Pharmaceutical companies investing in real-world evidence (RWE) to support R&D are reaping the rewards, according to a recent study by Deloitte1. The benefits of using RWE have steadily expanded from commercial settings into development, approval and reimbursement. Today, compelling RWE can be critical in determining product success or failure.
That’s why most pharmaceutical companies expect to increase their RWE capabilities, by partnering with other stakeholders to access new kinds of real-world data (RWD), according to the survey.
RWD comes from a variety of sources, each with strengths and weaknesses2. Collaborations are critical to ensure access to high-quality data from across the entire suite.
Electronic health records offer clinically verified, longitudinal health outcomes data, but limited insight into patient experience. They are also tricky to integrate from across different providers. Claims data is excellent for tracking medication prescriptions, dosages and co-morbidities, but cannot reliably determine which drugs are actually swallowed, why patients may stop taking them, nor how burdensome the regimen is for individuals.
Social media stands out for its ability to capture patient-reported experiences related to disease management. Online sources provide authentic patient voices, free from the pre-determined clinical- and symptom-categories used by physicians and providers. Social media-derived RWE allows pharmaceutical companies to hear their customers’ attitudes toward a particular condition and treatment options, as well as their product-use experiences. These insights are becoming increasingly valuable as regulators and payers encourage greater use of RWE. 3,4
Social media also offers cost-effective access to the views of a rapidly growing number of patients from across all corners of the globe. A 2019 survey showed that over half of patients in Europe were seeking health information online5; the COVID-19 pandemic in 2020 means even more are likely doing so today. The Pew Research Center reports that seven in ten Americans use social media at least once a day to connect to one another, and to seek and share information.6
No data source is free of bias. Yet social media sources overcome some of those that hamper standard market research methods like interviews and focus groups. Few people would comfortably share intimate health stories in a tight in-person setting. Patients are surprisingly willing to disclose personal experiences online, though, in their quest for information about particular therapies, and what other consumers are saying about those treatments. Many people also seek help in managing a condition, and connection to those in a similar situation.7
There is a growing body of research into what impacts people’s willingness to disclose information online. Self-censure is, perhaps unsurprisingly, dependent on the type of audience (friends or strangers) and the degree of anonymity.8 Anonymous platforms such as discussion forums tend to reduce levels of self-censorship, making it more likely that people expose their most intimate “moments-of-truth”. Anonymous sources will likely grow in importance, because self-disclosure – getting something “off one’s chest” - is shown to be rewarding, and to boost mental and physical health.9
Social media data has weaknesses: reported health outcomes and diagnoses are not clinically verified; many “voices” may not be those of real patients. Human memory is fallible, and no-one is free of bias, including around one’s own situation and performance.
In spite of these drawbacks, social media stands out for its authenticity and scope. It captures the un-filtered experiences of millions of patients across the world, in their own voices and languages, and through their chosen channels. It offers unparalleled insights into what matters to patients, in something close to real-time.
Many people, including patients, want to share their experiences with peers online, and to seek help and emotional support in managing their condition. Meanwhile, sponsors want to optimise their products to meet patient needs.
Social media-derived RWE ensures that those drives are aligned, and is therefore a vital component of pharmaceutical companies’ RWE portfolios. It complements and enhances more traditional RWE sources by identifying patient preferences and concerns. Social media-derived RWE is thus unrivalled in terms of authenticity and in terms of its ability to capture the real experience of patients. Compelling patient-focused real world evidence can inform drug development activities and ensure that resulting products address patients‘ unmet needs and have a positive impact on their lives.