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Research has helped rewrite that scenario, and continues to shape the future for those with bleeding disorders. That was the topic of Santaella’s presentation, You Hold the Key: How Your Experience Can Shape Research.
“There is so much to be done,†Santaella said. “How can we help advance science? We all have the power to contribute to science, whether a scientist, a researcher, a clinician or a patient. Without the whole team, advances wouldn’t be possible.â€
NHF has focused its research primarily using surveys, Santaella said. “Anything that we conduct or hear that is important, we first publish out the findings. One of the most important aspects of research is not just doing research, and that’s it. It’s disseminating the information, contributing to the body of knowledge so that others can build upon what has been found before.â€
Participants can influence research by participating in NHF’s CVR program. Consumer Voices in Research, formerly known as MyBDC, collects information through electronic surveys. Participants can include patients, parents, siblings and grandparents. “Most importantly, it helps identify research priorities,†Santaella said. “I’m here to tell you that your voice as a person or family member of a person with a bleeding disorder is more important than you think.â€
CVR is a community survey, a “way to gather information directly from the community that is not filtered through any health care provider or research associate. In turn, we provide a tool so that those participants who are actually volunteering their information get something back.â€
CVR provides insight into the experience of living with a bleeding disorder from the view of the affected participant and their family members. It also provides a way to “check the pulse, to see how the community is navigating a health crisis,†Santaella said.
This can help identify new areas of research and shape future projects.
Participants are assured of privacy; the CVR has received a certificate of confidentiality from the National Institutes of Health. This protects privacy of CVR participants, Santaella said. In addition, data is reported only in aggregate and is maintained using industry standard security measures.
Participants can conduct their own research from their CVR dashboard to see how their experience stacks up with others in the group. Learn more at www.hemophilia.org/research/community-voices-in-research. â–
