Knowing What to Do for Sickle Cell Patients Is Not Enough

Posted November 30, 2015 by Elissa Faro, PhD

Elissa FaroSometimes, even when we have guidelines and evidence-based practices to improve care and outcomes for individuals, it isn’t always enough. 

We know hydroxyurea can help treat sickle cell disease, yet not all eligible patients are getting prescribed hydroxyurea. We know that the faster sickle cell patients get triaged and administered medications for pain crisis, the better their health outcomes, yet many patients are not given appropriate doses of medications quickly enough for a variety of reasons, not least of which is patient-provider distrust.

Guidelines for treating sickle cell disease are not enough, we need to take them a step further. How can we ensure these life-saving practices are reliably implemented for every patient, every time? How do we get this information to the people who need it, in a format that they can use?

That was the focus of the American Society of Hematology’s (ASH) Sickle Cell Disease Implementation Stakeholder Meeting in Washington, DC earlier this month. As the project lead for NICHQ’s Sickle Cell Disease Treatment Demonstration Program (SCDTDP), I, along with my colleague, Suzette Oyeku, MD, MPH, met with a diverse group a stakeholders from around the country to discuss how to more broadly disseminate the National Heart Lung and Blood Institute’s sickle cell disease management guidelines—to ensure these life-saving practices are reliably implemented for every patient everywhere.

There were many great, informative, and galvanizing conversations during the day-long meeting, not the least of which was when Edith Mitchell, MD, FACP, the new president of the National Medical Association, invited representatives from the ASH meeting to join their national conversation. Yes, we were all there because of a shared sense that the system lacked overall coordination. It seemed everyone at the meeting was doing something to disseminate the guidelines, yet few were working together. Many faced the same basic problem of identifying doctors who need this information, yet our efforts weren’t linked. The meeting organizers left participants with this charge: “we will all need to work together to ensure effective implementation and dissemination of the most promising activities.” Of course, this is easier said than done.


One step we are taking at NICHQ in this, the second year of the SCDTDP, is to develop communications strategies for stakeholders across the sickle cell community, including how to disseminate best practices from the work of our regional networks. We’re talking with doctors and hospitalists and patients to find out what they need and how they like to receive their information. We will work with ASH and others, such as the Office of Minority Health, to coordinate and align communication efforts across groups. Hopefully, this will help us more effectively spread our best-practice knowledge—along with the guidelines—to as many providers, patients and other invested professionals as possible.

It will take an enormous, coordinated effort of diverse federal agencies, professional organizations, non-profits and medical professionals to ensure that sickle cell patients receive the best care possible—the care they deserve. I believe we are taking important steps to make sure this happens.


Learn more about NICHQ's work to improve care for individuals with sickle cell disease



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