Use of Twitter to Promote Awareness of Familial Hypercholesterolemia

Abstract

Awareness of familial hypercholesterolemia (FH), a prevalent genetic disorder that greatly increases risk of early-onset myocardial infarction, is low 1. It is estimated that of the ~1.3 million people with FH in the US, <10% have been diagnosed 1. Twitter is being increasingly used in academic cardiovascular settings 2 ; however, its potential for promoting awareness of cardiovascular genetic disorders such as FH is unknown. September is designated as the National Cholesterol Education Month (NCEM) to promote awareness of hypercholesterolemia as a risk factor, including through social media. Additionally, the International FH Awareness Day established by the FH Foundation as part of NCEM, includes a 'Tweet-a-thon' 3. We investigated whether there was an increase in FH-related Twitter activity during NCEM in September 2018, using this as a surrogate for FH awareness.

An Implementation Science Framework to Develop a Clinical Decision Support Tool for Familial Hypercholesterolemia

“…Familial hypercholesterolemia (FH), is often monogenic in etiology, remains vastly undiagnosed and untreated in the United States and is therefore an ideal use case for the development of a clinical decision support (CDS) tool aimed at improving case detection and treatment as well as promoting cascade testing [ 1 , 2 , 3 ]. Awareness of FH is low among both patients and providers [ 4 , 5 ]. Providers in both primary care as well as specialty clinics such as cardiology often perceive all cases of hypercholesterolemia similarly, failing to recognize the higher risk of coronary heart disease (CHD) and the need for familial testing when the etiology is genetic.…”

Digital health—high tech or high touch?

“…Days or weeks dedicated to certain diseases that are heavily promoted on social media may have the potential to reach out and inform (undiagnosed) patients. On the international familial hypercholesterolemia (FH) awareness day, dedicated to a chronically underdiagnosed but life-threatening disease, a significant increase in FH-related twitter metrics was observed [ 55 ]. Finally, such outreach programs can be used for patient recruitment to clinical trials [ 56 ] outside of the classical hospital-centered clinical research atmosphere in so-called remote clinical trials fostered by the COVID-19 pandemic [ 57 ].…”

Use of Social Media at Cardiovascular Congresses: Opportunities for Education and Dissemination

“…This issue is made worse by the use of ‘quote tweeting’, or ‘retweet with comment’ which is an insidious way of breaking conversational threads and excluding the original person who posted the comment. Further, journals also publish Twitter data as it is “publicly available”[ 12 ]. On the rare occasions that a speaker requests it explicitly, one should refrain from taking photographs and tweeting.…”