Download How are MCR cancer data used? - CM

Dale LeBlanc
Carol Zack
Health Information Technology
3 December 2016
How Statics are Collected and Used by Hospitals
The first Cancer registry was founded in 1926 at the Yale-New Haven Hospital (NCRA
201a). It long has been long been recognized that data and information is needed to understand
diagnosis and help treat all cancers. By using the Cancer registry health official’s, policy makers,
doctors and researchers can spot trends and areas of high incidents or reoccurrence and use these
facts to help treat and prevent the disease.
All hospital or treatment centers gather information from the cancer patients they are
treating. The information is taken from the patients’ health record. This becomes a secondary
data source. The needed information consists of data such as age, race, gender, where the patient
lives and marital status. The type of cancer is also reported including how long the patient
survives or if they succumb to the disease or are listed as cancer free. The information is coded
in a way to make identify the person impossible. All information is then coded and put into the
Cancer registry for use in the general treatment and prevention of the disease. One of the clearest
reasons for the Cancer Registry is found on their web site.
Central Maine Comprehensive Cancer Center assists the field of cancer research by
recording and reporting cancer statistics. Our Cancer Registry includes a data system that
collects, manages, and analyzes cancer patient data. Our data is available to all cancer
researchers nationwide and internationally.
The data is also used at CMMC to educate medical staff, analyze treatment results, and evaluate
the quality of care. The data system is managed by a Certified Tumor Registrar (CTR).
The Registry obtains continually updated information through hospital, physician, and patient
contact. We ask for our patients' help in keeping information current. All cancer patient
information is treated with confidentiality; cancer data is used without personal identifiers. The
Cancer Registry helps contribute to improved outcomes for patients with cancer.
The reporting to the Cancer registry is required by the state of Maine follows standards
By the American College of Surgeons, a Cancer Registry is one of the requirements for the
approval process for a cancer program. The North American Association of Central Cancer
Registries has a certification program for state population-based registries. Certification is based
on the quality of data collected and reported. The Center for Disease Control and Prevention
also has national standards for the completeness, timeliness, and quality of data collected from
state registries. (HIFT page177).
The MCR spends a lot of time making sure that the information is complete and accurate.
For example, because more than one source often reports the same case, MCR staff must make
sure that each case is in the database only once. MCR staff are specifically trained to do this
quality assurance work and keep these skills up to date with continuous education.
What kind of information is reported?

About the person: age, sex, race, residence, occupation

About the cancer: which body part (site), how far it has spread (stage), when it was
diagnosed

Treatment: surgery, radiation, chemotherapy
How is the information kept confidential?
The MCR follows strict requirements of federal and state law to keep all personal information
confidential. This means that any information that could identify a person is kept in locked files
or secure computer accounts. Strict policies are in place regarding the release of data.
How are MCR cancer data used?
MCR data are currently used in several forms, including:

the annual report, which is often used to answer general questions by the public;

special reports which are generated in response to requests for aggregated data;

identifiable data sets for researchers in the field of cancer;

investigating local concerns about cancer rates; and

data submissions for larger collaborative efforts.
Data Uses & Data Users
Data Use
Types of Users
Public Health Organizations (private/public), Other State Agencies,
Annual Report
Legislators, Hospitals, Universities, Health Insurance Companies, Private
Citizens
Summary data
Comprehensive Cancer Planning Initiatives, Hospitals, Universities,
reports
Students, State Agencies
Identifiable data
Researchers & Planners
for research
Local concerns
State Agencies, Towns, Industries
about rates
North American Association of Central Cancer Registries, National
Data submissions
Program of Cancer Registries, Central Brain Tumor Registry of the United
States
Why is Collecting Data Important?
Cancer has recently become the leading cause of death
among Maine citizens. Each year over 8,000 Maine residents are diagnosed with cancer and over
3,100 die of this disease. Many of these deaths could be prevented through early detection or
behavioral changes. The data from the MCR can be used to learn:

More about the causes of cancer and how to prevent it.

How to detect cancer earlier so there is a better chance of cure.

Whether concerns about local rates of cancer, which may be too high, need further
investigation.
The Maine Cancer Registry seeks to reduce the incidence and mortality due to cancer by
providing data for research and intervention programs.
Cancer case reporting to the state and CDC is required by law for all providers and health
care facilities. It is necessary and needed for the treatment and prevention of the disease. The
data is coded and is considered secondary data. The main source of the information in taken from
the patient’s health record. The is used to try and find patterns or areas and reasons for higher
rate of incidents and to hopefully provide aide in the treatment and prevention of the disease.
References
Central Maine Medical Center (2016) Cancer Care, -cancerregistry/RK=0/RS=jyxpZ15SlFnznfwJPcJFEIraUv8-ancer Registries
Maine.Gov .org (2016) Division of Public Health Maine Cancer Registries
Gordon L Leslie, Sayles B. Nannette 2016 fifth edition Health Information Management
Technology, Gordon L. L. Sayles N. B. ed. Chicago, Illinois American Health Information
Management Association