Improving the Quality of Thyroid Cancer Care: How Does the Thyroid Cancer Care Collaborative Cross the Institute of Medicine's Quality Chasm?

Abstract

Background:

The current systems of healthcare delivery in the United States suffer from problems that often leave patients with inadequate quality of care. In their report entitled “Crossing the Quality Chasm,” the Institute of Medicine (IOM) identified reasons for poor and/or inconsistent quality of healthcare delivery and provided recommendations to improve it. The purpose of this review is to describe features of an innovative web-based program called the Thyroid Cancer Care Collaborative (TCCC) and see how it addresses IOM recommendations to improve the quality of healthcare delivery.

Summary:

The TCCC addresses the three actionable IOM recommendations directed at healthcare organizations and clinicians to redesign the care process. It does so by exploiting information technology (IT) in ways suggested by the IOM, and it fits within a set of 10 rules provided by the IOM. Some features of the TCCC include: (i) automated disease staging based on three validated scoring systems; (ii) highly illustrated educational videos on all aspects of thyroid cancer care; (iii) personalized clinical decision-making modules for clinicians and physicians; (iv) portability of data to share among treating physicians; (v) virtual tumor boards, “ask the expert,” and frequently asked questions modules; (vi) physician workflow integration; and (vii) data for comprehensive analysis to answer difficult questions in thyroid cancer management.

Conclusion:

The TCCC has the potential to improve thyroid cancer care delivery and offers several benefits to patients, clinicians, and researchers. The TCCC is a valuable example of how IOM initiatives can improve the healthcare system.

Introduction

Quality in healthcare has been defined as “the degree to which health services…increase the likelihood of desired health outcomes and are consistent with current professional knowledge.” (1). Similarly, “quality care means providing patients with appropriate services in a technically competent manner, with good communication, shared decision making, and cultural sensitivity” (1). But perhaps the simplest definition of healthcare quality is “getting the right care to the right patient at the right time—every time” (2).

The current systems of healthcare delivery in the United States suffer from a number of major problems that leave patients with inconsistent and, in many cases, poor quality healthcare. In most cases, poor quality care occurs because of fundamental shortcomings in the organization of care, not because of failures in goodwill or effort (3).

In their landmark report entitled “Crossing the Quality Chasm: A New Health System for the 21st Century,” the Institute of Medicine (IOM) analyzed the state of the U.S. healthcare system, identified four fundamental reasons for poor and/or inconsistent quality of care, and provided 13 recommendations by which to improve it (3). It is remarkable how applicable the IOM analysis is to the specific case of thyroid cancer. Thyroid cancer has been identified as one of seven cancer types that have increased in incidence over the past decade (4), and its requirement for lifelong patient surveillance poses a challenge for both the patient and the overburdened healthcare system.

Herein, we describe an innovative web-based program called the Thyroid Cancer Care Collaborative (TCCC) created by key opinion leaders in thyroid cancer from across the United States with the aim of improving the quality of thyroid cancer care. The TCCC was designed and developed to be a comprehensive online program for patients, clinicians, and researchers to report and store all data related to a patient's thyroid cancer care. The TCCC is an implementation tool, not a clinical practice guideline (CPG), clinical algorithm, or other bona fide white paper. The TCCC meets the strictest standards for compliance with the Health Insurance Portability and Accountability Act (HIPAA). In addition to being an online repository of clinical information, the TCCC provides education and evidence-based clinical decision-making support services to patients and physicians within the framework of both the American Thyroid Association (ATA) and National Comprehensive Cancer Network (NCCN) CPGs for thyroid cancer (5,6). The TCCC also promises to serve as a valuable resource for large-scale clinical research, which is vital for making progress in the management of thyroid cancer.

The objectives of this paper are to use the IOM conclusions to discuss why we often have poor quality thyroid cancer care, describe the TCCC, and show how it uses information technology (IT) to improve potentially the quality of care, and see how the TCCC addresses the recommendations made by the IOM to improve the quality of healthcare delivery.

Review

Why do we have inadequate quality in thyroid cancer care delivery?

The IOM identified four fundamental reasons for inadequate quality of healthcare in the United States. While these IOM conclusions relate to the United States healthcare system in general, they are remarkably applicable to the specific case of comprehensive thyroid cancer care management.

1. The growing complexity of science and technology

Over the past few decades, there has been an explosion in basic science and epidemiologic information in all fields of healthcare (7). Thyroid cancer is certainly no exception to this trend; the number of PubMed indexed articles on the phrase “thyroid cancer” has steadily increased every year from 630 in 1982 to more than 2700 in 2012 (Fig. 1).

FIG. 1.

Number of PubMed indexed citations on the term “Thyroid Cancer” from 1975 to 2012 is evidence of the quickly and consistently expanding knowledge base in the science of thyroid cancer. The difficulty in synthesizing and applying the growing complexity of science and technology is one of four Institute of Medicine (IOM) reasons for poor quality healthcare delivery.

As the IOM explicates, an unaided human cannot act effectively on this huge volume of clinically relevant scientific literature and retain all of the information necessary for sound, evidence-based practice. So, how can we apply the latest evidence to every patient every time and continuously analyze data from thyroid cancer patients across the country treated in different settings over a long period of time to improve our understanding of effective practices?

One option would be to shift the care of all thyroid cancer patients to a select number of regional academic medical centers, where subspecialists presumably keep abreast of the latest literature and have the patient volume to support a comprehensive program. However, the staggering number of patients newly diagnosed with thyroid cancer in the United States (currently estimated at more than 60,000 new cases per year for 2013) (8) is a logistical and economic obstacle to this approach. Furthermore, divergent institutional cultures and infrastructural constraints have presently deterred effective interinstitutional collaboration within our healthcare system, conferring a rational pessimism that this option is viable. Another option is to bring durable white paper instruments, such as CPGs and clinical algorithms, to point-of-service of practitioners who treat thyroid cancer. Unfortunately, despite the best efforts of sponsoring professional societies (e.g., the ATA, the American Association of Clinical Endocrinologists, the NCCN), implementation of CPGs remains an overt shortcoming. Thus, the paradigm of standardized care can remain, but to be effective, it must include an actual implementation tool.

2. An increase in the number of patients with chronic conditions

Thyroid cancer is not self-limiting, and the consequences of treatment and monitoring for recurrence lasts longer than three months. Therefore, thyroid cancer can be considered a chronic condition. Just as the estimated number of Americans with one or more chronic conditions has grown at an alarming rate over the past 20 years, so too has the number of patients diagnosed with thyroid cancer. Thyroid cancer has been identified as one of seven cancer types that have increased in incidence over the past decade (4), with incidence rates steadily increasing from 4.9 per 100,000 in 1975 to 13 per 100,000 in 2008 (Fig. 2) (9). The reason for this steady increase cannot be explained completely by earlier and more frequent detection (10).

FIG. 2.

Surveillance, Epidemiology and End Results data showing incidence of thyroid cancer in the United States over time (per 100,000).⁹

By almost all definitions, thyroid cancer can be considered a chronic condition. The increase in chronic conditions has been identified as another reason for poor and/or inconsistent quality of healthcare delivery. There are a number of reasons as to why achieving consistent high-quality care and long-term longitudinal follow-up of individual patients with chronic conditions is challenging. First, in contrast to most acute illnesses, high-quality care of chronic conditions requires collaboration between multiple practitioners and continual follow-up over decades. Second, early changes in the status of a chronic condition does not typically manifest with obvious signs and symptoms. Third, over time, patients move locations, change insurance, and/or change doctors. Finally, data are accumulated at various service points with no central data repository.

As with other chronic conditions, there is a tendency to reduce surveillance of thyroid cancer over time following initial treatment. Notwithstanding the low lethality nature of thyroid cancer in the majority of patients, overly complacent follow-up intervals, poor communication within treatment teams, and inadequate management of consequences of treatment (e.g., iatrogenic hypothyroidism) may lead to preventable adverse events over long periods of time. Furthermore, the risk of developing recurrent disease continues throughout a patient's life. Based on long-term follow-up of historical cohorts, even patients with early stage disease can recur as late as 30 years after initial therapy and be associated with significant morbidity (11,12). This makes it imperative that surveillance strategies for thyroid cancer be appropriately tailored for individual risks and then maintained for suitably prolonged periods of time. Routine alerts and other prompts for patients and clinicians must be incorporated into any quality improvement protocol.

3. A poorly organized delivery system

Numerous studies in healthcare have concluded that higher volume is associated with better outcomes (13 –16), but why this occurs is still speculative. It is possible that practitioners and organizations that provide high volume care in specific fields have in place more effective processes, better methods for incorporating knowledge into practice, superior skill, effective multidisciplinary teams, and access to specialized resources. It may not be possible for a practitioner who sees only a handful of thyroid cancer patients each month to establish processes, create consistent teams, and incorporate the latest knowledge quickly and efficiently to every patient, every time.

For the majority of thyroid cancer practitioners in the United States, the communication process chain shown in Figure 3A is probably all too familiar. Telephone calls, faxes, and e-mails go back and forth, office to office, leaving patients and practitioners frustrated. Also, this results in delays in treatment and, in some cases, treatment decisions that are made with an excess of incomplete information. Furthermore, these communications are frequently done in a non-HIPAA compliant manner, and require that the patient be responsible for maintaining their records for dissemination to current and potentially future treating physicians. Consistent with this observation, the IOM observed that physician groups operate independently, often providing care without the benefit of sufficient information on the patient's condition or services provided in other settings.

FIG. 3.

The Thyroid Cancer Care Collaborative (TCCC) will change patient and provider communication from (A) the current model in most healthcare delivery to (B) the new model of communication between patients and multidisciplinary teams.

4. Constraints on exploiting the revolution in IT

Surely, every practitioner who has been frustrated with their health system has dreamed of ways that IT could improve their practice. Unfortunately, there are enormous barriers to entry for IT initiatives, making it difficult to create new applications and facilitate the adoption of even highly successful pioneering applications. The IOM identified technical, organizational, and policy challenges as factors limiting better exploitation of IT in healthcare.

Technical challenges include ensuring the security of personally identifiable information, authenticating data sources, and making tools available for efficiently locating information. Organizational challenges include taking advantage of new standards in communication languages amongst electronic medical records (EMRs) to allow seamless data flow from a variety of health systems' databases to populate data fields accurately. Policy challenges such as finding agreements between providers, payers, and service delivery organizations plague most innovative ideas in healthcare quality improvement.

Addressing problems in quality: the TCCC

One of the major conclusions of the IOM committee was that to initiate change, the healthcare system must develop care processes for conditions that afflict many people. To that end, three years ago, we embarked on an ambitious project to improve the quality of care in one of the most rapidly increasing chronic malignant conditions in the United States—thyroid cancer. With the resources afforded to a nonprofit foundation, independent of any individual practice or medical institution, we assembled a multidisciplinary team of key opinion leaders in thyroid cancer care, and created an online program—the TCCC.

Our mission was to create an innovative program that would improve the quality of thyroid cancer care now and into the future. Our main goals were to:

• enhance and facilitate the connectivity of clinicians involved in the care of a particular patient with thyroid cancer;

• improve the efficiency of physicians and their support staff;

• provide portable information for patients and their physicians in a HIPAA-compliant manner;

• empower patients as stakeholders by improving their understanding of the disease and the decisions being made in their care;

• create a robust database to support large-scale clinical research; and

• develop a cost-effective disease management tool to improve the quality of care.

The TCCC is a patient-centered web-based relational database and information program that integrates an individual's thyroid cancer data into a user-friendly centralized data repository. The database is designed with a simple user interface with separate modules that reflect the various points of care. These include initial presentation, imaging, surgical management, postoperative hospital course, surgical follow-up, pathology and staging, laboratory results, nuclear medicine, post-treatment surveillance, and change in health status.

Substantial investment was made to ensure the TCCC meets all HIPAA guidelines in terms of data security. All data are stored in a HIPAA-compliant hosting facility in an encrypted database, and the program enforces site-wide security (both at the server and browser level) ensuring that no unauthorized users have access to patient data. Furthermore, clinicians may only enter data on patients who have signed an informed consent to be a part of the TCCC, and only clinicians that are part of the care team explicitly chosen by the patient have access to that specific patient's data.

Data entry is performed by the physician at the point of care into the web-based program in the specific module in which they are involved. For example, following an operation, the surgeon would complete the “Surgical Management” module, which takes less than two minutes to complete and will autogenerate a narrative operative report that meets all ATA guidelines for high-quality operative reporting in thyroid cancer (17). For office visits, detailed and highly illustrated patient education and informed consent videos (with the physician available to supplement information and answer questions) will save the physician time and provide an opportunity to enter the specific data points related to their encounter in a rapid point-and-click system. This point-of-service data entry will improve the quality and completeness of data available for research, which is a known disadvantage of retrospective data abstraction methods used in current cancer databases. Accuracy of data entry is high because data are entered at the point of service by the clinical team, automatic alerts are generated for outlying data, and data are immediately available for review by all practitioners involved in the care of the patient. Integration of the TCCC into provider EMRs using a universal language is in active development.

The TCCC provides clinicians with the following services:

• instantaneous access to and enhanced communication of results of imaging, laboratory, pathology, and procedural notes related to their patients' diseases;

• automated disease staging for mortality based on three validated scoring systems (American Joint Commission on Cancer, AMES, and MACIS) (18 –20);

• automated disease staging for recurrence based on the ATA three-tiered scoring system (6);

• informed consent videos related to the most common procedures in the treatment of thyroid nodules and thyroid cancer;

• patient-personalized clinical decision-making modules (CDMMs) that bring the latest treatment recommendations to point of service delivery for each patient, allowing the aggressiveness of the treatment to be appropriately gauged to the aggressiveness of the individual's clinical condition;

• patient disease summary information that is immediately available when the physician logs on to review a specific patient's profile; and

• enhanced, facilitated, and time-saving connectivity among treating physicians. The TCCC provides patients with the following services:

• portable data related to their thyroid cancer care that can be shared with new physicians;

• highly illustrated and easy to understand educational videos on all aspects of thyroid nodules and thyroid cancer, written by leading experts in the field;

• access to the same CDMMs as physicians to improve understanding of recommendations being made in their treatment and follow-up; and

• availability of “virtual tumor boards,” “ask the expert,” and “frequently asked questions” modules.

For researchers, the TCCC is a repository of detailed information on every aspect of patients' diseases in an easily searchable format. The TCCC has great potential for large-scale data analyses on thyroid cancer because it can follow individual patients throughout the country, over time, with prospectively gathered data that can be easily queried. By creating a database that automatically accumulates data as part of the physician's normal workflow, the likelihood of maintaining replete data sets is greatly enhanced. Research is a cornerstone of the TCCC, and is part of the informed consent presented to all patients at the initial visit. While individual physicians have the ability to query aggregate data about their own patients, multiple-provider or multi-institution data queries using anonymous data require review and approval by a multidisciplinary research committee and either an independent or institution-linked ethics review board. The infrastructure for data queries is otherwise similar to current anonymous multi-institution cancer databases. As more data are collected and analyzed, we hope to reduce the number of recommendations in CPGs and clinical algorithms that are based on expert opinion alone.

How does the TCCC utilize IT to improve quality?

The IOM report said that IT should be a major contributor to improving the delivery of healthcare. The committee provided five ways to exploit IT maximally for quality improvement: (i) access to the medical knowledge base; (ii) computer-aided decision support systems; (iii) collection and sharing of information; (iv) reduction in errors; and (v) enhanced patient and clinician communication.

The TCCC utilizes IT to implement these five initiatives in a comprehensive way. First, the web-based TCCC is continually updated. Therefore, both clinicians and patients have unlimited access to current thyroid cancer information and clinical evidence. Medical information is provided in many formats, including more than 40 professionally narrated and illustrated patient education videos. Patient education videos have been shown to increase patient understanding (21,22), improve patient questioning (21), be a preferred method of disease education for patients (23), reduce clinician and staff education time, and offer a standardized approach to informed consent with the physician available to supplement information and answer questions, thereby offering the possibility of decreased physician liability (24). Using the list of available videos, providers can select which videos they want their patients to watch by creating a playlist. See Table 1 for complete list of Patient Education Video Modules in the TCCC.

Table 1.

List of Patient Education Videos Included in the Thyroid Cancer Care Collaborative (TCCC)

General	Surgical
Anatomy and Physiology of the Thyroid Gland	Hemithyroidectomy
Evaluation of Thyroid Nodules	Thyroidectomy
Understanding the Results of a FNA Biopsy	Central Compartment Lymph Node Surgery
Different Types of Thyroid Cancer: An Overview	Lateral Compartment Lymph Node Surgery
Management of Papillary and Follicular Thyroid Cancer	Monitoring of Vocal Cords During Thyroid Surgery
Management of Medullary Thyroid Cancer	Same Day Thyroidectomy Surgery
Staging of Thyroid Cancer	Hypocalcemia after Thyroid Surgery
Prognosis in Papillary and Follicular Thyroid Cancer	Radiation
Thyroid Cancer Spread to Lymph Nodes	Radioactive Iodine Therapy
Treatment of Metastatic Thyroid Cancer	Preparing for RAI Therapy: Iodine Deficient Diet
Timeline of Care After a Diagnosis of Thyroid Cancer	Preparing for RAI Therapy: Thyroid Hormone Withdrawal Versus rTSH Stimulation
First Degree Relatives and Thyroid Cancer: What the Patient and Family Should Know	Radioactive Iodine Therapy Immediately After Thyroid Surgery (Remnant Ablation)
Thyroid Hormone Replacement: T3 and T4 Hormones	Side Effects of Radioactive Iodine therapy
Clinical Trials in Thyroid Cancer Management	Role of External Beam Radiotherapy
Special topics	Surveillance
Introduction to the Clinical Decision Making Modules	Surveillance Strategies in Thyroid Cancer Follow-Up
Evaluation and Management of Thyroid Nodules During Pregnancy	Diagnostic Whole Body Imaging and Assessment of Response to Therapy
Evaluation and Management of Thyroid Cancer During Pregnancy	Response to Therapy and Re-Stratification of Patients with Differentiated Thyroid Cancer
Radioactive Iodine and Pregnancy	Role of Thyroid Stimulating Hormone Suppression
Informed consent
Informed Consent for Fine Needle Aspiration	Informed Consent for Radioactive Iodine Therapy
Informed Consent for Hemithyroidectomy	Informed Consent for Lateral and Central Compartment Lymph Node Removal
Informed Consent for Thyroidectomy	Informed Consent for Revision Lymph Node Surgery

These are highly illustrated videos, written by key opinion leaders in thyroid cancer care across the country, and presented in an unbiased fashion.

FNA, fine-needle aspiration; RAI, radioactive iodine; rTSH, recombinant thyroid stimulating hormone.

Second, the TCCC feeds all information from a patient's diagnostic and treatment history directly into a computer-aided decision support system for patients and physicians. It uses the latest evidence not only to alert practitioners when a clinical decision needs to be made, but also to outline the different options for managing a specific decision. The CDMMs are embedded into the system, and augment the physicians' knowledge and experience to apply the latest evidence base consistently. This is particularly important for community physicians or those who see thyroid cancer patients infrequently. The CDMMs that have been created include:

• need for remnant ablation;

• decision to perform a completion thyroidectomy;

• thyrotropin (TSH) suppression therapy: determining target TSH levels;

• routine surveillance with labs and imaging based on ATA risk of recurrence;

• management of recurrent/persistent metastatic lymph nodes;

• restratification of patients based on response to therapy and surveillance recommendations at 24 months;

• decision making for external beam radiotherapy;

• decision making to retreat with radioactive iodine;

• decision to obtain a positron emission tomography/computed tomography scan;

• decision making in referral for systemic therapy.

Third, the TCCC automatically feeds data into CDMMs. In addition, all providers are informed when new information or data are available for a patient. Furthermore, the system has all the information to help patients participate in virtual tumor boards and enroll in clinical trials. The TCCC imaging module collects information in such a way as to provide a clear, graphical portrayal of thyroid nodules that are sequentially imaged over time.

Fourth, the TCCC uses technology to minimize errors by ensuring all physicians have more data upon which to make treatment decisions, and by standardizing many treatment decisions based on the best available evidence using CDMMs. Also, automatic patient and provider alerts are sent when a surveillance test or follow-up appointment is due, when a clinical decision needs to be made, and when there is a change in health status that might impact treatment decisions such as level of thyroid suppression. Finally, the system is programmed such that outlying data points are automatically identified and physicians are alerted, thereby improving safety and ensuring accuracy of data entry.

Fifth, the TCCC aims to change the way clinicians communicate with each other by capitalizing on the power of the Internet for immediate, yet HIPAA-compliant, dissemination of information across practice sites and institutions, bypassing the need for shared medical records (Fig. 3B).

How does the TCCC meet the IOM's recommendations for quality improvement?

The IOM report stated that improved performance will require new system designs, and that such systems must serve the needs of patients (to ensure that they are fully informed, retain control, and participate in care delivery whenever possible), facilitate the application of current scientific knowledge, and give clinicians tools to deliver consistent and safe evidence-based care (3).

Of the 13 recommendations made by the IOM to improve the quality of healthcare delivery in the United States, three actionable recommendations were not directed not national agencies or payment and funding sources, but appeared as direct challenges to purchasers, healthcare organizations, and clinicians to redesign healthcare processes (Table 2) (3).

Table 2.

Summary of Institute of Medicine Recommendations to Improve the Quality of Healthcare in the United States

1	• All healthcare organizations, groups, and purchasers should make it their explicit purpose to reduce continually the burden of illness, injury, and disability, and to improve the health and functioning of the people of the United States.
2	• Healthcare organizations, groups, and purchasers should pursue six major aims ; specifically, healthcare should be: safe, effective, patient-centered, timely, efficient, and equitable.
3	• Congress should continue to appropriate funds for, and the HHS should move forward with, evaluating the progress of the health system in pursuit of the six major aims.
4	• Private and public purchasers, healthcare organizations, clinicians, and patients should work together to redesign healthcare processes in accordance with a set of 10 rules.
5	• The AHRQ should identify no fewer than 15 priority conditions, taking into account frequency of occurrence, health burden, and resource use. In collaboration with the NQF, the agency should convene stakeholders to develop strategies to achieve substantial improvements in quality for each of the priority conditions.
6	• Congress should establish a Health Care Quality Innovation Fund to support projects targeted at achieving the six aims, and resources should be invested in projects that will produce a public-domain portfolio of programs, tools, and technologies.
7	• The AHRQ and private foundations should convene workshops to identify and implement approaches to address challenges.
8	• HHS should be given the responsibility and resources to establish and maintain programs to make scientific evidence more useful and accessible to clinicians and patients.
9	• Government, healthcare leaders, purchasers, and health informatics associations should make a national commitment to an information infrastructure to support healthcare delivery, consumer health, quality measurement and improvement, public accountability, clinical and health services research, and clinical education. This commitment should lead to the elimination of most handwritten clinical data by the end of the decade.
10	• Purchasers should examine current payment methods to remove barriers that impede quality improvement, and to build in stronger incentives for quality enhancement.
11	• The Health Care Financing Administration and the AHRQ, with input from stakeholders, should develop a research agenda to identify, pilot test, and evaluate various options for better aligning payment methods with quality improvement goals.
12	• A multidisciplinary summit of leaders should be held to discuss and develop strategies to:
	○ restructure clinical education to be consistent with the principles of the 21st-century health system; and
	○ assess the implications of these changes for credentialing, funding, and sponsorship of education programs.
13	• The AHRQ should fund research to evaluate how the current regulatory and legal systems:
	○ facilitate or inhibit the changes needed for the 21st-century healthcare delivery system, and
	○ can be modified to support healthcare professionals and organizations that seek to accomplish the six aims.

The full text of these recommendations is available in the report.³ Recommendations in bold represent those that can be seen as a challenge to purchasers, healthcare organizations, and clinicians.

AHRQ, Agency for Healthcare Research and Quality; HHS, Department of Health and Human Services; NQF, National Quality Forum.

In Recommendation 1, the IOM asked these stakeholders to make it their purpose to reduce the burden of illness and improve the health and functioning of our citizens. This was indeed our purpose in the design of the TCCC.

In Recommendation 2, the IOM gave six major aims with regard to healthcare delivery in order to achieve quality improvement. Specifically, they wanted healthcare delivery to be:

• Efficient: The TCCC aims to reduce duplicated tests and will result in high-quality data collection by way of synoptic reporting in imaging, pathology, and surgical procedures.

• Timely: The TCCC aims to reduce delays in giving and receiving care by eliminating efforts in gathering results from different points of care in disparate health delivery systems.

• Effective: The TCCC aims to avoid underuse, overuse, and misuse of healthcare services by providing recommendations based on the best available scientific knowledge.

• Safe: The TCCC aims to promote safety by avoiding injuries to patients through a decrease in errors of data collection and treatment recommendations.

• Patient-centered: Because patients have access to information, education, and CDMMs, the TCCC aims to provide care that is respectful of patient preferences and includes them in decisions related to their care. Also, the CDMMs use data specific to the patient at hand to provide customized treatment and surveillance recommendations, taking into account an ongoing assessment of response to therapy.

• Equitable: The services offered by the TCCC are independent of personal characteristics such as race/ethnicity, geographic location, sex, and socioeconomic status. By empowering patients with quality information in one trusted location on the Internet, the TCCC aims to improve the information flow to patients who might otherwise have restricted access to expert physicians. By giving patients access to “ask the experts” and “virtual tumor boards,” as well as exposure to less common therapies such as external beam radiotherapy and an awareness of open clinical trials, the TCCC can bring tertiary-level care to people all over the country.

In Recommendation 4, the IOM provided a set of 10 rules upon which to base a redesign of healthcare processes. Table 3 summarizes many of the key features of the TCCC, and shows how the program follows the IOM rules (3,25).

Table 3.

Examples of how the TCCC Addresses the IOM's 10 Rules for System Redesign to Improve the Quality of Healthcare Delivery Comparing the Current System with the Proposed New System ^3,25

1	• Current system: Care is based primarily on physician visits	New system: Care is based on continuous healing relationships
	○ Patient care and information is provided in many forms, not just face-to-face visits.
	○ Data are available to patients online 24 hours a day, every day.
	○ Educational videos selected by the provider for the individual patient can be reviewed at home as many times as desired.
	○ Frequently asked questions with answers are provided for patients at any time.
	○ Clinicians can spend more time speaking with patients, instead of organizing and accumulating data from various sources to make decisions.
2	• Current system: Professional autonomy drives variability	New system: Customization is based on patient needs and values
	○ Promotes customized care including virtual tumor boards, ask the experts, and awareness of open clinical trials.
	○ Patient-specific data are continuously fed into the system, and customized CDMMs are provided to the patient as well as the clinician.
	○ Changes in health status alerts (e.g., new onset atrial fibrillation) are sent to all providers and may trigger treatment changes.
	○ Automatic disease staging is provided for all patients, resulting in right-sizing treatment to the individual patient.
	○ Response to therapy is calculated on an ongoing basis upon which a customized surveillance strategy is recommended.
	○ Clinical care providers select patient education videos relevant to a specific patient.
	○ Where choices are possible based on current evidence, the TCCC offers patients information on benefits and risks of different treatment options.
3	• Current system: Professionals control care	New system: The patient as the source of control
	○ Patients have unlimited access to their medical data, highly illustrated educational videos, and the same evidence-based guidelines as their physicians.
	○ Patients are not forced to share in decision making, but they can exercise the degree of control that they desire.
	○ Patients have access to information about decisions in all major steps of their thyroid cancer care.
4	• Current system: Information is a record	New system: Shared knowledge and free flow of information
	○ The HIPAA-compliant web-based system breaks down barriers for patients to share in their medical data.
	○ Educational tools and glossaries help patients understand their medical information.
	○ CDMMs allow patients to understand why decisions are being made along their cancer journey.
	○ Informed consent videos are thorough and can be watched multiple times at the patient's convenience.
5	• Current system: Decision making is based on training and experience	New system: Evidence-based decision making
	○ Using CDMMs, the TCCC offers patients care that does not vary illogically from clinician to clinician or from place to place.
	○ Brings NCCN and ATA guidelines (using patient specific data) directly in front of the provider and patient at the point of service delivery.
6	• Current system: Do no harm is an individual responsibility	New system: Safety as a system property
	○ Reduces risk of errors inputting results into health records.
	○ Standardizes many treatment decisions based on the best available evidence using CDMMs, thereby reducing administration of treatments inconsistent with current recommendations.
	○ Minimizes clinician errors by providing a more data upon which to make treatment decisions.
	○ Provides portable data accessible to healthcare providers regardless of location or health system.
	○ Gives the ability to analyze why variations from recommended treatment decisions occur in select cases.
	○ Permits the study of errors in diagnosis, treatment, and surveillance and can thus introduce methods to prevent future errors.
	○ All caregivers involved with a particular patient are alerted to new information including lab values, imaging, and pathology allowing for immediate review.
	○ Lab values that are outside a normal range are highlighted and alerts are sent to all caregivers.
7	• Current system: Secrecy is necessary	New system: The need for transparency
	○ Transparency of all medical data and decisions.
	○ Patients can recognize outdated and wrong information.
	○ Patients can share in providing information that affects their care.
	○ Offers great portability of information, and all known details of the disease can be given to another physician instantaneously.
8	• Current system: The system reacts to needs	New system: Anticipation of needs
	○ Offers more than 40 patient education videos on topics patients will have questions about, including informed consent for common procedures, surgeries, and treatments.
	○ Promotes a proactive approach to care and surveillance (as opposed to reactive) with automatic reminders sent to patients and practitioners when clinical decisions need to be made, surveillance tests are due to be ordered, or follow-up appointments are required.
9	• Current system: Cost reduction is sought	New system: Continuous decrease in waste
	○ Data are centralized and will limit overuse (duplicate imaging, laboratory levels, and biopsies).
	○ CDMMs on the appropriate use of certain imaging (e.g., PET-CT) will help to reduce the overuse of expensive imaging tools.
	○ By appropriately recommending radioiodine therapy for patients who will benefit from it, the cost and potential injury of overuse is reduced.
	○ System data allow for automatic assessment of response to therapy, and provide patients and providers with recommended level of surveillance testing.
10	• Current system: Preference is given to professional roles over the system	New system: Cooperation among clinicians
	○ Active collaboration and communication amongst the team of physicians treating a patient with thyroid cancer is built into the system.
	○ Patients choose their team of thyroid cancer practitioners, all of whom have instant access to all data related to their disease.
	○ New physicians will have immediate access to all thyroid cancer-related data if patients move or change insurance.
	○ Ability to hold virtual tumor boards with TCCC consultants on difficult cases.
	○ Avoidance of duplicated tests.

CDMMs, Clinical Decision Making Modules; HIPAA, Health Information and Portability and Accountability Act; PET-CT, positron emission tomography/computed tomography.

Summary

The TCCC is an innovative program that utilizes IT to redesign the system of providing care to patients with thyroid cancer. We believe it offers significant quality advantages to patients, practitioners, and researchers involved with thyroid cancer. The TCCC offers care that is patient-centered, efficient, timely, effective, safe, equitable, and cost effective. It addresses the three recommendations and challenges made directly to clinicians by the IOM in their landmark report on quality in healthcare, and thus fits squarely in a larger and overhauled healthcare delivery system. Furthermore, the TCCC is a valuable example of how IOM initiatives can improve the healthcare system.

Conclusion

Three main goals remain with the TCCC. First, through a patient- and clinician-driven approach, we hope to increase participation and penetration steadily into the workflow of physicians who treat patients with thyroid cancer across the United States. Second, we continue to strive to increase the interoperability of the TCCC with existing commonly used electronic medical records to reduce or eliminate the duplication of physician effort in data entry. Third, we would like to open data extraction to researchers to perform comparative effectiveness research and epidemiological analysis to answer important questions to improve the treatment of thyroid cancer. A demonstration of the TCCC can be found online at www.thyroidccc.org/intro

Footnotes

Acknowledgment

The authors acknowledge administrative support from the Thyroid Head and Neck Cancer (THANC) Foundation.

Author Disclosure Statement

No competing financial interests exist.

References

National Research Council. 1999. Ensuring Quality Cancer Care. National Academies Press, Washington, DC.

Statement of Carolyn Clancy before the Committee on Finance, Subcommittee on Health Care, U.S. Senate made on March 18, 2009. What is health care quality and who decides? Available at: www.hhs.gov/asl/testify/2009/03/3716.html (accessed December 15, 2012 ).

National Research Council. 2001. Crossing the Quality Chasm: A New Health System for the 21st Century. National Academies Press, Washington, DC.

Simard

, Ward

, Siegel

, Jemal

. 2012. Cancers with increasing incidence trends in the United States: 1999 through 2008. CA Cancer J Clin, 62:118–128.

National Comprehensive Cancer Network, Inc.. 2013. Clinical practice guidelines in oncology—thyroid carcinoma v1.2013. Available at: www.nccn.org (accessed March 15, 2013 ).

Cooper

, Doherty

, Haugen

, Kloos

, Lee

, Mandel

, Mazzaferri

, McIver

, Pacini

, Schlumberger

, Sherman

, Steward

, Tuttle

; American Thyroid Association Guidelines Taskforce on Thyroid Nodules and Differentiated Thyroid Cancer. 2009. Revised American Thyroid Association management guidelines for patients with thyroid nodules and differentiated thyroid cancer. Thyroid, 19:1167–1214.

Chassin

, Galvin

. 1998. National roundtable on health care quality. The urgent need to improve health care quality: Institute of Medicine National Roundtable on Health Care Quality. JAMA, 280:1000–1005.

National Cancer Institute. Thyroid cancer home page. Available at: www.cancer.gov/cancertopics/types/thyroid (accessed March 2, 2013 ).

National Cancer Institute. 2013. SEER cancer statistics review, 1975–2010, Table 26.5. Available at http://seer.cancer.gov/csr/1975_2010/ (accessed August 1, 2013 ).

10.

Chen

, Jemal

, Ward

. 2009. Increasing incidence of differentiated thyroid cancer in the United States, 1988–2005. Cancer, 115:3801–3807.

11.

Hay

, Thompson

, Grant

, Bergstralh

, Dvorak

, Gorman

, Maurer

, McIver

, Mullan

, Oberg

, Powell

, van Heerden

, Goellner

. 2002. Papillary thyroid carcinoma managed at the Mayo Clinic during six decades (1940–1999): temporal trends in initial therapy and long-term outcome in 2444 consecutively treated patients. World J Surg, 26:879–885.

12.

Mazzaferri

, Jhiang

. 1994. Long-term impact of initial surgical and medical therapy on papillary and follicular thyroid cancer. Am J Med, 97:418–428.

13.

Chen

, Fedewa

, Pavluck

, Ward

. 2010. Improved survival is associated with treatment at high-volume teaching facilities for patients with advanced stage laryngeal cancer. Cancer, 116:4744–4752.

14.

Joynt

, Orav

, Jha

. 2011. The association between hospital volume and processes, outcomes, and costs of care for congestive heart failure. Ann Intern Med, 154:94–102.

15.

Stavrakis

, Ituarte

, Ko

, Yeh

. 2007. Surgeon volume as a predictor of outcomes in inpatient and outpatient endocrine surgery. Surgery, 142:887–899.

16.

Hillner

, Smith

, Desch

. 2000. Hospital and physician volume or specialization and outcomes in cancer treatment: importance in quality of cancer care. J Clin Oncol, 18:2327–2340.

17.

Carty

, Doherty

, Inabnet

3rd , Pasieka

, Randolph

, Shaha

, Terris

, Tufano

, Tuttle

, Surgical Affairs Committee of the American Thyroid Association. 2012. American Thyroid Association statement on the essential elements of interdisciplinary communication of perioperative information for patients undergoing thyroid cancer surgery. Thyroid, 22:395–399.

18.

Edge

, Byrd

, Compton

. 2009. AJCC Cancer Staging Manual. Seventh edition. Springer, New York, New York.

19.

Cady

, Rossi

. 1988. An expanded view of risk-group definition in differentiated thyroid carcinoma. Surgery, 104:947–953.

20.

Hay

, Bergstralh

, Goeller

, Ebersold

, Grant

. 1993. Predicting outcome in papillary thyroid carcinoma: development of a reliable prognostic scoring system in a cohort of 1779 patients surgically treated at one institution during 1940 through 1989. Surgery, 114:1050–1070.

21.

Hazen

, Eder

, Drotar

, Zyzanski

, Reynolds

, Kodish

, Noll

; Multi-Site Intervention Study to Improve Consent Research Team. 2010. A feasibility trial of a video intervention to improve informed consent for parents of children with leukemia. Pediatr Blood Cancer, 55:113–118.

22.

Hung

, Huang

, Yu

. 2011. An empirical study of the effectiveness of multimedia disclosure of informed consent: a technology mediated learning perspective. Inform Manag, 48:135–144.

23.

Migden

, Chavez-Frazier

, Nguyen

. 2008. The use of high definition video modules for delivery of informed consent and wound care education in the Mohs Surgery Unit. Semin Cutan Med Surg, 27:89–93.

24.

Mulsow

JJW

, Feeley

, Tierney

. 2012. Beyond consent—improving understanding in surgical patients. Am J Surg, 203:112–120.

25.

Berwick

. 2002. A user's manual for the IOM's “quality chasm” report. Heath Affairs, 21:80–90.