CRM Course 1
NAACCR
- established in 1987 - establishes and maintains a consensus on standards for cancer registration in North America - trains and educates cancer surveillance professionals - certifies registries that achieve data quality standards - aggregates annual data from population-based registries throughout the U.S. and Canada. - promotes the use of cancer registry data in surveillance, cancer control, and population-based research.
Basic Data Items for CCRs
- patient demographics - cancer identification - hospital-specific (admission dates, class and analytic status) data - stage and prognostic factors - treatment- first course and subsequent - follow-up - death - edit overrides - system administration ( case completed, changed) - patient, hospital and physician - narrative text
Aggregate data
Aggregate data, which contains non-confidential information, may be released if allowed by organizational policies and procedures. When in doubt, do not release without speaking with a person in authority at the institution such as the privacy officer. It is better to delay releasing information than to release information that could do harm. Policies and procedures may allow the release of confidential patient information to: •Other treating hospitals for follow-up or case completion •Physicians for their own patients •The state or central cancer registry Polices and procedures must be approved by the cancer committee and should certainly be reviewed by the privacy officer. The registry should try to identify areas where there is a risk of violating confidentiality and be sure that the policies and procedures address those areas. The registry is responsible for monitoring the release of confidential information and accounting for disclosures. For patient information in both electronic and paper formats to remain confidential, it must be kept secure. The registry should have locks and an alarm system. Registry computers should require passwords and an audit system that logs all attempts to enter the database. The use of strong passwords should be encouraged such as those that do not form real words but do contain a combination of upper and lower case letters, numbers, and at least one special character such as !, #, $, or %. Confidential information may be transmitted electronically if the data is encrypted and is being transmitted to those authorized to receive it such as the central cancer registry. For guidance, registrars can work with the facility Security Officer to ensure all aspects of the HIPAA Security Rule are implemented correctly. Policy and procedures for security should include information concerning: •Physical safeguards •Remote access •Disposal of confidential information
FORDS
Facility Oncology Registry Data Standards Revised for 2010 developed by CoC
How does HIPAA impact the data collection of non-reportable/benign diseases (i.e. benign brain, CIN III, Co-morbid conditions)?
HIPAA does not obstruct any state law that supports or mandates the reporting of any disease.
What, if any, are the consequences of not cooperating with state cancer registry requests for new cancer case information?
HIPAA does not obstruct any state law that supports or mandates the reporting of diseases or injury for public health purposes. Penalties for failing to comply with state reporting are specified in the state law and often consist of significant fines.
Standard Setting Organizations
NAACCR WHO SEER NPCR CoC
Who investigates any charges of unethical or alleged violations?
NCRA Ethics Committee
WHO
Since it was first published in 1976, the International Classification of published ICD-O which has been internationally recognized as the definitive classification of neoplasms. It is used by cancer registries throughout the world to record incidence of malignancy and survival rates, and the data produced are used to inform cancer control, research activity, treatment planning and health economics. ICD-O consists of two axes (or coding systems), which together describe the tumour: ◦the topographical code, which describes the anatomical site of origin (or organ system) of the tumour, and ◦the morphological code, which describes the cell type (or histology) of the tumour, together with the behaviour (malignant or benign).
tort
a civil law which is a wrongful act committed against another resulting in injury
The enactment of the Benign Brain Tumor Cancer Registries Amendment Act is an example of why registrars need to be aware not only of pertinent new legislation but also of amendments to existing legislation
True
legislative mandates
federal and state requires reporting in all 50 states specifies operational requirements provides a process for determining compliance establishes funding
Analytic Cases
class of case cases that were diagnoses and received their entire first course of treatment at the reporting hospital
Staffing
composition and number depends on goals, caseload, nature of data collection process, geographic area and population covered, longevity of the database, managerial and administrative responsibilities, computerization and cancer program functions May include: Medical Director / Epidemiologist Registry / Project Manager Office/Accounts Manager Abstractors Quality Control Data Processing / IT Personnel Statistician Coding Research Analyst Data Entry Secretarial /Clerical
What guideline is appropriate for providing lists of patients for marketing purposes?
confidentiality and privacy
Reference Date
starting date usually January 1 of a given year on or after all cases diagnosed must be included in the registry
T or F...It is appropriate to access the medical records of your sister if you are concerned about her cancer treatment.
false
The cancer registry professional has no responsibility in providing training and clinical experience to students or other professionals.
false
Under what circumstances can confidential cancer registry data be made available?
to provide follow-up information to an approved facility
NPCR and SEER
together collects data for the entire US population major funding sources for US central registries
T or F...In addition to following federal & state legal requirements concerning patient confidentiality, the cancer registrar must also be aware of pertinent regulations formulated by their own institution.
true
T or F...The most serious consequence of a finding of guilt of an ethics violation is revocation of the CTR credential.
true
T or F...Use of the CTR credential is reserved for those individuals who have been awarded the credential?
true
The NCRA adopted a Professional Practice Code of Ethics that outlines the principles professional conduct & provides members of the assoc. w/definitive & binding guidelines of conduct.
true
Placing material gain ahead of service in not unethical.
false
What guideline is appropriate for revocation of the CTR credential?
breach of ethical conduct sanction
T or F... A serious breach of confidentiality can result in the cancer registrar being fired.
true
T or F...A serious breach of confidentiality can result in the facility being fined thousands of dollars.
true
T or F...Another area covered by HIPAA's provisions includes the accuracy of record keeping.
true
*Never release confidential registry data for: *Policies and procedures may allow the release of confidential patient information to:
*Never release confidential registry data for: •Marketing •Recruiting patients by healthcare facilities or providers •Aiding insurance companies in their decisions to insure •Aiding employers or potential employers •Publishing or for the press •Granting a request from the general public *Policies and procedures may allow the release of confidential patient information to: •Other treating hospitals for follow-up or case completion •Physicians for their own patients •The state or central cancer registry
What information is required for a covered entity to meet the Privacy Rule's verification requirements with respect to reporting information about cases of cancer to the state cancer registry?
1. The Privacy Rule requires covered entities to verify a requester's identity before disclosing protected health information. 45 CFR 164.514(h)(1)(i) 2. In the case of disclosure to a person acting on behalf of a public official, a covered entity that reasonably relies on a written statement on appropriate government letterhead that the requester is acting under the government's authority will fulfill this requirement. 45 CFR 164.514(h)(2)(ii)(C) 3. The Privacy Rule also requires covered entities to verify the requester's authority. 45 CFR 164.514(h)(1)(i) 4. A covered entity that reasonably relies on a written statement of the legal authority under which the information is requested will fulfill this requirement. 45 CFR 164.514(h)(2)(iii)(A) To assist covered entities in meeting the verification requirements, the state cancer registry may elect to provide a written statement to cancer reporting facilities with the aforementioned information.
Scope of summarized health information
Cancer registries contain summarized health information for all cancer patients within the scope of their service areas. For the hospital registry, the scope is all patients diagnosed or treated at the facility. For the state or regional cancer registry, the scope is all cancer patients within their defined borders or state boundary. The summarized health information includes patient identification, detailed medical histories, and treatment information.
Such agencies (Public Health Authority) are authorized by law to collect or receive such information for the purposes of preventing or controlling disease, injury, vital events such as birth or death, and the conduct of public health surveillance, public health investigations, and public health interventions."
Central cancer registries are considered public health authorities because state laws mandate their duties.
NCRA
Chartered in 1974, the National chartered in 1974 a non-profit organization that represents more than 5,800 cancer registry professionals and Certified Tumor Registrars (CTR®) Its mission is to serve as the premier education, credentialing, and advocacy resource for cancer data professionals.
Collaborative Staging
Collaborative Stage is a unified data collection system designed to provide a common data set to meet the needs of all three staging systems: TNM, SEER Extent of Disease (EOD), and SEER Summary Stage (SS). It provides a comprehensive system to improve data quality by standardizing rules for timing, clinical and pathologic assessments, and compatibility across all of the systems for all cancer sites. The Collaborative Stage project is sponsored by the American Joint Committee on Cancer (AJCC) in collaboration with several standard-setting organizations, including the SEER Program.
What guideline is appropriate for producing complete, accurate, and timely information?
Discharge of entrusted professional duties & responsibilities
Health Insurance Portability and Accountability Act of 1996 (HIPAA)
Enacted by Congress to simplify and reduce healthcare costs by decreasing administrative costs with standardized health transactions and coding and to promote an effective and efficient use of information technology. The portion of HIPAA entitled "Administrative Simplification" calls for the implementation of common sense privacy and security protection of personal information below are the components of the purpose of the "Administrative Simplification:" 1. Protect and enhance the rights of consumers by providing people access to their health information while controlling inappropriate use of that information 2. Improve quality of healthcare by restoring trust in the healthcare system among: - Consumers - Healthcare professionals - Multitudes of organizations and individuals committed to the delivery of care 3. Improve efficiency and effectiveness of healthcare delivery by creating a national framework for health privacy protection that builds on efforts by: - States - Health systems - Individual organizations, and - Individuals Privacy defines permissible means of access, usage, and disclosure of applicable patient information. Security governs the operational and technical mechanisms necessary to protect patient information. The Security and Electronic Signature Standard (Security) and Privacy of Individually Identifiable Health Information Standard (Privacy) are a team of regulations to protect patient information.
CDC /NPCR
Established by Congress through the Cancer Registries Amendment Act in 1992, and administered by CDC, the National Program of Cancer Registries (NPCR) collects data on cancer occurrence (including the type, extent, and location of the cancer), the type of initial treatment, and outcomes. NPCR, CDC supports central cancer registries in 45 states, the District of Columbia, Puerto Rico, and the U.S. Pacific Island Jurisdictions. These data represent 96% of the U.S. population. Cancer registry data are used to: -monitor cancer trends over time -show cancer patterns in various populations and identify high-risk groups -guide planning and evaluation of cancer control programs -help set priorities for allocating health resources -advance clinical, epidemiologic, and health services research.
ethics
Ethics is a system of moral principles or values. A Code of Ethics governs the conduct of members of the registry profession. The National Cancer Registrars Association (NCRA) published a Guide to Interpretation of the Code of Ethic for cancer registrars that addresses; serving employers honestly, declining favors that might influence behavior, and avoiding commercializing one's position. Consult the textbook, Cancer Registry Management Principles & Practices, page 49, for a comprehensive list of issues addressed in the NCRA Code of Ethics. Pay particular attention to Table 4-1, "Guidelines Addressed in the National Cancer Registrars Association Professional Practice Code of Ethics." Releasing or repeating confidential information obtained from the workplace or privileged information obtained through an appointed or elected association office is a breach of the code of ethics. It is also considered unethical for registrars to: •Provide patients names for marketing •Accept a position or contract for which one is inadequately prepared •Vacate a position without adequate notice •Relate an untruthful accounting of work status •Participate in improper preparation, alteration or suppression of health records •Place material gains ahead of service •Misrepresent professional qualifications or credentials Notice that the above list includes some items that are covered in legal aspects and others reflect honesty, moral principles, and conduct.
Reportable List
Every registry must have a ____ ____ of all cases to be included in the registry.
identifiable health information individually identifiable HIPAA
HIPAA protects individually identifiable health information. All healthcare workers should have a clear understanding of what is considered confidential information. HIPAA considers the following identifiable health information when it refers to the: •Condition of the patient of the patient •Treatment of the patient •Billing More specifically, information is considered individually identifiable if it identifies the patient by: •Name •Identifiers •Address •Social Security number •Phone number •Information that permits reasonable deduction to the patient's identity Additionally, HIPAA protects information that can link the patient's identity with other health information. An example is the linking of a database of patients from a clinic to a database with prescription drug information that could lead to knowledge of the patient's condition such as a diagnosis of a sexually transmitted disease.
Are covered entities required to sign "business associate agreements" with regional or state cancer registries that perform on-site abstracting and cancer data reporting?
HIPAA requires business associate agreements with entities that carry out health care functions on behalf of covered entities, but state and regional registries are acting on behalf of the state when they provide on-site abstracting and reporting services, not the covered entity. Therefore, they are not business associates.
What is the HIPAA Privacy Rule?
In 1996 the U.S. Congress passed a law requiring, among other things, uniform federal privacy protections for individually identifiable health information
Is there specific legal documentation that supports the requirement to release cancer patient information to any agency
Individual state laws and regulations document cancer reporting requirements. Central registries should consult their state laws and regulations regarding release of cancer patient information.
Is it a violation of HIPAA for a covered entity to report information about cases of cancer to the state cancer registry?
No. Reporting information about cases of cancer in accordance with the requirements of state authorizing statutes and regulations is permitted by HIPAA. The Privacy Rule contains a specific provision authorizing covered entities to disclose protected health information as required by law. In fact, penalties for failure to comply with state reporting are specified in state law and often consist of significant fines. 45 CFR 164.512(a)(1)
Does HIPAA apply to the use or disclosure of information about cancer cases after it has been reported to the state cancer registry?
No. The Privacy Rule applies to disclosure of protected health information by covered entities as required by law; state cancer registries are not covered entities. However, state cancer registry authorizing legislation typically includes strict limits on use and disclosure of reported information.
Are covered entities required to determine whether the information about cases of cancer reported to the state cancer registry is the "minimum necessary" information required to be disclosed?
No. The Privacy Rule does include a general requirement that covered entities make reasonable efforts to limit the disclosure of protected health information to the minimum necessary to accomplish the intended purpose of the disclosure. 45 CFR 164.502(b)(1) However, there is a specific exception to this requirement for disclosures that are required by law, such as the reporting of information about cases of cancer to the state cancer registry pursuant to state law and regulations. 45 CFR 164.502(b)(2)(v)
Since HIPAA is federal, will it override the state laws?
No. HIPAA does not obstruct any state law that supports or mandates the reporting of diseases or injury for public health purposes
Does HIPAA require covered entities to obtain written authorization from the individual before reporting protected health information to the state cancer registry?
No. The provision of the Privacy Rule authorizing disclosure of protected health information as required by law is an exception to the requirement for written authorization. (45 CFR 164..512(a)(1) ).
Privacy Security
Privacy and security are a team of protections meant to prevent unintended access, use, and disclosure of confidential information. "Privacy generally refers to the requirements of restricting access, use and disclosure of confidential information to parties with privilege to the information; however, security's operational and technical protections are the tools that ensure implementation and maintenance of these requirements. Security is often the methodology by which privacy or confidentiality is attained." These co-concepts work together to protect confidential information from unintended disclosure and may overlap on occasion, but each has a predominant role. Privacy protections are aimed at meeting confidentiality expectations for data provided or accumulated from health-related information given by a patient for the purpose of diagnosing and treating their health problems. Individuals have the right to deny any and all use of their confidential information; however, this denial would result in no diagnosis or treatment. HIPAA provides consistent requirements that do not allow the disclosure of individually identifiable information so that a patient can expect their confidential information to remain private and used only for their health care. Healthcare providers must have a signed authorization from the patient to permit access to, or disclosure of, any identifiable information for any purpose beyond treatment, payment, and healthcare operations. There are disclosures for which an authorization is not required such as, requirements of law and public health activities. All states have laws that require health care facilities to report cancer to the state cancer registry or department of health, which, in turn, uses the data for public health activities. Patient authorization is not required for the cancer registry to report data to the state central cancer registry. Security encompasses all procedures and actions taken to protect confidential information. An important component of the organization's security management plan is formal operational policies and procedures to provide security instructions to all applicable personnel. A formal process must be established to report, investigate and resolve incidents involved in a breach of confidentiality. Security ranges from delineating who has access to confidential information and the actual physical security of confidential information. Security includes, but is not limited to, a disaster plan,computer passwords, and locks etc. doors and files.
Timeliness of Reporting
SEER - 100% within 20 months of the end of that calendar year NPCR - 90% within 12 months of the close of the diagnosis year and 95% of expected cases within 24 months of the close of the diagnosis year CoC - 6 months from the date of first contact to the time that the data are available for analysis
Legal Aspects
State and national laws, regulations from governmental and non-governmental agencies, and institutional policies all define the legal aspects of cancer registry data. Legal aspects generally relate to the law and the term law encompasses: •Common law or law established by court decisions •Statutory laws is prescribed by legislation •Administrative law formulates rules and regulations necessary to carry out the intent of the law Central or state cancer registries are authorized by statutory law and have administrative rules (or laws) that should clearly delineate the rules and regulations necessary to comply with the reporting law. For instance, the administrative rules will relate who has to report, how the reporting will be accomplished (for example, electronic or paper abstracts), the reporting date or when the data must be reported, what cases to include and exclude, and penalties for not reporting.
Central Cancer Registries and HIPAA
State or regional cancer registries are authorized by state law to collect and receive health information for the purpose of preventing and controlling disease and conducting public health surveillance, investigations, and interventions. State or central registries are operated by a state health department or as a freestanding state-supported agency. Some large states may have designated regional registries that help facilitate complete state reporting. Authorized by state law, state or regional registries are considered public health authorities. HIPAA does not require patient authorization for health care facilities to report cancer information to public health authorities. Patient names and social security number are sent to the central cancer registries. Because the central cancer registry may receive multiple reports from multiple facilities on the same patient, this information is critical to linking these patients and combining the information into one record. State registries conduct audits of health care facilities, both those with and without a cancer registry, to assure completeness and accuracy of cancer reporting. The audits include the review of patient health records for comparing information reported to the central or state registry. State registry employees often collect the data to meet state reporting requirements on behalf of some health care facilities. State cancer registry authorizing legislation includes strict limits on use and disclosure of reported information
State laws NAACCR guidelines and standards IRB
State registries' laws are designed to protect patient information while allowing the data to be used for research and surveillance activities. Some states, like New Jersey, have very specific laws, while others are written in more general language. NAACCR has standards for confidentiality, disclosure of data, and information that legislation and regulations should specify. The NAACCR standards are available to assist any state in establishing or revising cancer reporting legislation. In addition to knowledge of state and federal laws, registry professionals should also be familiar with the institution's rules concerning confidentiality and releasing information. For instance, a hospital's institutional review board (IRB) may require that the patient's physician be notified if the central cancer registry wishes to contact the patient for a special study. This additional rule is actually good practice because many cancer patients may be too ill to participate or even be contacted. The registrar plays a key role in ensuring that everyone involved in the collection, maintenance, and release of cancer data meets all legal and institutional requirements.
What if a patient does not want follow-up information to be collected?
State-mandated cancer reporting typically does not require patient informed consent nor can individuals elect to be removed from reporting. In a state which allows the collection of follow-up cancer data for public health purposes, it can be collected regardless of consent from a patient.
CoC /ACoS
The American College of Surgeons established the Commission on Cancer in 1922 to develop standards for treating cancer
NCI SEER
The Surveillance, Epidemiology, and End Results (SEER) Program of the National Cancer Institute works to provide information on cancer statistics in an effort to reduce the burden of cancer among the U.S. Population. The Surveillance, Epidemiology, and End Results (SEER) Program of the National Cancer Institute (NCI) is an authoritative source of information on cancer incidence and survival in the United States. SEER currently collects and publishes cancer incidence and survival data from population-based cancer registries covering approximately 30 percent1 of the US population. For more information on this, please view the SEER Research Data. SEER coverage includes 26 percent of African Americans, 38 percent of Hispanics, 44 percent of American Indians and Alaska Natives, 50 percent of Asians, and 67 percent of Hawaiian/Pacific Islanders. (Details are provided in the table: Number of Persons by Race and Hispanic Ethnicity for SEER Participants.) The SEER Program registries routinely collect data on patient demographics, primary tumor site, tumor morphology and stage at diagnosis, first course of treatment, and follow-up for vital status. The SEER Program is the only comprehensive source of population-based information in the United States that includes stage of cancer at the time of diagnosis and patient survival data. The mortality data reported by SEER are provided by the National Center for Health Statistics. The population data used in calculating cancer rates is obtained periodically from the Census Bureau. Updated annually and provided as a public service in print and electronic formats, SEER data are used by thousands of researchers, clinicians, public health officials, legislators, policymakers, community groups, and the public. NCI staff work with the North American Association of Central Cancer Registries (NAACCR)External Web Site Policy to guide all state registries to achieve data content and compatibility acceptable for pooling data and improving national estimates. The SEER team is developing computer applications to unify cancer registration systems and to analyze and disseminate population-based data. Use of surveillance data for research is being improved through Web-based access to the data and analytic tools, and linking with other national data sources. For example, a Web-based tool for public health officials and policy makers, State Cancer Profiles, provides a user-friendly interface for finding cancer statistics for specific states and counties. This Web site is a joint project between NCI and CDC and is part of the Cancer Control PLANET Web site which provides links to comprehensive cancer control resources for public health professionals. SEER staff also work with a number of collaborating organizations that are involved in cancer surveillance and related disciplines. The goals of the SEER Program are to: Collect complete and accurate data on all cancers diagnosed among residents of geographic areas covered by SEER cancer registries. Conduct a continual quality control and quality improvement program to ensure the collection of high quality data. Periodically report on the cancer burden as it relates to cancer incidence and mortality, and patient survival overall and in selected segments of the population. Identify unusual changes and differences in the patterns of occurrence of specific forms of cancer in population subgroups defined by geographic, demographic, and social characteristics. Describe temporal changes in cancer incidence, mortality, extent of disease at diagnosis (stage), therapy, and patient survival as they may relate to the impact of cancer prevention and control interventions. Monitor the occurrence of possible iatrogenic cancers, i.e., cancers that are caused by cancer therapy. Collaborate with other organizations on cancer surveillance activities, including the CDC's National Program of Cancer Registries and North American Association of Central Cancer Registries (NAACCR)External Web Site Policy. Serve as a research resource to the National Cancer Institute providing for the conduct of studies that address issues dealing with cancer prevention and control as well as Program and registry operations. Provide research resources to the general research community including a research data file each year, and software to facilitate the analysis of the database. Provide training materials and web-based training resources to the cancer registry community.
The Privacy Rule requires covered entities to provide an accounting of disclosures of protected health information. The accounting must include for each disclosure: (45 CFR 164.528 )
The date of the disclosure · The name of the entity or person who received the protected health information and, if known, the address of such entity or person · A brief description of the protected health information disclosed · A brief statement of the purpose of the disclosure that reasonably informs the individual of the basis for the disclosure or, in lieu of such statement, a copy of a written request for a disclosure under §164.502(a)(2)(ii) or 164.512, if any.
Hospital Registries and HIPAA
The hospital cancer registry is not only a part of the facility's accreditation activities, but when in place, it also reports the facility's data to the state. The cancer registry is not required by state law, it is a requirement for accreditation of the cancer program by the ACoS/CoC. ACoS/CoC-accredited cancer programs must submit their data to the National Cancer Data Base (NCDB),which is maintained and used by the ACoS/CoC for quality test and improvement purposes, including outcomes evaluation. Reporting cancer information to the NCDB is part of the voluntary accreditation requirements. The NCDB receives a limited data set from ACoS/CoC-accredited programs, meaning that only selected data items collected by the cancer registry are actually sent to the NCDB. The HIPAA Privacy Rule allows for the release of a limited data set to the NCDB if certain agreements are in place, including a Business Agreement. Address information is sent, but patient names and social security numbers are not. Instead, a control number made up of several of the abstract's data items (such as the Accession number) is used to identify unique cancer records. Hospital registrars often gather additional patient information outside of the institution so that they can capture the entire first course of treatment and for follow-up information on each patient every year. Cancer patients are discussed on a weekly or monthly basis at the facility's cancer conferences. These conferences provide a multidisciplinary forum that aids in arriving at the very best treatment plan possible for the patients under discussion.
Are covered entities required to provide individuals upon request with an accounting of any protected health information that the entity has disclosed about them to the state cancer registry?
Yes
If the government-authorized public health entity is not located in the same state as the covered entity, is it still ok under HIPAA to provide the data?
Yes, it is not prohibited. In fact, the definition of a 'public health entity' was broadened in the section "Uses and Disclosures for Public Health Activities", which states specifically "...We broaden the scope of allowable disclosures ...by allowing covered entities to disclose protected health information not only to U.S. public health authorities but also, at the direction of a public health authority, to an official of a foreign government agency that is acting in collaboration with a public health authority." FR p. 82525 2 45 CFR 164.512
Are private practice physicians still required to report new cancer cases?
Yes, in compliance with state reporting regulations. The central cancer registry has a reportable list that identifies which cancers are reportable, and all reportable cancers should be reported, as required by state law.
Once HIPAA is in place, will pathology labs be able to continue to send new cancer case information to the state cancer registry?
Yes. Public health reporting under the authority of state law is specifically exempted from HIPAA rules
What is a 'Covered Entity' under HIPAA? 45 CFR 160.103
a health care plan, a healthcare clearinghouse, or a health care provider who transmits any health information in electronic form for financial and administrative transactions. A 'health care provider' is "a provider of medical or health services, and any other person who furnishes, bills or is paid for health care in the normal course of business.
What is a court order to provide certain documents, such as medical records?
a subpoena
circuit rider
abstractors who are employed by the central registry to visit reporting facilities and perform casefinding and abstracting of data in the field
What is a 'Public Health Authority' under HIPAA? 45 CFR 164.501 and 45 CFR 164.512
an agency or authority of the United States, a State or territory, a political subdivision of a State or territory, or an Indian tribe, or a person or entity acting under a grant of authority from or contract with such public agency, including the employees or agents of such public agency or its contractors or persons or entities to whom it has granted authority, that is responsible for public health matters as part of its official mandate."
Provide a solution for computer failure.
automatic back up system
Death Certificate Only
cancer death that did not occur in a reporting hospital and after follow-back no other information was found.
Death Clearance
completed by population-based registries at least annually 1. Links all death records from the states vital statistics office to registry records to identify patients that have died. Indicates positive, possible and nonmatches. 2. Identifies death records that mention cancer as one of the causes of death but does not link with previously registered cases
What are guidelines addressed in the NCRA Professional Practice Code of Ethics?
cooperation w/other professions and organizations
Provide a solution for transmission of confidential data.
data encryption
National Data Exchange Agreement
developed by NAACCR allows states to exchange data with all cosigners of the agreement
incidence-only registries
does not collect treatment or outcome data determines cancer incidence rates in different groups may also collect data on healthcare providers may support cancer research may also predict cancer caseload
E-path Reporting
entire pathology report is scanned for reportable terms that are indicative of cancer and qualifies the report as "potentially reportable" automated, complete and rapid casefinding, transmission and central registry storage requiring little human visual review
Uniform Data Standards Committee (UDS)
established by NAACCR responsible for data set standardization of CCRs provides formal means for additions and changes standardized data set is found in NAACCR Standards for Cancer Registries, Vol. II: Data Standards and Data Dictionary
NCCCS
formed in 1993 provides oversight of issues in cancer surveillance
Central Registries' Goals and Objectives
incidence surveillance survival surveillance analytic research clinical research patient care surveillance professional education enumeration of caseload statistics for planning community and state outreach and public policy evaluation of cancer control initiatives
Budget
influenced by the annual caseload, amount and type of data, number of source reports collected per case, and data collection methods should be developed for a 3 - 5 year period major categories are personnel, travel and IT costs
IRB
institutional review board
What unethical practice occurs when a cancer registry professional places this ahead of service?
material gain
aggregate date
medical information combined without patient identifiers
AJCC
most comprehensive anatomic staging data available Cancer Staging Manual and Cancer Staging Atlas.
non-population based central registries
multihospital military registry NCDB DoD - AC-TUR
What are some examples of possible duality of interest?
outside consultation services; committee appointments; business enterprises interests
Provide a solution for keeping data secure.
passwords, audit control
In regards to confidentiality, what do cancer registrars need to be concerned with?
patient information; identity of health care professional; identification of institution
What guideline is appropriate for truthfully and accurately representing credentials, education, and experience?
professionalism
population-based central registries
regional, multistate, provincial or national includes all cancer cases in a defined geographic area calculates incidence and mortality rates population is determined by census or related data
catchment area
the geographic area from which the population source of the central registry is drawn.
Cancer registry professionals working from a remote or home office must follow the same confidentiality & privacy guidelines as when working in an employer's office?
true
Honorable discharge of the Association's responsibilities is one of the guidelines addressed in the NCRA Professional Practice Code of Ethics?
true