.”

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.

In February 2020, the National Academies published “Health Literacy and Communication Strategies in Oncology: Proceedings of a Workshop,” summarizing the participants’ observations and recommendations and proposing strategies for improvement in multiple areas. Among the recommendations:

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.)
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  1. Hersh L, Salzman B, Snyderman D. Health Literacy in Primary Care Practice. Am Fam Physician. 2015 Jul 15;92(2):118-124.

Can OTC Drugs Kill Cancer?

OTC Drugs May Be Repurposed to Kill Cancer
OTC Drugs May Kill Cancer

Is it possible that there are, literally, thousands of drugs that are available over-the-counter (OTC) that are available to treat cancer? In a recent study by the Broad Institute of MIT and Harvard and Dana-Farber Cancer Institute researchers reported that they have systematically analyzed thousands of drug compounds and discovered anti-cancer activity. These surprising findings also revealed possible ways to accelerate the development of new cancer drugs or how existing drugs may be repurposed to treat cancer. The entire study was published in Nature Reviews Cancer (note: a fee may be required to access this article).

According to Dr Steven Corsello, an oncologist at Dana-Farber and founder of the Drug Repurposing Hub, they found nearly 50 non-cancer drugs that killed some cancer cells while leaving others alone. Initially these drugs were marketed to lower cholesterol or reduce inflammation.

He noted that some of the compounds killed cancer cells in unexpected ways but the drug mechanisms were easier to find using a cell-based approach measuring cell-survival instead of a more traditional non-cell-based screening method.

Researchers are continuing to study the repurposing of compounds in more cancer cell lines and to grow the hub to include even more compounds that have been tested in humans. You can visit the hub’s website to learn more about the data scientists have collected from this and ongoing studies. At this time the Hub includes information gathered from over 4,500 different drugs.

CoC Operative Standards

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.

Mother Sings a Precious Song to Her Dying Daughter

As cancer registrars we should never forget the purpose and people behind our work!

Many medical guidelines don’t consider costs

Published in:  The Baltimore Sun / Reuters, May 8, 2013  

NEW YORK (Reuters Health) – Professional medical societies don’t often consider costs when they’re developing their treatment guidelines for specific conditions, according to a new study. Researchers found that just over half of the top medical societies with at least 10,000 members considered costs when developing best practices. The other half either implicitly considered costs or didn’t address them at all. “Even when they said they looked at costs, they didn’t seem to have a clear, consistent or rigorous way to do so,” said Dr. Steven Pearson, the study’s senior author and a visiting scientist in the Department of Bioethics at the National Institutes of Health in Bethesda, Maryland.