The real world online–Understanding and using patient-reported real world evidence from social media
Next week, I will be presenting at the Patient Registries and Real World Evidence Summit in Miami. The focus of the conference is Real World Evidence (RWE) in drug development, FDA approval and payer reimbursement. Beginning with an overview of patient and caregiver activity on social media, my session will explore the use of content created by patients and caregivers on social media as RWE.
From my experience as a sociolinguist and social media researcher, I’ve found that patients and caregivers are online to seek other’s experiences, to find information about their condition, to search out treatment options and to educate others. In short, they are looking for the information that is most relevant to them, from sources they believe to be the most credible, which are often other patients or caregivers.
When are people online during the patient journey?
Early in their journey, people explore the Internet and social media to find the symptoms they are experiencing. At this point, undiagnosed individuals are information seekers. Once they have been to a physician and received a diagnosis, newly diagnosed patients add support-seeking to their information-seeking behavior.
Along the journey, at treatment decision points, patients look for information and for other people’s experiences on the web. Patients also turn to social media when their health status has worsened, again combing social media for support and information. Throughout the journey, patients and caregivers pursue recommendations for hospitals, physicians, treatment and clinical trials.
Where do patients and caregivers go online?
There are online support communities, like those on Inspire, where patients and caregivers document their individual stories and experiences.
Patients and caregivers can also be found on social networks that function as public broadcast sites like Twitter and Facebook. These are mainly used to raise awareness as well as to find and share news and information.
When patients are interested in chronicling the journeys of their health, they tend to choose sites and channels like blogs and YouTube vlogs. Finally, multi-media sites like Instagram, Pinterest and YouTube are where patients and caregivers seek and share inspiration and awareness.
Advantages and disadvantages of working with social media data
Social media provides an authentic perspective of the patient experience. The content is high quality, it can be rapidly collected and there is a lot of it. But, that abundance is also a disadvantage. Social media is bountiful but unstructured content. Providing structure and gleaning understandings from it requires skill.
Unfortunately, social media data is also, largely unverifiable. Cases of cancer fraud where people claim on social media to have cancer do occur.
Practically, there are privacy restrictions which can limit accessibility to data and limitations in terms of direct follow-up and longitudinal research opportunities.
Even so, social media provides access to Real World Evidence about the patient journey, including patient journey mapping. It can be used for feedback on clinical trial design and Inspire has employed social media for pharmacovigilance.
My presentation concludes with a look at pharmacovigilance research using Inspire patient and caregiver de-identified posts, conducted in collaboration with Stanford University. Download the case study to learn more.
Monica will be presenting in a plenary session at the Patient Registries and Real World Evidence Summit at
9:30 a.m. on Wednesday January 30, 2019 at the Atton Brickell Miami
STANFORD-INSPIRE CASE STUDY: The Real World Online — Understanding and Using Patient-Reported, Real World Evidence from Social Media
If you are attending this conference, please join Monica’s session.
Inspire offers a trusted community to patients and caregivers. Our goal with this blog, this website and our content is to provide the life science industry access to the true, authentic patient voice. In so doing, we support faithful operationalization of patient-centricity. Take a look at our case studies, eBooks and news outlet coverage.