What if in 20 minutes you could help improve the lives of everyone in the bleeding disorders community? It is possible if you let your voice be heard. The time is now. The CHOICE Project survey is ready. Take it online, on paper in English or Spanish; make the CHOICE and use your voice.
Through a cooperative agreement with the Centers for Disease Control and Prevention (CDC), HFA is running the CHOICE (Community HavingOpportunity to Influence Care Equity) Project. The focus of the CHOICE Project is to collect information regarding health experiences of people who have a doctor-diagnosed bleeding disorder and do not receive care at a federally-funded hemophilia treatment center (HTC). HFA is asking everyone in the bleeding disorders community to participate in this Project by taking the CHOICE survey.
Together HFA and the CDC hope what is learned will help assure equity in the care received by all members of the bleeding disorders community. The more participants enrolled in this project, the more information HFA can gather. With more information, HFA has a better chance of learning what it and its chapters can do to improve the health of people with bleeding disorders. This includes possibly identifying medical and social issues that require further study. There is power in this knowledge, power to change lives, improve medical care, and help assure access to the services people with bleeding disorders need.
Since 1998, CDC has collected information on the health status of people with bleeding disorders who receive care at HTCs. Much has been learned from this information. However, a study from the mid-1990’s showed that a third of people with bleeding disorders received care outside of the federally-funded HTC network. Little is known about the health experiences of people who do not receive care at federally-funded HTCs. So HFA and the CDC decided to learn more through the CHOICE Project.
HFA member organizations are a key component to the CHOICE Project’s success. HFA has teamed up with seven of its member organizations in Texas, Illinois, Arizona, New Mexico, and New York to help it identify people to take the CHOICE survey. The survey itself is available in English and Spanish and takes roughly 20 minutes to complete. People can take the survey online or in paper format.
The CHOICE survey asks questions about diagnosis, bleeding history, treatment, insurance coverage, quality of life, and quality of care. The information collected from the survey will be used to understand the health of people with bleeding disorders who do not receive care at federally-funded HTCs. It will also be used to identify issues that need further understanding, such as where care is being obtained, what complications are being experienced, and what treatment is being used.
Personal privacy of the survey-takers is of the utmost importance to HFA. The CHOICE survey does not collect any personal information. HFA will compile paper-based surveys into this database and will shred and recycle the paper documents. Data shared with the CDC will not contain personal identifiers such as name or address because this information is not collected. Information from this project may be published. However, no information will be published that could identify a survey-taker.
If you have a bleeding disorder, your voice should be heard – no matter where you get your care. You matter and it is your choice to participate in the CHOICE Project. To find out how to take part in the CHOICE project, call 800-230-9797 or go to choice.hemophiliafed.org