As the second leading cause of death, cancer poses a significant public health challenge in the U.S. in terms of both mortality and morbidity.¹ However, continuing progress in early diagnosis and treatment has improved survival for many cancer patients.² In 1977, fewer than 4 million people in the U.S. were living with a diagnosed cancer; in 2012, this increased to about 13.7 million, and is expected to rise to 18 million by 2022 because of improved survival as well as the growth and aging of the population.³

With an increasing number of cancer survivors, addressing the needs and health outcomes of cancer patients beyond treatment is imperative. Focus can now shift beyond preventing cancer mortality to long-term well-being. Cancer survivors, like the general population, need to manage their health by participating in preventative care; however, they also have unique needs related to their diagnosis of cancer and its treatment. In 2005, IOM released “From Cancer Patient to Cancer Survivor: Lost in Transition,” a consensus report that highlights the fact that many survivors finish their primary cancer therapy unaware of their heightened health risks and ill-prepared to manage their future healthcare needs.⁴ Furthermore, delivery of recommended follow-up care is lacking, and many of the unique psychosocial needs of survivors are not routinely addressed.

Leveraging existing information on patient diagnosis and care may help to address some survivorship needs. Unbeknownst to most patients, cancer is a notifiable disease, and collection of cancer registry data for public health surveillance is mandated by law in all U.S. states or jurisdictions. Hospitals, physicians’ offices, pathology laboratories, and other medical facilities submit data on new cancer diagnoses to a central cancer registry at the state or territorial level. Both the data routinely collected through cancer registries and the existing data collection infrastructure are uniquely poised to address many needs of cancer survivors, their physicians, and researchers.

In 1992, Congress established the National Program of Cancer Registries (NPCR) by enacting the Cancer Registries Amendment Act, Public Law 102-515.⁵ Before NPCR was established, ten states had no registry, and most states with registries lacked the resources and legislative support they needed to gather complete data. Administered by CDC, NPCR funds 45 states, the District of Columbia, Puerto Rico, and the U.S. Pacific Island Jurisdictions, which covers 96% of the U.S. population.⁶ These central cancer registries collect data on the occurrence of cancer, which includes the type, extent (stage), and anatomic origin (primary site) of the cancer (Table 1). Together, NPCR and the National Cancer Institute’s Surveillance, Epidemiology, and End Results (SEER) program⁷ collect data for the entire U.S. population. Both NPCR and SEER use North American Association of Cancer Registries standards and work together to ensure compatibility and comparability of U.S. cancer incidence, regardless of funding source.⁸ Using these data, CDC and the National Cancer Institute publish annual data from both NPCR and SEER in the U.S. Cancer Statistics Incidence and Mortality Web-based Report.⁹ Although this online report hosts the official federal cancer statistics of the U.S., NPCR and SEER data are also made available through other online tools, including CDC-WONDER,¹⁰ CDC’s Environmental Public Health Tracking Network,¹¹ and State Cancer Profiles.¹² Additionally, NPCR analytic data are available to researchers free through CDC’s National Center for Health Statistics Research Data Center.¹³

Data collection occurs at the healthcare facility or central cancer registry through medical record abstraction or electronic reporting. Incident cases from all hospitals, physicians’ offices, pathology laboratories, treatment facilities, and other medical facilities are reportable to the central cancer registry. The goal of the central cancer registry is to collect a standard set of data on all cancer patients. Consequently, the data in the state or territorial central registries represent everyone diagnosed or treated for cancer, regardless of race, age, insurance status, or geography and are submitted to NPCR or SEER on an annual basis. Because patient populations and the infrastructure needs of each state and territory are unique, central cancer registries vary in the amount of funding they receive. A recent study looking at five NPCR programs revealed that the cost per cancer case ranged from $24 to $96 while the cost of data enhancements and analysis ranged from $2.91 to $9.31 per case.¹⁴ However, despite these costs, the information captured in the central registry are invaluable to cancer surveillance and research and reflects real-world clinical experiences of diverse populations in all medical care settings.

A brief summary of the data items collected by all central cancer registries is shown in Table 1. Because these data items may come from different sources, and patients often visit various healthcare providers during their course of diagnosis and treatment, multiple health facilities may be reporting information on the same incident cancer. Although the central cancer registry is responsible for case consolidation, CDC has several surveillance informatics initiatives underway to identify better ways to use emerging technology to incorporate automated processes and electronic data exchange in cancer reporting. Examples of these initiatives include the automated transmission of pathology information to central cancer registries using the encoded College of American Pathologists Cancer Checklists and Health Level Seven messages, and cancer reporting from ambulatory providers to registries in a new public health objective for Stage 2 Meaningful Use.¹⁵

Additionally, the central cancer registry conducts data linkages with state and national databases to supplement or improve the data. Every central cancer registry routinely links cancer data with that of its state death files, the National Breast and Cervical Cancer Early Detection Program, the National Death Index, and the Indian Health Service. Some registries optionally link with other data sources, such as Medicare and Medicaid claims files to address gaps identified in their data or improve the usefulness of the data for local cancer control activities.

Together, NPCR and SEER form one of the most sophisticated public health surveillance systems in the U.S. and are the basis for nearly all cited cancer statistics and projections, including the Annual Report to the Nation on the Status of Cancer^16-18 and the American Cancer Society’s Cancer Facts & Figures.¹⁹ These routine cancer surveillance activities are paramount to all cancer research, including cancer survivorship research. In addition to the routine cancer surveillance activities of NPCR that provide incidence, mortality, and cancer prevalence estimates for the majority of the U.S., CDC has a number of initiatives underway specifically designed for cancer survivorship research and care.

Central cancer registries are uniquely capable of providing population-based lists of all patients diagnosed with a particular cancer for the purposes of research and health interventions. Cancer registries strive to include all cancer patients regardless of their SES, where they live, and whether or not they received the best clinical care. These real-world populations are invaluable in evaluating the effectiveness of interventions, whether they are new cancer treatments or behavior changes. Though state and jurisdictional laws and regulations designed to protect patient privacy dictate the availability and specific uses of cancer registry data for research purposes, CDC has undertaken a number of activities to help understand the potential that NPCR registries have for such activities.

In 2010, CDC was awarded funding to support Comparative Effectiveness Research through the American Recovery and Reinvestment Act of 2009. This project established ten Specialized NPCR Registries to collect enhanced data for people diagnosed in 2011 with breast (n>48,000), colon (n>18,00), or rectum (n>7,000) cancer or with chronic myeloid leukemia (n>700).³¹ Information collected included all typically required NPCR data elements and more-detailed information on specific treatments, biomarkers/prognostic markers, comorbid conditions, Census Tract–level SES measures, and personal characteristics such as height and weight at diagnosis (used to dose chemotherapy), smoking status, and occupation as available. One goal of this project was to examine population-based treatment patterns in comparison to treatment guidelines. Over time, survival will be compared between patients receiving different treatments. These unique data will educate both providers and cancer survivors on treatment options, practices, and potential barriers to delivery and receipt of standards of care. Multiple analyses of these data are currently underway by CDC and its state partners to explore critical issues in cancer care, including guideline-concordant use of biomarker testing and type of treatment for breast and colorectal cancer by stage. As with all NPCR data, these Comparative Effectiveness Research data are available to researchers with the appropriate human subject protection approvals through CDC’s Research Data Center.

In 2013, CDC obtained additional support through a Patient-Centered Outcomes Research Trust Fund award via the Assistant Secretary for Planning and Evaluation to collect intermediate outcomes such as progression, recurrence, and vital status, as well as subsequent therapy information on the same 2011 breast, colon, and rectum cancer cases in five of the ten Specialized NPCR Registries. A minimum of 32 months of follow-up will be completed for these cases. Through active patient follow-up, this effort will capture those with more consistent aftercare visits versus those lost to follow-up and better describe disease-free periods and time to recurrence or progression. This information will provide data on intermediate outcomes that are important to cancer survivors and their providers, as well as traditional survival statistics. In addition, these data will illustrate real-world outcomes in a population that is more varied in age and comorbid conditions than patients normally included in clinical trials. On a population level, this will give researchers a better understanding of disease course by site and stage after completion of first-course therapy. Once collected, these data will also be made available through CDC’s Research Data Center to improve the cancer community’s understanding of population-level outcomes such as progression and recurrence for these specific cancers.

In response to the 2005 IOM report,⁴ a number of expert organizations have recommended that patients, along with their primary care providers, receive from the oncology team a summary of treatment provided as part of a comprehensive survivorship care plan. Despite limited evidence of their effectiveness, these plans are now included in a number of cancer quality initiatives.^{14, 32-34} Even with the increasing interest in survivorship care plans, few recently diagnosed survivors report receiving treatment summaries and written follow-up instructions, and receipt of these documents varies widely by subgroup.^{35, 36}

There are a number of challenges to cancer survivorship care plan implementation. Provider barriers include limited staff, time, and technologic resources to develop and deliver the plans, lack of reimbursement and information, and communication systems failing to optimize communication and coordination of care.³⁷ Patients with cancer often require treatment by multiple specialists (surgeons, radiation oncologists, medical oncologists) as part of multimodal therapies. As a result, there is seldom a single integrated medical record, and there may be limited formal written communication between specialists.

To help reduce provider barriers to delivering cancer survivorship care plans, CDC in collaboration with the Colorado Central Cancer Registry recently developed a secure, web-based application that allows individual hospitals or providers to use previously collected cancer surveillance data from the central cancer registry to pre-populate and semi-automate care plans. The Web Plus Survivorship Module includes templates for breast and colorectal cancers, a generic template for all other cancers, and a collection of static resource documents covering general cancer information, physical activity, nutrition, stress management, sexual health, and smoking cessation. The module includes Spanish versions of all templates and materials. The Colorado registry conducted a pilot project with four hospital-based survivorship programs and their staff oncologists to create survivorship care plans using this tool. Oncology providers who developed and delivered the plans reported high satisfaction with the web-based application in focus groups. Patients also reported high satisfaction with the care plans they received. CDC continues to work with the Colorado Central Cancer Registry to integrate the tool into Registry Plus™, a suite of publically available free software programs developed and supported by CDC for collecting and processing cancer registry data.³⁸ Though the Web Plus Survivorship Module is still in the final stages of beta testing, CDC is exploring expanding use of the module to other NPCR cancer registries as well as development of new content for additional cancer types.

Although the completeness and timeliness of data collected through cancer registries may limit the availability of some data for populating survivorship care plans, at least some of the data needed by the clinician compiling a care plan will be available in the registry. This project demonstrates innovative use of routinely collected registry data to inform cancer survivors about their cancer diagnosis, the care they have received, and expectations for their next steps and future care. It also helps healthcare providers develop and deliver survivorship care plans that meet requirements of initiatives meant to improve the quality of cancer care. This project leverages resources, using previously collected data from the central cancer registry to reach out to community oncologists and primary care providers to illustrate how the registries can help them improve communications and efficiencies in meeting the needs of cancer survivors. The multidirectional sharing of health information as demonstrated in this project has tremendous potential and applicability for not only cancer registries and survivorship care, but also other disease registries. CDC plans to continue this initiative with the goals of facilitating the integration of this system into existing physician workflows for interested hospitals or vendors, exchanging structured data across systems, and leveraging existing tools to allow patients to access all their health information, treatment summary, and survivorship care plan electronically.

The NPCR cancer registries are faced with a number of barriers and challenges to collecting, maintaining, and disseminating the most useful data for public health surveillance and research. Existing legal and regulatory requirements often dictate the availability and use of certain data. Registry data collection is traditionally limited by the type of data available in medical records. Finally, the availability of resources (e.g., financial, personnel, information technology) at the national, state/territorial, and local levels also constrain the capabilities of cancer registries. However, if cancer registries can find ways to overcome these barriers, they have tremendous potential to improve quality cancer survivorship care.