Orlando Agrippa, Founder and CEO of Sanius Health, and Oliver Shastri, team lead for sickle cell disease at Pfizer, discuss how social media can foster community for sickle cell disease patients.
Sickle cell disease is a disorder in which red blood cells become “sickle”-shaped and can not move easily. As a result, blood vessels can be damaged and/or block blood flow throughout the body. This can cause a plethora of serious problems such as stroke, retinopathy, infections, and pain crises.
Social media can be a valuable resource in the medical field due to honesty and transparency of patients that may not occur in a physician’s office. This may be attributed to social media’s ability to foster community and connect with others who have similar experiences. The information created by patients online can help researchers and physicians know where there may be gaps in accessing proper treatment and care.
Social Media Listening Study
Shastri and Agrippa conducted a social media listening study to gather insight on sickle cell disease patient health concerns, experiences, and caregiver perspectives. Sites that were monitored included X (twitter), Instagram, TikTok, Facebook, Forums, blogs, and Youtube. The research was conducted over a twelve-month period where around 46,000 posts were identified, along with their interactions. Over 500 of these posts were analyzed further for theme and sentiment.
Six key themes emerged from the study:
- Management of sickle cell disease within the UK National Health Service
- Living with sickle cell disease
- Importance of community
- Burden over lifetime
- Awareness of sickle cell disease
- Access to treatment
In terms of sentiment, most posts were neutral, but negative sentiment vastly outweighed positive.
As Dr. Shastri explains, this evidence can help reduce the health inequity currently faced by sickle cell patients. While this study only identifies the problem, advocates for sickle cell disease are hoping that by increasing awareness of the disease and this problem, changes will begin to be made. The end goal is improvement of access, outcomes, experiences, and quality of care.
For more information on sickle cell disease and other rare hematologic disorders, visit https://checkrare.com/diseases/hematologic-disorders/
