PowerPoint

Patient-centric social media for outcomes and pharmacovigilance considerations: The time has comeBrian LoewFounder & CEOInspire

Greg PowellDirector, Safety Evaluation and Risk ManagementGlaxoSmithKlineJulie FlygareFounderProject Sleep

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Medical-centered Journey

Patient-centered Journey

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#Connected PatientsPD-L1 Immunotherapy Clinical Trial

72 hours post first immunotherapy and feeling great with no side effects that I can feel but a surprising rather quick response (I hope) is that I have been bleeding for the last several months from the upper vaginal tumor and today no bleeding. It may start up again but for the last 18hours nothing.

My husband is also looking into this trial. Do you know if your tumors tested positive or negative for PD-L1?

Yesterday I got news that my CT after chemo was complete shows increasing metastasis throughout chemo. The Dr asked me if I had heard of any clinical trials and specifically mentioned immunotherapy and as of yesterday had not heard of it. Now today, I stumble upon this gem of a conversation and see all of this wonderful info and inspiring people. Thank you for sharing your experiences, they really do help others.

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#Patient Reported Outcomes

Can you please share your Cosentyx side effects? Hair loss? Nausea? I have never been on a biologic so not sure that insurance will cover it but I'm thinking about Cosentyx....is this a good route?.

I've been on Cosentyx for a month now and the only side effect that might be attributed to Cosentyx is a bit of fatigue the day after injection. It's been great so far. My PsO is much less and it has helped my PsA a very small amount.

I have been taking Cosentyx for almost a year. My psoriasis is gone and the arthritis is almost gone. I have had no side effects at all. This drug improved my quality of life immensely. Good luck!

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Through natural language processing of anonymized data, we are able to uncover insights about adverse events, medication routine adherence, and many others related to the patient journey and health experience.

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Patient-centric social media for outcomes and pharmacovigilance considerations: The time has comeGreg Powell, GSK

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Digital WorldProject CRAWL Contextualization of ReAl-World Drug Use Through Social Listening

DIGITAL MEDIA AS A MAINSTREAM COMMUNICATION CHANNEL 38 years for radio to reach 50 million users 13 years for television to reach 50 million users 1.5 years for Facebook to reach 50 million users

85% of adults use the internet6% of adult internet users have posted comments, questions or information about health or medical issues on a website of any kind3-4% of adult internet users have posted their experience with health care service providers or treatments in the previous 12 months

Social Media Adoption

Treatment Discussion

Patients Insights

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How can we listen to what patients are saying online?

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Project CRAWL OverviewContextualization of Real-World Drug Use Through Social Listening

Publically available data is collected from multiple sources (Facebook, Twitter, Internet chat rooms)

System filters out noise, highlights important information, and supplemental data is added (spontaneous data, etc.)

Users can interactively explore the information using an easy to use interface that helps facilitate the review process

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#Key Learning (so far)Quantity of data A PEW study found that 3-4% of adult internet users have posted their experience with health care service providers or treatments in the previous 12 months. A study completed by GSK showed 22 million potential adverse events for about 1,000 drugs (publically available Facebook and Twitter posts, English language only). For comparison, the FDAs FAERS database has ~6 million adverse event reports since 1968.Timeliness of the data Traditional data can lag behind (9-12 months for observational data)Social listening data is usually available within hours from the time the person posts their comments onlineGeographic diversity of the dataTraditional data is US and European centric.Three of the five largest users of the internet are Asia, Latin America/Caribbean, and Africa

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#Key Learning Drug SpecificPotentially valuable clinical insights~26% of people discussing drugs will talk about efficacy/benefitsTime to onset, complete/partialWithin context of cost, other treatment options, access challengesHow does this improve their quality of live/average daily living6% of people discussing drugs will seek medical advice 50% efficacy related25% safety relatedOTC (GSK example)Real world benefitsCan patients effectively self-manage medical conditionHow real-world use differs from the products labelDrug abuse/misuse (GSK example)Encourage/discourage useBest route of administrationWhere they get the medicationAnticipated effectsHow to combine with other drugs

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Product Complaints

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#Key LearningDisease Specific

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#Limitations Causality & veracityPatients may not correctly assess causality. Can system be gamed?

BiasHow are people who post online similar/different than general population?VolumeVolume of reports likely to be large. Privacy & generalizabilityPatient privacy expectations and fear of government oversight. Regulation unclearWhen is there an obligation to monitor or report?

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#Conclusion

Social Media is an important new datasource that may offer important clinical insights that can potentially benefit the healthcaredelivery system

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A Patient Perspective:Patient-centric social media for outcomes and pharmacovigilance considerations

Julie Flygare, JDFounder, Project Sleep@REMRunner

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Why do patients go online?

#Pre-diagnosis, post-diagnosis and moments of crisis or changes later on that get one looking for answers, other approaches.

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What do patients get out of being online?

#Huge sense of connection (often unexpected benefit) and also sharing invaluable practical information.

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#As a patient, often feel like no one is listening. For me, I think I might actually share more publicly if I thought someone was listening. Would you share your experiences publicly IF you thought someone was actually listening?

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Social Media v. Real Life

#Note that social media is not necessarily the "real world. Oversharing or not providing complete story, people in moment of crisis are not always the most articulate in sharing their circumstances, can be hard to fully know whats going on for someone else. Shouldn't be confused or used in place of consulting patient experts and caregivers directly through panels, patient advisory roles.

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#Someday could the internet facilitate more REAL-TIME important conversations between different stakeholders in healthcare? If regulations allowed it, could information be more accessible from industry and insurers? Example of Ask TSA demystifying rules of TSA.

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Thank you for your attention!

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