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Thyroid Cancer Care Collaborative offers paradigm to improve disease management, research
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A comprehensive Web-based program developed by the Thyroid Head and Neck Cancer Foundation, in conjunction with a multidisciplinary forum of nationally-recognized thought leaders in thyroid cancer management, could significantly improve delivery of patient care and benefit clinicians and researchers, according to research published in Thyroid.
The Thyroid Cancer Care Collaborative (TCCC), which reports and stores all data related to individual patients’ thyroid cancer care, could represent a new paradigm for database research in thyroid cancer to improve clinicians’ understanding of managing the disease.
“Databases have provided valuable information about large groups of patients in the study of thyroid cancer, but research using current databases have significant limitations,” Saral Mehra, MD, MBA, of the head and neck program, section of otolaryngology, Yale School of Medicine, told Endocrine Today. “Aside from various time-saving quality improvement and educational services, the TCCC database feature has the potential to become an extremely powerful research tool to answer questions about thyroid cancer care that current databases simply cannot.”
Saral Mehra
Shortcomings among current registries
Recognizing the many unknowns surrounding optimal treatment and surveillance recommendations for differentiated thyroid cancer, Mehra and colleagues from other institutions undertook a review of health registries used for cancer research in the United States, concentrating on advantages and disadvantages relative to the study of thyroid disease.
Population-based cancer registries, health systems-based cancer registries and patient-based disease registries were included in the analysis.
“We wanted to critically analyze databases currently used in thyroid cancer research to educate practitioners about the pros and cons of such publications, and then describe the potential of a patient-centered disease-based health registry specific to thyroid cancer to improve the quality and depth of large-scale database research in thyroid cancer,” Mehra said.
For clinicians to critically interpret clinical research based on data from such registries, understanding their collection methods and composition is of fundamental importance, according to the researchers.
Most publications from population-based cancer registries, which exist in every state in the United States, use data from the Surveillance, Epidemiology and End Results database program, which is a group of 20 registries selected to be representative of the broader populace.
Although the surveillance program is a powerful tool to study epidemiology and outcomes, the program cannot capture data that could help to improve patient care, including details about nodal disease, according to the researchers. Further, follow-up is limited to survival status and cause of death.
Health systems-based cancer registries gather incident cases in a particular setting, whether it is a single institution, multi-institution, payer-based or hospital-based registry; the investigators highlighted the National Cancer Database as the premier multi-institution program, capturing an estimated 67% of new cancer cases in the United States.
Despite their utility in providing data to understand thyroid cancer, including predicting patient prognosis and stratifying patient risk, there exists a lack of depth in data collected and a bias in types of patients treated, according to the researchers. Further, quality of data from large databases can affect statistics, and follow-up can drop off as patients change treatment locations.
Patient-based registries, targeting specific questions among patients with a particular disease or who have undergone a certain treatment across clinical sites, would be especially helpful in thyroid cancer where much coordination is required among specialists and better data collection and analysis is needed, according to the researchers. As of now, there are no such tools.
“A cancer registry that follows a specific patient, is integrated into physician work-flow, and collects data across different treatment sites and different payers does not exist in the current fragmented system of health care in the United States,” the researchers wrote.
A future of improved care
The TCCC could fill this gap, according to dozens of researchers who have worked with the Thyroid Head and Neck Cancer Foundation to pen a series of papers in the past year detailing why and how.
“The TCCC provides portability of information for patients and physicians,” Mark L. Urken, MD, FACS, of the department of otolaryngology head and neck surgery, Icahn School of Medicine, Mount Sinai Beth Israel Medical Center, told Endocrine Today. “It enhances communication between the physicians involved in the care of a single patient, in particular for clinicians who are not connected by a common electronic health record.”
Mark L. Urken
In another review published in Thyroid, Mehra and colleagues demonstrated how the program, through advanced technology, addresses recommendations laid out by the Institute of Medicine to guide health care organizations and clinicians in redesigning the care process.
Among the TCCC features are: automated disease staging based on scoring systems; illustrated educational videos; personalized clinical decision-making modules; data portability for sharing purposes; “ask the experts” and “frequently asked questions” modules; workflow integration; and data for comprehensive analysis in addressing difficult questions in disease management.
The 12 clinical decision-making modules within the repository process patient data and display personalized treatment recommendations.
“This offers in-depth understanding for patients who are so empowered to participate in the numerous decisions that must be made during their thyroid cancer journey,” Urken said.
In an analysis of the management of patients with recurrent/persistent well-differentiated thyroid cancer published in Head & Neck, Urken and colleagues said the modules “allow for easy adoption of contemporary knowledge, making this information accessible to both patient and clinician.”
Fully compliant with the Health Insurance Portability and Accountability Act (HIPAA), the TCCC functions as a repository of disease-specific patient information; it already contains more than 700 patients, with at least 1,000 anticipated by the end of the first quarter of 2015, Urken said.
The TCCC has obtained approval for prospective and retrospective patient entry from the Western Institutional Review Board. It also has already achieved institutional review board approval at Oregon Health Sciences University and Stanford University and is in the final stages of approval at Johns Hopkins Medical Center.
The program continues to make additions and improvements. “We are launching an ultrasound imaging module that will provide a much more user friendly interface for efficient and rapid reporting of ultrasound results,” Urken said.
A demonstration of the TCCC is available to view online at www.thyroidccc.org/intro.
– by Allegra Tiver
References:
Mehra S, et al. Thyroid. 2014;doi:10.1089/thy.2014.0270.
Mehra S, et al. Thyroid. 2014;doi:10.1089/thy.2013.0441.
Urken ML, et al. Head Neck. 2012;doi:10.1002/hed.23615.
For more information:
Saral Mehra, MD, MBA, can be reached at Yale School of Medicine (Otolaryngology), Head and Neck Cancer and Reconstructive Surgery, 800 Howard Ave., 4th Floor, New Haven, CT 06520; email: saral.mehra@yale.edu.
Mark L. Urken, MD, FACS, can be reached at murken@chpnet.org.
Disclosure: Mehra and Urken report no relevant financial disclosures.
Perspective
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R. Mack Harrell, MD, FACP, FACE, ECNU
AACE supports bioinformatics projects like the Thyroid Cancer Care Collaborative (TCCC) and believes that comprehensive data collection is the linchpin for improving care for patients with thyroid nodularity and thyroid cancer. However, implementation remains the crux of the matter. How will physicians across the country react to a multi-page data entry process? Who will do the data entry when doctors are already strapped for time with direct patient care? At what point will the TCCC be able to automatically extract data from highly proprietary electronic medical records? Who will decide on standard electronic medical record data entry fields and ensure interoperability? Finally, will registries like TCCC link with the American Association of Endocrine Surgeons postoperative outcome registry and with established functional registries like the National Cancer Database? The answers to these questions will determine whether the TCCC becomes an overwhelming success or just another unimplementable good idea. We will follow with great interest.
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