https://www.nih.gov/health-information/nih-clinical-research-trials-you/list-registries
Purpose: Select and research a healthcare registry that interests you. Summarize for your classmates its purpose, composition and desired outcomes. Identify areas where HIM can play an important role in the management of healthcare data.
Choose any registry that you are interested in (there are 100s).
Click here to go to a resource if you are stuck and need an idea.
Start your research by reading 3-4 journal articles on your chosen registry or articles about challenges on maintaining a registry (data integrity, privacy and security, etc)
Search for your registry on YouTube and watch a video, if applicable.
Search for your registry on TedTalks and watch the presentation, if applicable.
Submit a 2-3 page paper (double spaced) for this assignment and then also go to the DB area and follow the instructions there as well.
In your paper let me know things like:
the basics of the registry
why it is being used
who uses it
when was it created
what examples can you think of where HIM can be effective in these areas
success story and/or interesting facts
please include all citations/resources used
Expert Solution Preview
Introduction:
Healthcare registries are an important tool used to collect and maintain health-related data for various purposes. They enable healthcare practitioners and researchers to evaluate the safety and effectiveness of healthcare interventions, identify healthcare patterns and trends, and generate new hypotheses. This paper discusses the National Cancer Institute’s Surveillance, Epidemiology, and End Results (SEER) program registry, its purpose, composition, and desired outcomes. The paper highlights the roles of health information management (HIM) professionals in the management of healthcare data and the importance of maintaining data integrity, privacy, and security.
Registry Overview:
The SEER program registry is a US-based resource that collects and manages information on cancer incidence and survival rates. It was established in 1973 as a project of the National Cancer Institute and currently covers approximately 35% of the US population. The registry collects data from sources such as hospitals, pathology laboratories, radiation treatment centers, and outpatient facilities. The SEER program collects data on various types of cancer, including breast, colorectal, lung, ovarian, and prostate cancer.
Purpose of the Registry:
The SEER registry aims to gather and analyze cancer data to help determine trends, patterns, and risk factors associated with cancer. The program aims to provide accurate and timely information to aid clinical and public health decision-making. The data captured in the SEER registry is utilized to track changes in the incidence, mortality, and survival rates for different types of cancer.
Composition of the Registry:
The SEER program registry collects information from various sources, such as pathology reports, radiographs, clinical examination records, and death certificates. The registry maintains data on patient demographics, tumor characteristics, diagnostic procedures, and treatment modalities. The system stores more than 17 million records, with approximately 600,000 new cases of cancer being added each year.
Desired Outcomes:
The primary goal of the SEER program registry is to provide accurate and accessible information to healthcare professionals and the public to improve cancer prevention and control strategies. The registry’s data is used to inform research, policy, and patient care decisions. For instance, clinicians use data from the SEER program registry to determine cancer treatment regimens, measure treatment effectiveness, and evaluate cancer survival rates.
HIM’s Role in Managing Healthcare Data:
HIM professionals play an essential role in the management of health-care data in the SEER registry. They are responsible for ensuring data accuracy, completeness, and security. HIM professionals ensure that data are collected, processed, and disseminated according to legal and ethical standards. HIM professionals also ensure that registry data are of high-quality and readily accessible to clinicians, researchers, and policymakers.
Success Story:
The SEER program registry has contributed to significant advancements in cancer research, diagnosis, and treatment. For example, data from the registry showed that papillary thyroid cancer incidence rates rose approximately 8% annually from 1992 to 2012. This data led to more investigations and analysis, ultimately determining that the increase was partly due to over-diagnosis, and improved guidelines for diagnosing and treating papillary thyroid cancer followed. The SEER program registry’s data have been used in more than 8,000 research publications, advancing knowledge of many aspects of cancer prevention and treatment.
Conclusion:
The SEER program registry is an essential tool for collecting and analyzing cancer data that assist in developing effective cancer prevention and treatment strategies. HIM professionals play a crucial role in managing the registry’s data to ensure accuracy, completeness, and security. The SEER program registry is contributing to significant advancements in cancer research, prevention, and treatment that will continue to benefit patients and the healthcare industry.
References:
https://seer.cancer.gov/about/
https://www.cancer.gov/about-nci/organization/ccg/research/structural-genomics/tombstone-immortalization
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4973210/
