With patient engagement activities ramping up in the clinical trials industry, sponsors are looking at different methods to engage patients. Two popular tactics—social listening and patient panels—are being conducted more regularly to gain insights into patients’ perceptions. Both tactics are valuable to learn from: Social listening is passive listening and patient panels are active engagement.

Social listening and patient panels are two totally separate activities with different results. Social media listening, also referred to as social media monitoring, is the process of mining the internet to identify and assess what is being said about a particular subject. Although oversimplifying a complex activity, social listening is basically internet eavesdropping. Social listening results are most often assimilated into a profile. Profile reports reveal the total number of conversations that contained the disease state and on which social media channels they were found. A disease state profile will also reveal that the majority of social media conversations on the web about a particular disease state were from people who were searching for advice on diagnosis, symptoms and treatment options. It may further show that people are using online social outlets to tell their personal stories, share challenges and offer support.

The profile can also identify organizations that are using social media to promote fundraising events or solicit donations for disease research and care. This is crucial information to have if you are planning an online recruitment campaign. If the web analysis shows that the majority of people who are discussing the disease state use Facebook as their outlet, you will likely want to allocate a significant percentage of your media campaign funding to targeted Facebook ads.

There is value here for patient recruitment planning because you can see who is saying what about a particular disease state and what platforms are used most often to disseminate information. What it lacks is planning on how to engage the influencers—this is only for listening, not talking. Now you know who is saying what. You know the twitter handle of the main influencer. The next question is: How will you engage them?

On the other side is patient panels that provide information from people about their preferences and opinions. Although patient panels can be done virtually or in person, they allow for open-ended questions that dive deeper into the motivation and can ask “why.” Patients and groups that conduct patient panels both indicate that the most preferred method is an in-person focus group setting of approximately six to eight individuals. Information gained in this setting is much richer than what is found by passively listening. It involves actual conversations with people and can cover a multitude of topics including study design, patient recruitment branding and imagery, use of technology, amount of compensation or any other aspect of the clinical trial.

The in-person small group setting is designed to mimic the targeted patient population. This is active listening, whereas real engagement occurs to uncover deeper motivations, reveal trust issues, gain insight on the patient burden or refine messaging for awareness of a clinical trial opportunity. With this information the next question is, now that you have real patient insight: What do you plan to change as a result?

Both tactics answer the question: What are people saying? They simply provide the information as a passive participant or an active listener. Although both tactics are valuable, social listening is similar to looking up someone online, whereas a patient panel is meeting with people and having an in-person conversation. There is value in both. If your protocol is developed and you have a large media budget, social listening can provide information to increase the return on investment. If your protocol is in development, you may not be concerned with what people are saying online but you do want to know, from a patients’ perspective, what motivates them to participate or keeps them from participation.

Social listening is like reading a book and patient panels are like interviewing the author. Both tactics are valuable.  

Ashley Tointon has more than 18 years of patient recruitment and project management experience supporting clinical trials and the pharmaceutical industry. Currently she provides recruitment expertise, strategy and leadership as Principal Consultant of Accelerate Clinical Enrollment LLC. Email tointon@icloud.com or tweet @AshleyTointon.

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