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1 Hospice Care Centers’ Cancer Reporting United States Virgin Islands Central Cancer Registry REPORTING CANCER CASES TO THE UNITED STATES VIRGIN ISLANDS CENTRAL CANCER REGISTRY A Central Cancer Registry is a reliable and updated source of information for research on cancer and its causes. A cancer registry is an epidemiologic surveillance system designed to collect information regarding incidence, distribution, risk factors and mortality of the disease. This information is essential to public health professionals, researchers, the medical community, and policy makers to understand and address the cancer burden. This information is acquired through active reporting of data for cancer cases and central nervous system neoplasms in places where these patients are diagnosed or treated. The United States Virgin Islands Central Cancer Registry (USVI-CCR) is part of the Department of Health (DOH) - Chronic Disease Prevention Program (CDPP). Beginning on January 1st, 2016, the USVI-CCR will start the collection of cancer cases. Reportable cancer cases diagnosed and/or first course of treatment done at your facility on and after this date must be submitted to the Central Cancer Registry. The collaboration of each healthcare provider in the USVI is of vital importance to achieving a successful Central Cancer Registry implementation that will result in great benefit to our community. What is a Central Cancer Registry? 2 T he reporting of cancer cases by health care professionals is required by law since 1999. Act No. 6286 establishes that: “each health care facility diagnosing or providing treatment to cancer patients shall report each case of cancer to the Commissioner in a format prescribed by the Commissioner…”. Even though there has been a law requiring cancer reporting, there has been no law enforcement since the enactment of the law. The goal for the DOH is to have a fully functional Central Cancer Registry with a reference date of January 1st, 2016. The DOH will endeavor to inform healthcare providers and answer any questions they may have regarding data collection. It is the main goal of the USVI DOH to have a Central Cancer Registry with accurate and updated data. It is also expected to have data that can be used for research, and data that can be published nationally. To achieve all these goals, information to be collected must comply with the standards, guidelines and data requirements established by the Centers for Disease Control (CDC) - National Program for Cancer Registries (NPCR). Act No. 6286 from 1999: To establish a Cancer Registry for the Territory of the Virgin Islands Why Hospice Care Centers offices must report cancer cases? Patients with terminal disease may receive hospice care at home or in a specialty hospital unit, nursing facility, or designated hospice facility. The central cancer registry access to this information is important for case ascertainment on patients who have died with a cancer diagnosis identified only through death certification information. 1 1. “Central Cancer Registry Data Sources”. Centers for Disease Control and Prevention. Centers for Disease Control and Prevention. <http://www.cdc.gov/cancer/npcr/informatics/aerro2/ccr/c_sources.htm.> 3  Invasive and in situ malignancies and VIN III, VAIN III and AIN III.  Borderline and benign primary intracranial and CNS tumors  Lymphoma, leukemia, and other malignant blood disorders (chronic myeloproliferative diseases, and myelodisplastic syndromes) The following malignancies are NOT REPORTABLE:  Basal Cell and Squamous Cell Carcinoma of the skin (unless it is occurring in the genitalia and vermillion of lips)  Carcinoma in situ or intraepithelial neoplasia grade III of the cervix CIN III) and prostate (PIN III). ***If you have any question about determining reportability, call the USVI-CCR for assistance.*** Reportable Diagnoses 4 HIPAA & Cancer Registry T he Health Insurance Portability and Accountability Act (HIPAA) allows the divulgation, without individual authorization, to the public health authorities allowed by law to collect and receive this information with the purpose of disease control and prevention. HIPAA is not an obstacle for any local act that mandates the disease reporting for public health purposes. For more information regarding this theme please visit: http://www.cdc.gov/mmwr/preview/mmwrhtml/m2e411a1.htm . Report your cases in 3 easy steps... 1. Identify the patient with a definitive diagnosis of any of the reportable diseases listed in the Reportable Diseases List. 2. Complete the Physicians Reporting Form - the form can be completed by either printing and filling out the form (information must be legible) or using the PDF fillable format available under the Forms & Applications Section on the DOH webpage www.healthvi.gov (preferred method). 3. Send it to the USVI-CCR - completed forms may be sent over fax to 718.9505 or via encrypted email (described later in this document) to viccr@doh.vi.gov (preferred method). Form 002: Hospice’s Reporting Form Created: 2015.03.25 Edited: 2016.06.28 Virgin Islands Central Cancer Registry – Hospice Cancer Report Form* Charles Harwood Complex, 3500 Estate Richmond Christiansted, VI 00820-4370 Tel. (340) 718-1311 x 3774, 3793, 3700 / Fax (340) 718-9505 / Email: viccr@doh.vi.gov Diagnostic Work Up at Diagnosis Physical examination X-Ray / Scans / Scopes *This form is intended for hospice care setting ONLY. Not for physicians, hospitals or healthcare clinics. **Please, send the completed form to the VICCR via e-mail to: viccr@doh.vi.gov To protect our patient’s privacy and to comply with HIPAA regulations the attached forms must be encrypted and password protected using an encryption software. Microsoft encryption is not recommended. Hospice Care Facility Information Facility Name Referred to: Physician Name Patient’s Information Full Name (First, Middle and Last) Social Security Sex: ☐ Male ☐ Female ☐ Other: __________________ Physical Address (please include Estate, City, State, Zip) Phone Number Medical Record # Date and Place of Birth Marital Status Health Insurance Race: ☐ Caucasian / White ☐ Black ☐ Asian ☐ Native American ☐ Other ☐ Unknown ***For Hispanic patients, please select a race. Hispanic: ☐ Yes ☐ No ☐ Other Cancer Information Date of Diagnosis Primary Site (e.g.: colon, breast, prostate, etc.) Histology (adenocarcinoma, squamous carcinoma, lymphoma) Place of diagnosis Treatment Information Type / Description Date Where performed Surgery Radiation Chemotherapy Hormone BRM Other (includes alternative medicine) Additional Comments Follow Up / Patient Status Completed by Date of last contact: Vital Status: □ Alive □ Dead Cancer Status: □ evidence of CA □ no evidence of CA If expired; please provide date and place of death: Name: Date: Form 002: Hospice’s Reporting Form Created: 2015.03.25 Edited: 2016.06.28 HOSPICE’S CANCER REPORT FORM INSTRUCTIONS Facility Information Reporting Facility Section Record the complete name, address, and telephone number of your facility or physician's office. Patient Information Name Record the patient’s full name. Social Security Number Record the patient's social security number. Do not record a spouse's number. Sex Check off the patient’s sex/gender. Physical Address Record patient’s permanent home address at time of diagnosis, not a temporary relocation for treatment. Street address takes priority over post office box number. Phone Number Record the patient’s phone number Medical Record Number Record the patient’s medical record number Date and Place of Birth Record patient’s birth date in MM/DD/YYYY format. Also record the place of birth. Marital status Specify patient’s marital status at time of diagnosis Health Insurance Record the patient’s health insurance Race Check off the patient’s race. Hispanic Origin Check off whether the patient considers himself or herself to be of Hispanic origin. Cancer Information Date of Diagnosis Record the date the patient was first diagnosed with cancer by a recognized medical practitioner. Record in MM/DD/YYYY format. If unknown, record "unknown" Primary Site Record the site of origin of the tumor. Record the subsite if known (i.e., UOQ breast, LL lung). If unknown, record "unknown". It is important to identify the primary site and not a metastatic site. Histology Record the histologic cell type of the tumor (ie. mucinous adenocarcinoma; infiltrating ductal CA Place of Diagnosis If the patient was diagnosed elsewhere, record the facility name and location. If unknown, record "unknown" Treatment Information Treatment Record all first-course treatment that the patient received. Do not record second-course treatment. First-course treatment includes all cancer-directed treatment modalities given by clinicians at the time of diagnosis. When recording treatment, write the type of treatment, the date the treatment was received or began and where performed. Follow Up / Patient Status Date Last Seen Record the date the patient was last seen or date of death in MM/DD/YYYY format. Vital Status Check the vital status of the patient as of the date last seen. Cancer Status Check the patient's cancer status as of the date the patient was last known to be alive or dead.. If Expired, Place of Death If patient expired, record the place of death. If unknown, record "unk". Cause of Death If patient expired, record the cause of death. If unknown, record "unk". Completed by Form Completed By Record the full name of the person completing the form. Date Completed Record the date completed. 7 Saving PDF Fillable Format Forms 1. Once a cancer case has been identified, please complete the Physicians’ Reporting Form. The form that is attached to this email is in a PDF fillable format which simplifies the process by typing the information directly into the form. If you have any question filling the form, please call 718.1311 ext.: 3198 / 3037 / 3100. Note: If you are completing multiple forms, you must Save As every form to avoid losing information. (Click File > Save As > Assign a name to the file > Click Save) After saving the form, you will be able to start a new one. Be careful not to save the form with already existing file names, otherwise you will be overwriting an existing document and losing information. 2. A copy of the pathology report must be submitted along with the form. 3. The forms can be submitted either by: a. Encrypted e-mail. For instructions on encrypting files please, read the “Encrypting Files before Sending Data to the CCR” section. b. Fax: send the completed form and pathology report to 340.718.9505 8 Data encryption is the process of converting data from a plain-text, or readable, form into a form that can be understood by the sender and the intended recipient, and no one else. Encrypted data usually looks like a long sequence of random letters and numbers. The intended recipient of the data has the key or unique way to change the data from its encrypted form back into plain text. Encryption is a critical component of data security. It ensures that if the data is accessed by an unauthorized person, he or she will not be able to read it and thus cannot misuse it. The software 7-zip available for free at: http://www.7-zip.org/download.html can be used to compress and encrypt files. "Introduction to Data Encryption." Centers for Disease Control and Prevention. Centers for Disease Control and Prevention, 13 Jan. 2015. Web. 26 June 2015. <http://www.cdc.gov/cancer/npcr/tools/security/encryption.htm>. After the Physicians’ Reporting Forms are ready to be submitted to the CCR, an encryption process must take place to secure the PHI included in each form. Failing to do this will result in a data security breach. To encrypt a file 7-zip (or other encryption software) must be installed on your computer. 1. Open the folder containing the file to be encrypted. Encrypting Files before sending data to the Cancer Registry 9 2. Right Click the file to be encrypted and from the menu select 7-zip. 3. Once you select 7-zip, select the option Add to archive. 10 4. The following window will open. Complete the Enter password field. Make sure to enter a safe password (do not use phrases like: password, 123456, etc.). Click OK. 5. A new file will be created in the folder with the extension .7z. The file is ready to be sent as an email attachment. Multiple documents may be selected and encrypted in one folder. Please, when attaching a document to an email, make sure that the selected file is the 7Z File!!! 1 2 11 6. Send the email with the encrypted attachment to: viccr@doh.vi.gov 7. Call to the USVI-CCR authorized person to provide with the password. Never send the password via email. Abstracting: The process of collecting and recording pertinent cancer data from a health record. Cancer Registrar: Cancer data management professionals who collect, abstract, and report cancer statistics for or to various healthcare agencies Case Report: A detailed report of the diagnosis, treatment, and follow-up of an individual patient. Case reports also contain some demographic information about the patient (for example, age, gender, ethnic origin). Reference Date: starting date established for a registry, usually January 1 of a given year, after which all cases diagnosed or treated at the facility, regardless of date of initial diagnosis, must be entered into the registry. Cancer Registry Terms 12 VIRGIN ISLANDS DEPARTMENT OF HEALTH CHRONIC DISEASE PREVENTION PROGRAM VIRGIN ISLANDS CENTRAL CANCER REGISTRY Webpage: www.healthvi.gov Email: viccr@doh.vi.gov Phone: (340) 718-1311 ext. 3774, 3793 Fax: (340) 718-9505