Running head: Abstracting requirements for health care registries

Abstracting requirements for health care registries Ashley Crea Boise State University

Abstracting requirements for health care registries

Health care facilities are required to track information on all patients that are treated. Data that is gathered on an individual patient serves many purposes from submissions for reimbursement, to tracking procedures, medications, and outcomes. After collection, selective data is then sent to numerous registries for further use and research. The abstracting requirements for health care registries do not collect a sufficient amount of viable information. The lack of information that is collected from the abstracting requirements of health care registries generates an absence of crucial data elements for registries, overall incomplete and incorrect data, and creates omitted risks by suppressing information that is distributed for further research. Healthcare data is represented through ...basic facts and observations about patients progress, measurements and conditions (LaTour, Maki & Oachs, p.194). Data is then formed into sets which contain the required data elements with uniform definitions (LaTour, Maki, Oachs, p. 195). For registries, abstracting requirements are determined by the goal of a registry and then a domain of exact data elements is defined to abstract appropriate information to meet the purpose and interest of the registry (Gliklich, Dreyer, 2010). Case findings are used to identify patients that have been seen in a healthcare facility for a specific condition, disease, or treatment that is of interest to a registry (LaTour, Maki & Oachs, p.195). After cases have been identified, extensive information is abstracted from the paper-based patient record into the registry database or fed from other databases and entered into the registry database (LaTour, Maki & Oachs, p. 370). With registries collecting only patient information based on the abstracting requirements mandated per that registry, there is an absence of important information that is reported to both state and national registries. There are several registries including certain trauma, cardiac, and

Abstracting requirements for health care registries

immunization registries, which only submit data on patients during the time when they are seen or treated (Immunization registry regulations, 2013; Hansen, 2013; Beltz, 2013). Once a patient has left a facility after being treated for immunizations, a cardiac, or trauma issue, the gathering of vital patient information for these registries ceases (Immunization registry regulations, 2013; Hansen, 2013; Beltz, 2013). Any information that could impact registry data elements is no longer gathered. For immunization registries in the State of New York, information on vaccinations required to be gathered on all individuals age eighteen and under. For individuals that are the age of nineteen or above a written consent in some states is needed in order for their information to be entered into the registry (Immunization registry regulations, 2013). By not gathering immunization information on all individuals, including adults, it is very difficult to track evolving medical issues such as diseases and viruses that can become epidemics. For cardiac registries in the State of Idaho, once a patient has been treated for a cardiac issue and leaves the facility the patients information on the incident is no longer gathered (Beltz, 2013).By not having a continuing update on patient progress after a cardiac procedure treatment methods cannot be evaluated to enhance the outcomes of patients (Beltz, 2013). If patients are not receiving beneficial treatment from commonly used cardiac procedures physicians could potentially be causing more harm, but this may be overlooked for a longer periods of time due to the of the lack of documentation after a patient is released (Beltz, 2013). For example, if multiple patients underwent a coronary artery bypass grafting (CABG) and there were consistent complications with numerous patients thirty days after each a patient when home, the incidence and quality of life from this complication would not be documented in the cardiac registry (Beltz, 2013). Important elements from cardiac registries are absent by not abstracting incidence of cardiac procedure and treatment complications. Another registry that does not require that

Abstracting requirements for health care registries

abstraction and collection of information on patients quality of life after treatment is the trauma registry for the State of Idaho (Hansen, 2013). Traumatic accidents can results in extended recovery period that including therapy, rehabilitation, and in severe cases permanent physical and mental damage. Once a patient is released from a medical facility and the recovery process continues at home, then the outcomes of the accident and quality of life are not tracked by the trauma registry of this particular state (Hansen, 2013). When important elements concerning a patients quality of life are not being abstracted by a registry then complete information that could help in providing better medical care in the future for patients will never be obtained. One registry that is required to maintain a lifelong record and documentation on patients diagnosis, treatment, and outcome, is the cancer registry (Mermerian, 2013). This standard is legally mandated at both a state and a national level, and keeps a record on patients from the first cancer diagnosis until death, even if the death is unrelated to the cancer itself (Mermerian, 2013). If all abstracting requirements for registries mandated elements such as as the quality of life after treatment, information detailing follow up of procedures, and longitudinal records, there would be more comprehensive information within a registry. Data can be identified as high-quality only when they conform to a recognized standard (LaTour, Maki, Oachs, 2013). Due to the different recognized standards among registries, high quality is lacking thus creating incomplete and incorrect data is expected with the current abstracting requirements for health care registries. According to Gliklich and Dreyer (2010),

In cases where clinical data standards for the disease area do not exist, established datasets may be widely used in the field. For example, United Network of Organ Sharing (UNOS) collects a large amount of data on organ transplant patients. Creators of a registry in the transplant field should consider aligning their data definitions and data

Abstracting requirements for health care registries

element formats with those of UNOS to simplify the training and data abstraction process for sites.

Registries can abstract their needed data elements from other registries. When this is done a registry may need to alter their standard definition of individual data elements to use the information that they have been provided by another registry. By altering the recognized standards of specific data elements, the data elements abstracted on patients could be misrepresented and imperative information may be incomplete. The definition of the element that is required for the abstraction may also be tailored so dramatically that it leads to an incorrect representation of what the data elements true meaning really is. Therefore, the abstraction requirements for a registry may not attain the correct information that they are looking for in order to fulfill the purpose of a specific registry. Incomplete data can also be found within the variations of data elements collected for each cancer database. The Cancer Data Registry of Idaho (CDRI) is a good example of a registry that collects different data elements than other state and national registries. They do this by deviating from the recognized data standard and collecting information on squamous cell carcinoma of the skin and its formation (Mermerian, 2013). According to the California Department of Public Health (2013), they do not collect any information on squamous cell carcinoma of the skin for their state registry. Other states including, West Virginia and Washington, also report that squamous cell carcinoma of the skin is not required to be reported to their registry (About the west virginia cancer registry, 2013; Washington state cancer registry, 2013). According to the North American Association of Central Cancer Registries, the Guidelines for ICD-O-3 Implementation shows that the comparison of cancer reportability is also different at national level databases (2010).

Abstracting requirements for health care registries

Table 1 below from the Guidelines for ICD-O-3 Implementation shows these comparisons.

Note: This data on cancer registry abstracting are adapted from the Guidelines for ICDO-3 implementation prepared by the NAACCR ICD-O-3 Implementation Work Group, 2000, p. 17. Retrieved December 3, 2013, from North American Association of Central Cancer Registries website: http://www.facs.org/cancer/coc/naaccr.pdf

The table from the Guidelines for ICD-O-3 Implementation (2000) shows that The Commission on Cancer (COC), Surveillance Epidemiology, and End results program (SEER), the National Program of Cancer Registries (NPCR), and Central Cancer Registry (CCR), do not consider skin cancer with morphology, including basal and squamous cell skin cancers, to be reportable at a national level and do not gather any information on these cancers from state cancer registries. Specific squamous cell information that is gathered by the CDRI is not comparable to several of the state registries as well as the national databases because it is considered not reportable (Mermerian, 2013). The specific patient information on squamous cells would be useful for all facilities to collect data on for further research, but because minimum data sets do not collect these data elements the State of Idaho can only compare diagnoses, treatments, and results with their internal findings (Mermerian, 2013). If this issue was tracked nationwide through both state

Abstracting requirements for health care registries

and national registries there would be more complete data and many benefits for patients with an increased probability of a better outcome from cancer treatments. The main goal of registries is not only to gather and analyze health data, but also to establish better treatment methods and prevention of illnesses and injuries among people. This goal is very difficult for registries to achieve because omitted risks are not attained through the current abstracting requirements for health care registries. When a patient is seen for an illness or injury an external cause or activity codes are gathered by healthcare facilities and placed in the patients record. The purpose of an activity or external cause code is To provide data for injury research and evaluation of injury prevention strategies. These codes capture how the injury or health condition happened (the cause), the intent (unintentional or accidental, or intentional, such as suicide or assault), the place (where the event occurred), and the activity of the patient at the time of the event (Buckholtz, 2012). According to Cheryl Hansen (2013), a certified trauma registrar, indicates that the Idaho Trauma Registry (ITR) omits external cause codes from its abstracting requirements. A patient that is seen at a trauma level facility in the state of Idaho will be admitted to the hospital and all information on how the trauma occurred will be documented through the ICD-10-CM activity codes or external cause codes and placed into the health record, including activity descriptions of a trauma; but upon abstraction for the trauma registry external cause codes, indicating how the traumatic accident occurred will be disregarded and not submitted (Hansen, 2013). These vital pieces of activity information could be extremely useful for others who use trauma registry information as a preventative tool. Trauma registry information can be used for educational purposes to prevent more injuries. Educational uses can include printed material such as posters,

Abstracting requirements for health care registries

brochures, and flyers, and media content such as commercials, and personal interactions in schools, seminars, or meetings (A community guide to injury prevention, 2013). The ITR also omits data on patients that are deceased before they are admitted or treated in a facility from a traumatic accident (Hansen, 2013). Legislators could benefit if trauma registries provided external cause codes on deadly accidents so they can use the information to increase public safety. In order to increase public safety convincing data is needed from the external cause codes of the traumatic deadly accidents in order for legislators to pass bills and regulations to prevent harm to more individuals (A community guide to injury prevention, 2013). By not including this and other elements, the information that the registry is providing lacks information which could be used to better improve the safety of others and prevent traumatic accidents. Educational companies, legislators, and medical facilities that use the registry for qualitative information will not gain the knowledge in which they are seeking when crucial data is omitted from registries. In 2004, President George W. Bush created law that would be implemented in 2014, that required all medical records and their information to convert over to electronic records. The main goals of this transition was to accelerate the adoption of electronic health records, construct an interoperable health information exchange infrastructure, provide choices to the patient and promote the building of a personal health record, and improve the surveillance of public health (Petigara, Tanaz & Anderson, 2007). With this implementation requirement coming in 2014, abstracting requirements can be easily expanded for all registries. Medical professionals will be held accountable for inputting more patient information into the newly expanded electronic records. The electronic records will create more efficiency for physicians and medical staff who will be gathering these extra data elements because of their concise development created by software (Rothman, Leonard, & Vigoda, 2012). After facility implementation, registries can then

Abstracting requirements for health care registries

update their abstracting requirements to gather additional information to better support goals, research, and eliminating the lack of important data elements. All information that is gathered on the electronic records will also be interoperable and can be easily transferred between facilities and registries nationwide, and help to build complete data on patients and treatment. Performance management can also be evaluated with electronic records, and this would provide useful data and information to use in order to fill the gaps in registry data sets (Thompson, Velasco, Classen, & Raddemann, 2010). Registries for facility and national use all have a common goal: to enhance research and better the outcomes for all patients receiving medical treatment. In order to eliminate the lack of information within these registries and replace omitted data with useful information, electronic records will need to fully be in place and used in all facilities. An abundant amount of information is gathered on patients when they are medically treated. It is imperative to gather only information that is needed to benefit patients, but current abstracting requirements are not sufficient. The gaps that are seen because of the abstracting requirements for registries are not from gathering too much information, but from not gathering enough individual important facts that could be used for better treatment and prevention. By implementing electronic records facilities and registrars can alter abstracting requirements and maintain to provide convincing data in order to better benefit patients and meet goals and intentions of registries.

Abstracting requirements for health care registries

10

References About the west virginia cancer registry. (2013). Retrieved December 2, 2013, from Department of Health and Human Resources: Office of Epidemiology & Prevention Services website: http://www.dhhr.wv.gov/oeps/cancer/Pages/AboutWVCR.aspx A community guide to injury prevention. (2013). Retrieved December 3, 2013, from The American Association for the Surgery of Trauma website: http://www.aast.org/library/traumaprevention/injurypreventionguide.aspx Beltz, K. (Presenter). (2013, October 23). Cardiac registries. Lecture presented at Health Information Management Class, Boise State University, ID. Buckholtz, R. (2012, November 27). Complete the patient's story with ICD-10-CM cause codes. Retrieved December 3, 2013, from Justcoding.com website: http://justcoding.com/286867/complete-the-patients-story-with-icd10cm-externalcause-codes California cancer registry. (2013). Retrieved December 2, 2013, from California Department of Public Health website: http://www.cdph.ca.gov/programs/ccr/Pages/default.aspx Gliklich RE, Dreyer NA, editors. Registries for Evaluating Patient Outcomes: A User's Guide. 2nd edition. Rockville (MD): Agency for Healthcare Research and Quality (US); 2010 Sep. Chapter 5, Data Elements for Registries.Available from: http://www.ncbi.nlm.nih.gov/books/NBK49432/doi:10.1002/msj.21351 Hansen, C. (Presenter). (2013, October 18). Idaho trauma registry. Lecture presented at Health Information Management Class, in Boise State University, ID. external

Abstracting requirements for health care registries

11

Immunization registry regulations. (2013). Retrieved December 4, 2013, from New York State Department of Health website: http://www.health.ny.gov/prevention/immunization/ information_system/laws_and_regulations/immunization_registry_regulations.htm LaTour, K. M., Maki, S. E., & Oachs, P. K. (Eds.). (2013). Health information management concepts, principals, and practice (Fourth ed.). Chicago, IL: American Health Information Management Association. Mermerian, A. (Presenter). (2013, October 25). An introduction to the cancer registry. Lecture presented at Health Information Management Class, Boise State University, ID. NAACCR ICD-O-3 Implementation Work Group. (2000, November 27). Guidelines for ICD-O3 implementation. Retrieved December 3, 2013, from North American Association of Central Cancer Registries website: http://www.facs.org/cancer/coc/naaccr.pdf Petigara, Tanaz and Gerard Anderson. Implementing Electronic Health Records: An Update. Health Policy Monitor, October 2007. http://www.hpm.org/survey/us/b10/3 Rothman, B., Leonard, J. C., & Vigoda, M. M. (2012). Future of Electronic Health Records: Implications for Decision Support. Mount Sinai Journal Of Medicine, 79(6), 757-768. Thompson, D., Velasco, F., Classen, D., & Raddemann, R. J. (January 01, 2010). Reducing clinical costs with an EHR. Healthcare Financial Management : Journal of the Healthcare Financial Management Association, 64, 10, 106-8. Washington state cancer registry. (2013). Retrieved December 2, 2013, from Washington State Department of Health website: https://fortress.wa.gov/doh/wscr/WSCR/StaticPage.mvc/AboutWSCR