Stephen Agyenim-Boateng, PharmD, RPH, is a medical consultant and board member of the non-profit organization, Sickle Cell 101.
Sickle Cell 101 provides a global platform to provide educational content and resources for the patient population. They also conduct engagement interactions to better understand patient experiences in the sickle cell community. This information can also be shared with for healthcare providers so that they have a better understanding of the patients’ experiences.
As Dr. Agyenim-Boateng explains in this video, some of the patient input can be of great benefit to health care providers and health care professional. Dr. Agyenim-Boateng said, “an example would be patients talking about their experience taking a specific kind of drug or the experience going to the emergency room.” Quantifying these patient experiences can help providers better understand what is happening in the real sickle cell disease community.
Sickle cell disease is a group of genetic blood disorders that leads to red blood cells being unable to function properly. More specifically, persons born with this condition have abnormal hemoglobin that results in their red blood cells being fragile, sticky and crescent-shaped (i.e., sickle shaped). In addition to the chronic anemia that afflicts these patients, the sickle-shaped cells often get stuck in smaller vessels and that can lead to a plethora of problems, including pain crises.
For more information, visit https://www.sc101.org/
