10:10 - 10:55 amSaturday, September 17
LK 101
Patient-centric social media for outcomes and pharmacovigilance considerations: the time has come
LK 101
Patient-centric social media for outcomes and pharmacovigilance considerations: the time has come
CEO, Inspire
Medicine X ePatient Scholar
Patients and caregivers use social media to share health and medication experiences, as well as to seek advice and support. Health care providers are increasingly turning to social media (Doximity, Sermo),... Read more

Description

Patients and caregivers use social media to share health and medication experiences, as well as to seek advice and support. Health care providers are increasingly turning to social media (Doximity, Sermo), to gain insights from their colleagues about how to best care for patients. Other interested parties, pharmaceutical and research companies working to deliver better and safer tools to the healthcare team, are regularly searching to better understand from patients and providers how to make a meaningful difference while keeping safe and effective products on the market.

Through the use of de-identified Big Data from online patient forums open to healthcare providers, the pharmaceutical industry may glean useful insights into both the safety of existing products as well as future needs of patients. Post-marketing safety surveillance for pharmaceuticals currently relies on data from adverse event reports to companies or regulatory authorities, medical literature, and observational databases. Together these sources provide some insight into everyday product safety or risk, but the unique insight the patients themselves can offer is also highly desirable.

Using insights from a 2016 research project involving Inspire, GlaxoSmithKline (GSK) Pharmaceuticals, and Epidemico, an innovative informatics company, we are exploring the use of social listening data for pharmacovigilance and other R&D concerns. A core question is, “What valuable insights can we glean from social listening to help improve patients’ lives—whether through improved safety, more relevant clinical trials, or research and development of new treatment options?”

Through social listening, publicly available social media data can be analyzed for a variety of insights into patients’ perspectives, including study endpoints of concern to patients, greater understanding of patients’ unmet needs in a therapeutic area, and areas of misinformation or lack of information about appropriate product use.

The integration of mainstream social media data (such as Twitter) and other data sources with deep and rich patient voice, and sentiment data, creates a unique addition/enhancement to the “everyone included” approach to healthcare. With over 800,000 members across 3,000 health conditions, Inspire has one of the largest patient cohorts, which has generated over a billion count of multi-dimensional unstructured data.

Presenting the combined experience as well as research findings will help conference attendees understand how healthcare social media can be harnessed to the good of many stakeholders. This collaboration is a step forward in the “everyone included” approach. Our goal is for patients to better understand how they can participate in the discussion through social media and help shape the future of their care. We hope for healthcare providers and other interested parties to gain insights into how this technology can be used to improve their care of patients.

Brian Loew created Inspire with the goal of improving patient engagement through the creation of a trusted, health-focused social network. Today, Inspire's 85 health association partners and over 360,000 members provide fertile ground for medical research, patient insight and health advocacy.

Brian believes that patient contributions to medical progress have been historically undervalued, and great progress may result from fully valuing contributions to medical research derived from the active involvement of patients.

Julie Flygare, JD, is the founder of Project Sleep, a leading narcolepsy spokesperson, author, runner and blogger diagnosed with narcolepsy with cataplexy in 2007. She received her B.A. from Brown University in 2005 and her J.D. from Boston College Law School in 2009. In 2012, Julie published “Wide Awake and Dreaming: A Memoir of Narcolepsy,” which won the First Prize Biography/Autobiography Award at the San Francisco Book Festival 2013.

Julie has spoken about narcolepsy to scientific researchers, doctors, nurses, college and medical school students, NIH, FDA and CDC representatives. Her story has been featured by Marie Claire, the Doctors Show, ABC, NBC, Psychology Today, Huffington Post and the Discovery Channel. She is the creator of the NARCOLEPSY: NOT ALONE international awareness campaign and first-ever scholarship program for students with narcolepsy. Julie currently works as a writer at City of Hope in Los Angeles, CA. In her free time, she is training for a marathon, speaking across the country and managing Project Sleep, her dream job.

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