Fast Facts from Thought Leader Select—Trends in Epilepsy Advocacy Involvement

According to CURE Epilepsy, epilepsy affects 50,000,000 people worldwide ( This disorder can be debilitating, and finding the ideal treatment can improve patients’ quality of life significantly. In addition to patient advocacy groups, health care professionals (HCPs) are often involved in advocating for the rights of individuals with epilepsy, including educating patient groups about the disorder and possible treatment options, lobbying governmental bodies for affordable healthcare and research dollars, and actively fundraising for money to find a cure. Some HCPs lead their peers in advancing medical science to understand epilepsy better and to find new therapies that will improve quality of life. These thought leaders are often highly involved in advocacy efforts.

Thought Leader Select is a firm that specializes in delivering objective, validated data on the skills and experiences of key thought leaders, so that biopharmaceutical companies can seek their appropriate advice and guidance in the development of new medicines. Over the past several years, Thought Leader Select has studied key opinion leaders (KOLs) in the treatment of epilepsy and their involvement in many areas, including clinical research, treatment guidelines involvement, publishing, reimbursement involvement and participation in advocacy efforts. In a recent assessment of over 200 global epilepsy KOLs, Thought Leader Select analyzed their participation in patient advocacy activities. Using keywords to link these thought leaders with such activities, Thought Leader Select found that 89% of epilepsy HCPs are regularly involved in patient advocacy efforts, such as participation in advocacy organizations, patient education or legislative efforts (see Chart 1).

Of the 181 KOLs with advocacy involvement, the majority participates in five or fewer activities, while 10% of thought leaders boast 10 or more advocacy activities (see Chart 2). In addition to activities through the International League Against Epilepsy (ILAE) and national epilepsy associations, such as the Epilepsy Foundation of America, top advocacy initiatives and organizations include:

-Educational articles, brochures, websites, CD-ROMs, speeches, and seminars for patients with epilepsy

-Petitions and other legislative efforts to improve health coverage, benefits and safety for patients with epilepsy

-Radio and television interviews on epilepsy topics

-Citizens United for Research in Epilepsy (CURE)

-Epilepsy Research Foundation

-World Health Organization’s (WHO) Epilepsy Project

About Thought Leader Select

Thought Leader Select serves the biopharmaceutical and healthcare industries, as well as the medical community at large by assessing medical experts (known as “thought leaders” and “key opinion leaders”) within a host of therapeutic areas such as diabetes, oncology, and neurology.

Over two dozen of the top 50 global biopharmaceutical and healthcare companies count on our expertise when seeking to launch new medications for better public health, ensuring that they are collaborating with the right medical professionals for the right reasons—their skills and experiences.

Media Contact:
Brian Castle
Director of Global Marketing and Client Relations

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