Research Requires Funding, Strategy, Infrastructure—and You
By Fiona Soltes
Meeting the needs of all of us is going to take, well, all of us.
The National Hemophilia Foundation continues its efforts to help move hematologic research forward, first for bleeding disorders and ultimately for all blood disorders. But the effort is a massive undertaking, requiring time, funding, careful strategy, extensive infrastructure and the participation of the community. The good news is that work has already begun.
Last September, NHF held a virtual State of the Science Research Summit to discuss recommendations for priority research areas, with the aim of creating a National Research Blueprint for Inherited Bleeding Disorders. The collaborative effort has also included the American Thrombosis and Hemostatis Network (ATHN) and other community organizations. Various working groups have been established.
Michelle Witkop, DNP, FNP-BC, NHF vice president, research strategy, compared the effort to cooperative working groups for oncology. “They’re very advanced in how they move research forward,” she said. The various groups develop and review protocols, and as these protocols move forward, outcomes are studied and next steps are established. “We don’t have anything like that in hematology,” Witkop said. “We’d like to start thinking from a strategic point as to how we can create that infrastructure, how we can fund it, how we can organize it. Maybe we can take some of those first priorities identified by the State of the Science summit, see what might feasible for us to do initially, and see how we can acclimate, be agile, change and adapt, and then add more on.”
On Friday afternoon, You Can Impact the Future of the Inherited Bleeding Disorders Community: The National Research Blueprint will provide updates on the Blueprint as well as further background.
Witkop will moderate the session along with Maria E. Santaella, RN-BC, MSN, CPHON, NHF director of research; presenters will include Kevin Mills, PhD, NHF chief scientific officer, and Esmeralda Vázquez, OTD, OTR/L, ATP, an occupational therapist and member of the inherited bleeding disorder community. Vázquez is also a member of the NHF SOS Steering Committee and a member of the National Research Blueprint.
It's important for consumers to not only understand research, Witkop said, but also to be engaged.
“Research isn’t just in the enclave of physicians and those in labs, working behind closed doors with microscopes and petri dishes,” she said. “What NHF is trying to do is understand the priorities of the community, and then promote those priorities so that others will do research in those areas, and we’ll be able to push that forward. Literature has shown us that when the community is engaged, when patients are engaged, research moves forward quicker. There are fewer amendments. There are fewer changes in protocols, so there’s less expense, and then the findings are translated into clinical practice much quicker. Those are all things we want to see happen.” ■
Friday, 1:30 PM – 2:30 PM
Consumer – General Interest
GRBCC: 360 ABDE//BDC Virtual Platform (Hybrid)