Research: Why Social Media is Fertile Ground for Clinical Trials

The rise of the empowered patient and increasing regulatory pressures has seen progressive pharmaceutical companies respond dynamically with new business models that include social media listening.

Although the role of social media intelligence in pharma has centered on market research and brand activation to-date, pharma companies are increasingly recognizing the role it can play in clinical trials and addressing some of the related challenges around patient recruitment and trial planning and design.

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Patient recruitment and retention via social is on the rise

Clinical trials represent a significant proportion of a product’s total development cost (up to 60% according to EFPIA) and any delays here can impact a product’s time-to-market by months, representing revenue-loss of up to tens of millions of dollars.

Increasing competition for patients – in particular for ‘rare’ diseases and niche indications, coupled with the decreasing effectiveness of traditional recruitment tactics – are driving costs up and causing delays.

The need for a faster and more globally scalable approach to clinical trials is clear, and social intelligence is a key part of the solution.

Patient recruitment for clinical trials through social media is expected to grow, with 9 of 14 companies planning to increase adoption of social media to recruit in the U.S. and 5 of 12 planning to do so in Western Europe (Tufts, TCSDD, 2014).

Based on company reports, social media are already being used for patient recruitment on an estimated 11% of all trials globally where this activity is underpinned by some level of online media monitoring.

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Leveraging social intelligence to identify and engage patients

Social listening is a key first step in effective clinical trial planning and design.

An extended monitoring program will help clarify the dynamics of the study indication area in question and thus help ensure recruitment and retention of the right clinical trial participants. Specifically,

• Identify what content formats and messages resonate with patients and caregivers to ensure we are speaking the patient population’s language (questions, concerns, areas of interest )
• Uncover where conversations surrounding the disease state and related topics are taking place, ie; the communication channels through which patients will be most receptive to trial messages
• Understand the patient journey including the key decision points along their journey
• Map the influencers in the indication area (patient organizations, advocates, trade bodies, news sites, etc) and assess who’s central and who’s peripheral to the conversation

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Driving trial participation

Once the dynamics have been established, the next step is to leverage the patient/caregiver ecosystem of influencers in order to help drive trial participation.

Insights around message and content gleaned will inform the nature of communications around study details.

These communications can then be deployed through influential channels via partnerships with patient advocacy groups and by engaging disease-based communities and influential clinical trial recruitment sites (patientslikeme.com, inspire.com).

Listening insights can also be used further upstream in study design.

Having identified the right patients, pharma companies can reach out to involve those patients in study protocol development.

Engagement in study design will likely drive better engagement and retention further down the line.

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Key challenges for pharma

As we’ve touched on in earlier posts, pharma still lags behind many other industries in social media use – primarily due to the ‘listening as liability mindset’ associated with reporting of Serious Adverse Events (SAEs).

Leveraging social media for clinical trials in particular also raises questions around patient confidentiality and privacy and data protection. These concerns are for the most part, easily mitigated.

Under current FDA guidelines, our experience is that adverse event reporting through social media channels, very rarely presents an issue for pharmaceutical companies (more on this in an earlier white paper).

Regarding confidentiality and privacy, using only consented and publicly available data, social intelligence does not contravene the ethical approach to clinical trial recruitment and doesn’t mis-use confidential information or jeopardize the privacy of individual patients.

Confidentiality is already addressed by other regulation on the use of personal data from long standing major data sources such as prescription data.

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Early pharma forays

There are a number of early efforts by pharma companies to harness digital channels for patient recruitment to clinical trials. Most tactics used centre on leveraging social media and are underpinned by some level of online monitoring.

For example, Lilly has piloted social media recruitment for trials in diabetes that achieved a “meaningful volume of responses”, and cost savings of 10-15 per cent.

Pfizer developed a ‘virtual clinical trials’ pilot, where patients used social media to influence reimbursement and direction of research (ultimately unsuccessful but Pfizer has vowed to keep trying to find the best way to harness digital for trial recruitment).

Canadian biopharma company, Qu Biologics, tapped into social media to boost trial participation for its phase I/II trials of its Crohn’s disease treatment.

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Overall it’s clear that social intelligence has the potential to uncover and engage with highly targeted patient populations faster and on a more scalable basis than is possible with traditional trial recruitment methods.

Progressive pharma companies are already taking action, refining their approaches and reaping the rewards that come with getting their product to market faster and at lower cost.

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