Purpose of the Study
Northwell Health’s Department of Occupational Medicine, Epidemiology and Prevention has partnered with the Firemen’s Association of the State of New York (FASNY) in a unique opportunity to find out how many members of the volunteer fire service in New York State have developed or died from cancer. In addition to supporting presumptive cancer legislation to protect volunteer firefighters who develop cancer in the line of duty, this information will be invaluable for the creation of prevention and treatment programs that benefit firefighters.
Cancer presumption allows disability or other compensation for firefighters who develop cancers in the line of duty that are presumed to be caused by exposures resulting from their work as firefighters. Using the same methods as previous research studies of career firefighters, this will be the first study of cancer risk in volunteer firefighters in the US. The study will require an unprecedented level of participation and trust from volunteer fire departments throughout New York State.
Study Data Sources
By law, cancer diagnoses and cause of death are recorded in every state. This information is available to researchers who have proven that they are approved to do a research study that requires this information for individuals and that they can protect the confidentiality and privacy of individuals’ identities and health information.
- The Northwell Health Firefighter Cancer Study team is authorized to submit a list of names and other identifying information for individual volunteer firefighters – active, former, or deceased – to the agencies with cancer and death records.
- These agencies are permitted to report any “matches” of cancer diagnoses and deaths with this list to the study team and won’t do anything further with the list submitted. They do not keep the list, do not contact anyone on the list, and will not use the information for any other purpose.
- The Northwell Health Firefighter Cancer Study team is not asking for any personal health information, such as cancer diagnosis, from fire departments or firefighters; the only health information obtained will come directly from the following state and federal agencies with cancer and death records:
- New York State Cancer Registry
- National Death Index
Partnership with Fire Departments throughout New York State
Each department’s information is crucial to doing the best possible study for all volunteer firefighters in New York State who are so deserving of comprehensive cancer coverage and programs.
Our researchers understand that making the roster of all department members is time-consuming and that releasing any personal information can seem very risky in this day and age. There is absolutely no room for error when protecting firefighters’ private information. The team is obligated by the Ethical Research Board at Northwell Health and at the New York State Department of Health to ensure the confidentiality and privacy of all data we collect. Our team takes this responsibility extremely seriously and has a strong track record of protecting workers and their data.
The Northwell Health Firefighter Cancer Study team will use every data security precaution available, including:
- NOT requesting Social Security Numbers
- Never contacting individual firefighters or their families for any reason
- Using a research data storage system with the highest security protocols (REDCap, see FAQs for further information)
- Only reporting completely de-identified data (no individual firefighters’ or fire departments’ names will ever appear in any report from the study)
- Not using or sharing the data for any other purpose
Please consult with your fire district manager or attorney about NY laws governing the release of personnel information that may affect your department.