Commentary
Cancer Registry Data: Engaging the Clinician to Improve Quality Elliot A. Asare, MD1,2; Donna M. Gress, RHIT, CTR3; Frederick L. Greene, MD4; and David P. Winchester, MD1
The emphasis on patient, clinician, and hospital outcomes in the modern era has led to an increasing need for even more data in health care. Robust studies are needed to provide the highest level of evidence to inform medical care. As clinician and hospital reimbursements become increasingly tied to clinical outcomes,1 it is imperative that we have accurate and adequate data on pertinent variables to ensure that policies are well informed. Cancer registries such as the National Cancer Data Base (NCDB) of the Commission on Cancer (CoC), the National Program of Cancer Registries of the Centers for Disease Control and Prevention, and the Surveillance, Epidemiology, and End Results database of the National Cancer Institute provide invaluable surveillance and outcomes data for cancer patients in the United States. Data abstraction into cancer registries is performed by registrars, who are specially trained personnel equipped with the knowledge and tools to abstract pertinent information from the medical records of all patients diagnosed with cancer in the United States.2 The Facility Oncology Registry Data Standards (FORDS) manual is a critical reference tool used for the abstraction of data on cancer patients in the United States. The FORDS manual, originally published by the CoC in 2002, contains all the data items, codes, and rules to abstract data into registries at participating CoC hospitals. Although some data items appearing in the FORDS manual are not collected in the NCDB, those items collected and reported by CoC-accredited institutions must use the standard coding appearing in the FORDS manual. Data from all CoC-accredited hospitals are abstracted into the NCDB. The FORDS manual is relevant to clinicians and researchers because it determines what information is abstracted into the NCDB and thus strongly influences the scope and quality of clinical studies. Jointly established and managed by the CoC of the American College of Surgeons and the American Cancer Society since 1989, the NCDB seeks to 1) explore trends in cancer care, 2) create regional and state benchmarks for participating hospitals, and 3) serve as the basis for quality improvement.3 In addition to the aforementioned goals, the NCDB has served as the source of data for countless peer-reviewed studies. Approximately 70% of all newly diagnosed cancers from more than 1500 CoC-accredited hospitals in the United States are captured in this database.4 The wide geographic reach of the NCDB, the large sample size, and the range of hospital types make it a viable alternative to institutional or clinical trial data as a source of data for answering some research questions. Because of the rapidly changing pace of oncology care, some of the codes and variables defined for abstraction in the FORDS manual are not always in synchrony with current clinical practice. Pertinent variables that would offer insight into outcomes of current treatment paradigms, such as hyperthermic intraperitoneal chemotherapy for mucinous appendiceal neoplasms and the type of chemotherapy agent administered, are not collected. In addition, important data elements such as histopathologic features and quality-of-life scores are not available for most disease sites. The lack of data for some pertinent variables limits the scope of outcomes analyses that can be performed, and this leaves researchers to resort to institutional or clinical trial data, which are most often not representative of the real world. Collecting data on variables that will remain relevant over time is also a challenge faced by registries. Registry data are by definition retrospective, and significant changes in clinical care such as the introduction of new procedures, new medications, or new definitions can make the previously accrued data obsolete. For example, the 2009 American Thyroid
Corresponding author: Elliot A. Asare, MD, Cancer Programs, American College of Surgeons, 633 North St. Clair Street, 22nd Floor, Chicago, IL 60611; Fax: (312) 202-5011; [email protected] 1 Cancer Programs, American College of Surgeons, Chicago, Illinois; 2Department of Surgery, Medical College of Wisconsin, Milwaukee, Wisconsin; 3American Joint Committee on Cancer, Chicago, Illinois; 4Levine Cancer Institute, Charlotte, North Carolina
DOI: 10.1002/cncr.29483, Received: March 31, 2015; Revised: May 1, 2015; Accepted: May 8, 2015, Published online May 27, 2015 in Wiley Online Library (wileyonlinelibrary.com)
2866
Cancer
September 1, 2015
Improving Cancer Registry Data/Asare et al
Association consensus statement on the terminology and classification of central neck dissection for thyroid cancer stipulates that “central neck dissection should at a minimum include pretracheal, prelaryngeal and paratracheal nodes,” and it further calls for documentation about whether the dissection is therapeutic or prophylactic and about the extent of the dissection (unilateral or bilateral).5 This consensus statement will ensure uniformity in data collection and interpretation of analysis. However, registry data on central neck dissection that predate the adoption and implementation of the American Thyroid Association consensus statement will not be as informative because of the heterogeneity in definitions. This example illustrates the need for clinicians to actively participate in deciding what variables to collect and what standard definitions to use for data abstracted into cancer registries. Actively engaged clinicians may be able to alert the registry community in a timely manner to changes that need to be made to data items to ensure that pertinent data are collected. In an effort to improve the quality of cancer registry data, the CoC launched the FORDS revision project, which seeks to critically revise and update the FORDS manual.6 Since its inception in 2002, this current revision of the FORDS manual is the most far-reaching because it seeks to engage the broader community of people involved in cancer care, cancer research, and cancer data management. Spearheaded by one of us (F.L.G.), this effort is reaching out to cancer clinicians, registrars, and other users of cancer registry data to suggest 1) the elimination of data items that are no longer clinically relevant, 2) new clinically relevant data items for collection, or 3) changes to an existing data item. Electronic surveys for the FORDS revision project were opened in May 2014 and closed in early 2015, with 850 surveys received. The revision of the FORDS manual coincides with ongoing work by members of the expert panels convened for the 8th edition of the American Joint Committee on Cancer staging system, and thus clinicians and researchers for the various disease sites have been engaged. This is an opportunity for cancer care clinicians to ensure that pertinent variables that need to be analyzed to inform practice and policy will be abstracted into the NCDB. In addition, primary investigators who are leading several Patient-Centered Outcomes Research Institute initiatives to evaluate
Cancer
September 1, 2015
surveillance in breast, colon, and lung cancer have been included as clinician-consultants in the FORDS revision process. Bridging the gap between clinicians and registrars is critically important to improving the quality of registry data. Clinician participation in determining which variables are collected into registries will ensure that clinically relevant data are included and that obsolete data are omitted. It will also allow clinicians to hold a greater stake in the data collection process, which might provide an incentive to better document patient information in medical records and thereby reduce the amount of missing patient data. Routine dialogue between clinicians and registrars could be facilitated by the identification of a clinician to serve as the registry data advocate, who would act as a liaison at participating institutions to guide cancer registrars in their work. The results of our analyzed health care outcomes are only as good as our input data. Active clinician engagement in cancer data collection efforts will improve the quality of registry data. The FORDS revision project of the CoC is promoting such an endeavor. FUNDING SUPPORT Elliot A. Asare was supported by the Clinical Scholars-in-Residence Program of the American College of Surgeons.
CONFLICT OF INTEREST DISCLOSURES The authors made no disclosure.
REFERENCES 1. Langdown C, Peckham S. The use of financial incentives to help improve health outcomes: is the quality and outcomes framework fit for purpose? A systematic review. J Public Health (Oxf). 2014;36: 251-258. 2. National Cancer Registrars Association. http://www.ncra-usa.org/i4a/ pages/index.cfm?pageid51. Accessed April 21, 2015. 3. American College of Surgeons. About the National Cancer Data Base. https://www.facs.org/quality-programs/cancer/ncdb/about. Accessed March 23, 2015. 4. Bilimoria KY, Stewart AK, Winchester DP, Ko CY. The National Cancer Data Base: a powerful initiative to improve cancer care in the United States. Ann Surg Oncol. 2008;15:683-690. 5. Carty SE, Cooper DS, Doherty GM, et al. Consensus statement on the terminology and classification of central neck dissection for thyroid cancer. Thyroid. 2009;19:1153-1158. 6. Greene FL, Tedder P, Gress D. Revision of the Facility Oncology Registry Data Standards (FORDS) manual—a look to the future. J Regist Manage. 2014;41:209.
2867
Cancer Registry Data: Engaging the Clinician to Improve Quality Elliot A. Asare, MD1,2; Donna M. Gress, RHIT, CTR3; Frederick L. Greene, MD4; and David P. Winchester, MD1
The emphasis on patient, clinician, and hospital outcomes in the modern era has led to an increasing need for even more data in health care. Robust studies are needed to provide the highest level of evidence to inform medical care. As clinician and hospital reimbursements become increasingly tied to clinical outcomes,1 it is imperative that we have accurate and adequate data on pertinent variables to ensure that policies are well informed. Cancer registries such as the National Cancer Data Base (NCDB) of the Commission on Cancer (CoC), the National Program of Cancer Registries of the Centers for Disease Control and Prevention, and the Surveillance, Epidemiology, and End Results database of the National Cancer Institute provide invaluable surveillance and outcomes data for cancer patients in the United States. Data abstraction into cancer registries is performed by registrars, who are specially trained personnel equipped with the knowledge and tools to abstract pertinent information from the medical records of all patients diagnosed with cancer in the United States.2 The Facility Oncology Registry Data Standards (FORDS) manual is a critical reference tool used for the abstraction of data on cancer patients in the United States. The FORDS manual, originally published by the CoC in 2002, contains all the data items, codes, and rules to abstract data into registries at participating CoC hospitals. Although some data items appearing in the FORDS manual are not collected in the NCDB, those items collected and reported by CoC-accredited institutions must use the standard coding appearing in the FORDS manual. Data from all CoC-accredited hospitals are abstracted into the NCDB. The FORDS manual is relevant to clinicians and researchers because it determines what information is abstracted into the NCDB and thus strongly influences the scope and quality of clinical studies. Jointly established and managed by the CoC of the American College of Surgeons and the American Cancer Society since 1989, the NCDB seeks to 1) explore trends in cancer care, 2) create regional and state benchmarks for participating hospitals, and 3) serve as the basis for quality improvement.3 In addition to the aforementioned goals, the NCDB has served as the source of data for countless peer-reviewed studies. Approximately 70% of all newly diagnosed cancers from more than 1500 CoC-accredited hospitals in the United States are captured in this database.4 The wide geographic reach of the NCDB, the large sample size, and the range of hospital types make it a viable alternative to institutional or clinical trial data as a source of data for answering some research questions. Because of the rapidly changing pace of oncology care, some of the codes and variables defined for abstraction in the FORDS manual are not always in synchrony with current clinical practice. Pertinent variables that would offer insight into outcomes of current treatment paradigms, such as hyperthermic intraperitoneal chemotherapy for mucinous appendiceal neoplasms and the type of chemotherapy agent administered, are not collected. In addition, important data elements such as histopathologic features and quality-of-life scores are not available for most disease sites. The lack of data for some pertinent variables limits the scope of outcomes analyses that can be performed, and this leaves researchers to resort to institutional or clinical trial data, which are most often not representative of the real world. Collecting data on variables that will remain relevant over time is also a challenge faced by registries. Registry data are by definition retrospective, and significant changes in clinical care such as the introduction of new procedures, new medications, or new definitions can make the previously accrued data obsolete. For example, the 2009 American Thyroid
Corresponding author: Elliot A. Asare, MD, Cancer Programs, American College of Surgeons, 633 North St. Clair Street, 22nd Floor, Chicago, IL 60611; Fax: (312) 202-5011; [email protected] 1 Cancer Programs, American College of Surgeons, Chicago, Illinois; 2Department of Surgery, Medical College of Wisconsin, Milwaukee, Wisconsin; 3American Joint Committee on Cancer, Chicago, Illinois; 4Levine Cancer Institute, Charlotte, North Carolina
DOI: 10.1002/cncr.29483, Received: March 31, 2015; Revised: May 1, 2015; Accepted: May 8, 2015, Published online May 27, 2015 in Wiley Online Library (wileyonlinelibrary.com)
2866
Cancer
September 1, 2015
Improving Cancer Registry Data/Asare et al
Association consensus statement on the terminology and classification of central neck dissection for thyroid cancer stipulates that “central neck dissection should at a minimum include pretracheal, prelaryngeal and paratracheal nodes,” and it further calls for documentation about whether the dissection is therapeutic or prophylactic and about the extent of the dissection (unilateral or bilateral).5 This consensus statement will ensure uniformity in data collection and interpretation of analysis. However, registry data on central neck dissection that predate the adoption and implementation of the American Thyroid Association consensus statement will not be as informative because of the heterogeneity in definitions. This example illustrates the need for clinicians to actively participate in deciding what variables to collect and what standard definitions to use for data abstracted into cancer registries. Actively engaged clinicians may be able to alert the registry community in a timely manner to changes that need to be made to data items to ensure that pertinent data are collected. In an effort to improve the quality of cancer registry data, the CoC launched the FORDS revision project, which seeks to critically revise and update the FORDS manual.6 Since its inception in 2002, this current revision of the FORDS manual is the most far-reaching because it seeks to engage the broader community of people involved in cancer care, cancer research, and cancer data management. Spearheaded by one of us (F.L.G.), this effort is reaching out to cancer clinicians, registrars, and other users of cancer registry data to suggest 1) the elimination of data items that are no longer clinically relevant, 2) new clinically relevant data items for collection, or 3) changes to an existing data item. Electronic surveys for the FORDS revision project were opened in May 2014 and closed in early 2015, with 850 surveys received. The revision of the FORDS manual coincides with ongoing work by members of the expert panels convened for the 8th edition of the American Joint Committee on Cancer staging system, and thus clinicians and researchers for the various disease sites have been engaged. This is an opportunity for cancer care clinicians to ensure that pertinent variables that need to be analyzed to inform practice and policy will be abstracted into the NCDB. In addition, primary investigators who are leading several Patient-Centered Outcomes Research Institute initiatives to evaluate
Cancer
September 1, 2015
surveillance in breast, colon, and lung cancer have been included as clinician-consultants in the FORDS revision process. Bridging the gap between clinicians and registrars is critically important to improving the quality of registry data. Clinician participation in determining which variables are collected into registries will ensure that clinically relevant data are included and that obsolete data are omitted. It will also allow clinicians to hold a greater stake in the data collection process, which might provide an incentive to better document patient information in medical records and thereby reduce the amount of missing patient data. Routine dialogue between clinicians and registrars could be facilitated by the identification of a clinician to serve as the registry data advocate, who would act as a liaison at participating institutions to guide cancer registrars in their work. The results of our analyzed health care outcomes are only as good as our input data. Active clinician engagement in cancer data collection efforts will improve the quality of registry data. The FORDS revision project of the CoC is promoting such an endeavor. FUNDING SUPPORT Elliot A. Asare was supported by the Clinical Scholars-in-Residence Program of the American College of Surgeons.
CONFLICT OF INTEREST DISCLOSURES The authors made no disclosure.
REFERENCES 1. Langdown C, Peckham S. The use of financial incentives to help improve health outcomes: is the quality and outcomes framework fit for purpose? A systematic review. J Public Health (Oxf). 2014;36: 251-258. 2. National Cancer Registrars Association. http://www.ncra-usa.org/i4a/ pages/index.cfm?pageid51. Accessed April 21, 2015. 3. American College of Surgeons. About the National Cancer Data Base. https://www.facs.org/quality-programs/cancer/ncdb/about. Accessed March 23, 2015. 4. Bilimoria KY, Stewart AK, Winchester DP, Ko CY. The National Cancer Data Base: a powerful initiative to improve cancer care in the United States. Ann Surg Oncol. 2008;15:683-690. 5. Carty SE, Cooper DS, Doherty GM, et al. Consensus statement on the terminology and classification of central neck dissection for thyroid cancer. Thyroid. 2009;19:1153-1158. 6. Greene FL, Tedder P, Gress D. Revision of the Facility Oncology Registry Data Standards (FORDS) manual—a look to the future. J Regist Manage. 2014;41:209.
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