Advancing Quality of Care for Tuberous Sclerosis Complex Patients: A Case Study of Successful Partnership


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"Advancing Quality of Care for Tuberous Sclerosis Complex Patients" was a session at the iPharma conference (May 2014) in which officials from Inspire, Tuberous Sclerosis Alliance and Novartis discussed the power of patient engagement and online patient communities.

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Advancing Quality of Care for Tuberous Sclerosis Complex Patients: A Case Study of Successful Partnership

  1. 1. !1 What is Inspire? 480,000 registered members 200 health communities 100 patient advocacy partners 2,500,000 visits per month 6,300,000 posts 900,000,000 words written A social network, organized by health condition, that connects pharmaceutical companies with patients and caregivers in a safe, permission-based manner.
  2. 2. !2 The Tuberous Sclerosis Alliance & Inspire support community A partnership designed to support patients with tuberous sclerosis and their families, and accelerate medical progress through voluntary engagement in research
  3. 3. Inspire’s partners in rare disease support & advocacy 90,000 patients & caregivers !3
  4. 4. ABOUT THE TUBEROUS SCLEROSIS ALLIANCE The Tuberous Sclerosis Alliance (TS Alliance), founded in 1974, is committed to finding a cure for tuberous sclerosis complex (TSC) while improving the lives of those affected by: • developing programs, support services and resource information; • stimulating and sponsoring research; and • creating and implementing public and professional education programs designed to heighten awareness of the disease.
  5. 5. ABOUT TUBEROUS SCLEROSIS COMPLEX • Tuberous sclerosis complex (or TSC) is a genetic disorder that causes tumors to form in vital organs, primarily the brain, eyes, heart, kidney, liver, lungs and skin. • TSC affects ~1 in 6,000 live births. • An estimated 50,000 Americans have TSC, and more than 1 million worldwide. • No two people are affected the same way, not even identical twins. • Neurological manifestations are often the most devastating – affecting almost all with TSC in some manner, from mild to severe. • TSC is the leading genetic cause of autism and epilepsy.
  6. 6. HOW THE TS ALLIANCE USES SOCIAL MEDIA •  Early Days (Pre-2010): –  Previous online discussion groups were listserv-based, completely private, difficult for constituents to utilize and to fit in, as well as challenging for the TS Alliance staff to moderate. –  Four separate listservs were focused on different constituent groups: adults with TSC, parents/caregivers, grandparents, TSC clinicians. –  500 total participants. •  The Inspire TSC online platform helped connect our community globally and across constituent groups and took the burden of moderation from staff. The Inspire TSC Community now includes 2,279 members from 81 countries as of February 28. Individuals focus on medical issues impacting quality of life.   •  Social media is now a key component of our outreach/support programs, promotional efforts and branding strategies.
  7. 7. HOW THE TS ALLIANCE USES SOCIAL MEDIA Online discussion groups provide our constituents with instant access to: –  Peer support; –  Medical information; and –  Educational materials from the TS Alliance. Inspire, Facebook and Twitter let us quickly and effectively: –  Conduct constituent surveys, research projects or crowd sourcing. –  Promote events, services and programs; –  Present the TS Alliance “brand” world-wide; –  Connect with new constituents; and –  Provide information and support as needed.
  8. 8. HOW THE TS ALLIANCE USES SOCIAL MEDIA •  YouTube allows organization to post educational and promotional videos both on our branded YouTube channel and embedded on our website. •  All social media properties allow staff to identify current trends and/or concerns and then develop additional resources to address these needs when appropriate. Inspire provides excellent tracking tools that allow us to quickly assess these trends on a monthly basis.
  9. 9. Novartis is committed to serve patients with Rare Diseases 1 !  Novartis has a heritage of commitment to rare diseases, such as TSC, focused on addressing patient needs. !  Novartis is committed to understanding and improving the lives of people with TSC through clinical research, education and collaboration with the TSC community. !  Novartis supports patient and healthcare professional organizations as well as world-class researchers to help advance disease awareness, knowledge sharing and additional research in the TSC space.
  10. 10. Inspire support community allows for targeted outreach to TSC patients & caregivers 1 Insights ! Generating patient/caregiver insights and understanding of patient needs through anonymous online surveys Education ! Disseminate educational materials around TSC disease state to TSC community through one-way email outreach Support ! Share information about Novartis products and patient support services