Guest Column | March 7, 2019

Using Social Media To Hear The Concerns Of Patients

By James Gillespie, Center for Healthcare Innovation, and David Ormesher, closerlook, inc.

Listen Ear

We are in an era of great convergence on patient-centricity. To paraphrase Nobel Laureate Milton Friedman, we are all patient-centrists now. The mantra of being patient-centric in everything great and small has proliferated. The patient perspective has emerged as an essential component of drug development, patient labeling, and assessment of long-term health outcomes. There is a recognition that, to be successful, we need to get to know patients and families, including their daily realities. Capturing the essence of the patient experience is often referred to as building the “patient journey.” This understanding will stimulate innovative solutions and drive meaningful impact.

Patients are experts on living with their condition and a drug’s impact on quality of life. For example, symptomatic relief is often more important to patients than long-term improvement or achievement of specific clinical endpoints. Patients can give drug developers, physicians, and regulators salient descriptors that accurately reflect their experiences. As clinical trial complexity increases, patient input becomes more essential, and trials are more safe and effective with a better informed, better aligned patient.

Amid an increased awareness of the importance of partnering with patients, families, and communities, pharma has created patient advisory boards and other vehicles for soliciting direct input. KOLs (key opinion leaders) are increasingly POLs — patient opinion leaders. Companies are now talking with patients, rather than at them. The term patient-focused drug development (PFDD) is increasingly used as regulatory scrutiny of clinical endpoints and patient reported outcomes grows, further incentivizing pharma to adopt patient-centric business models.

Extracting Value For The Patient

Value is a central term in healthcare. “Value extraction” focuses on the later stages of the life of a drug.1 Data, digital technology, and social media have important roles to play in this value extraction.

Similarly, we can leverage everything we have learned from the marketplace during the entire life of the drug to help inform our understanding of the patient experience. The goal of patient-centric value extraction is to elicit as much valuable information as possible and to deliver unique insight back to the company that can be used to make the discovery and commercialization of the next generation of products even more patient-centric. We want to extract value for — and not just from — the patient.

The advent of digital communication has radically shifted the position of patients from near invisibility to tangible impact. The internet has enabled new pathways for patients to find, access, and react to research. It is essential for pharma companies to listen to and understand patient-reported outcomes through a variety of vehicles (e.g., social media, survey comments, call center verbatims, personal health records). Compelling stories told by patients, families, and caregivers are data rich. Yet, while the overall availability of patient data today is impressive, much of it is decentralized and fragmented — unstructured and unsolicited.

Fortunately, the growth in data sources like social media and the advent of scientific tools like semantic analysis have substantially increased the ability of pharma to extract information, meaning, and value to further serve the interests of patients. Also, more affordable data storage technology has opened up the ability to create large repositories of data from social media, patient registries, smartphones, online data-sharing communities, and social media. Data mining and semantic analysis can be performed on calls, emails, forums, social media, and surveys; these technologies can be leveraged to analyze unstructured data from social media to gain clinical insights. The conversion can be made from data/information to evidence/knowledge and to insights/wisdom.

Benefits Of Social Media

From discovery to commercialization to a drug’s LOE (loss of exclusivity), social media data can play an essential role in amplifying the patient voice. Online groups help patients share experiences, support each other, encourage caregivers, promote crowdfunding, raise awareness, and promote products. Much of the patient experience becomes transparent in these online support groups, including complaints, symptoms, daily burden of living with and managing the disease, disease chronicity and severity, unmet medical needs, natural history, preferences regarding risk and uncertainty, and adverse reactions. Social listening involves tapping into these conversations. Not only can we learn the language patients utilize in describing their symptoms so we can talk about a disease the way patients do, but it enables us to watch conversations as they unfold.

Pharma is becoming adept at gathering patient insights from social media and leveraging them in patient recruitment, symptom identification, clinical trial protocol design, and adverse event data capture for signal detection. Specifically, social media-generated data insights can powerfully influence decisions on product development and clinical trial design strategy. Because we want endpoints to be as patient-relevant as possible, data can be used to help develop a patient-focused endpoint strategy.

Pharma can use social media to gain more insights on treatment costs/benefits, risks, side effects, and long-term efficacy. This data collection phase should extend to the late stages of a product’s life cycle and be regarded as a corporate asset and, more importantly, as a lever to increase patient voice. It should also be used to supplement real-world evidence (RWE), which is a robust tool for listening to the authentic voice of the patient. RWE includes any information that can be leveraged for decision making that is not gathered in conventional randomized controlled trials and is increasingly being used to understand the pharmacoeconomics of a therapy.

Social media is no longer just a conduit for digital advertising; instead, it has become a powerful tool that pharmaceutical companies use to identify, listen to, engage, and collaborate with patients to improve drug discovery, development, and utilization. Social media analyses are apt for an in-depth characterization of the patient experience, with one ultimate goal to aid patients in disease management.

Science Of Patient Input

We are in the early stages of creating a science of patient input. We are gaining rigor on the integration of patient perspectives and priorities across the translational research continuum. Powered by both quantitative and qualitative data, the science of patient input is cross-functional and inherently interdisciplinary. This science will be a mix of “hard” (e.g., multivariate statistical analyses on massive data sets), “soft” (e.g., cultural competency and learned empathy), and hybrid (e.g., artificial intelligence) skills. There will be increased professional identity around the science of patient input. The increasing prevalence of the chief patient officer role is one tangible, structural manifestation of this institutional inculcation of the science of patient input.

Although much of social media data is unstructured, the approach to managing business based on data insights should be as structured as possible, which will yield increased confidence in understanding the patient voice. Structured, systematic approaches to unstructured, unsolicited data can be used to drive scenario planning regarding the patient voice that is evidence-based rather than primarily dependent on anecdote and conjecture. Thus, the data regime requires continued institutionalization and routinization.

The voice of the patient perspective has clearly shifted from descriptive to prescriptive. It will ultimately make the enduring shift to normative if there is continued cultural change within pharma to hear the concerns of patients. A deep commitment to a culture of data collection, collation, and analysis yields insight-driven decision making and provides executives with more options for making the “voice of the patient” bromide come to life. Companies can create a centralized, unified database of patient input by embedding key metrics and insight-based business rules into the data collection and analysis processes. The issue is not just a better relationship between pharma and patients but ultimately translating the patient view into innovation.

The challenge then is distributing these insights throughout the organization, particularly to the R&D teams. However, once successful, disseminating proprietary market-based patient insights throughout the organization will encourage alignment around specific sources of truth and enhanced cross-functional understanding of the shared patient reality. A patient-centric culture fosters collaboration and innovation, ultimately yielding the best solutions and outcomes for patients.

The Way Forward

The future of listening to patients through social media — hearing their hopes, dreams, fears, complaints, and expectations – is bright indeed. Patients and their families want authenticity. To gain credibility and cultivate meaningful relationships with these stakeholders, pharma companies must establish trust. For those that robustly embrace hearing and listening to the patient as not just a fad but as a pathway to patient-centric business transformation, there is a tremendous opportunity for industry disruption.

Steve Jobs said, “I believe the biggest innovations of the 21st century will be at the intersection of biology and technology.” We would modify that and say we believe the most profound innovations in this century will come at the convergence of biology, technology, and the patient. Social media is and will continue to be a key linchpin synergizing these forces.


  1. Ormesher, David. Value Extraction: Mining for Gold in Late-Stage Products, Oct 05, 2017,

About The Authors:

James Gillespie is a researcher and scholar in the advanced application of analytics to address challenges and opportunities for biopharmaceutical and healthcare companies. He has published in numerous academic journals and industry periodicals, and he co-authored the book Patient-Centric Analytics in Health Care: Driving Value in Clinical Settings and Psychological Practice. Gillespie works at the Center for Healthcare Innovation (CHI) in Chicago and at the Stanford University School of Medicine’s Clinical Excellence Research Center (CERC) in Palo Alto, California.

As founder and CEO, David Ormesher provides leadership and direction for closerlook, inc, an innovative marketing partner for biopharma brands. Under his vision and leadership, closerlook has evolved from a leading digital agency to a driving force in the use of analytics to support personalization at scale, powering better relationships with healthcare professionals and better outcomes for patients. Ormesher is a frequent speaker at marketing conferences and a recognized thought leader in relationship marketing for the pharmaceutical industry. In addition to his entrepreneurial leadership, he is an active board member on numerous companies and nonprofit organizations in Chicago and around the world.