The Case for Online Consumer Recruiting

Over the past few years, recruiting for consumer healthcare market research has undergone a drastic change. In the past, pharma clients would take their business questions to their research vendors, who could easily leverage panel companies to fill the desired project samples and ultimately deliver successful insights back to their clients. As the industry has shifted its focus to oncologic conditions, rare diseases, orphan drugs and otherwise underserved populations, vendors are struggling to access these small, unique patient populations, resulting in partial, or even total, failures in fielding. I recently addressed the issue of online consumer recruiting at the 2017 Pharmaceutical Market Research Group (PMRG) Institute.

Healthcare in the U.S. is becoming more consumer-driven with patients playing a greater role in the management of their health. At the same time, patients are using personal technology to understand and maintain their health. Social media is situated at the intersection of these two dynamics, and platforms like Inspire offer patients and caregivers a valuable source of information and support.

According to the Pew Research Center, 88% of American adults were internet users in 2016.Further, 79% of these users are on Facebook, equating to 69% of the total U.S. adult population.2

Other research from Pew showed 72% of internet users sought health information online in 2013. Among the most commonly researched topics were specific diseases/conditions, treatments/procedures, and doctors/other healthcare providers. Interestingly, 50% of health information research was done on behalf of someone else.3 A 2012 Social Media Consumer Survey from PricewaterhouseCoopers’s Health Research Institute showed that, among people seeking information on social media, 40% say that what they found affected the way they deal with their health.4

Unfortunately, there is a misconception that patients and caregivers who are active online are “exceptional” and do not represent the overall population. To change this perception with PMRG Institute attendees, I shared blinded results from a 30-minute survey administered to both members of Inspire’s online community as well as a traditional, opt-in research panel to understand the treatment experiences of metastatic breast cancer patients.

Overall, respondent demographics were fairly consistent across the two channels. Inspire members were slightly more educated than the panelists while the research panelists had higher average household income levels, were more independent (did not have the assistance of a caregiver) and had a higher proportion of respondents with private insurance than Inspire members.

The survey covered key business questions of interest to most pharma clients. For example, one area assessed in the survey was “Likelihood to Search for each Brand Online” with a list of products in the client’s competitive set. Across nine brands, the Top-2 Box scores for the online patients were, on average, within <2% of the “offline” panelist population: searching for brands on the Internet was similar for the online and offline cohorts.

When asking about the “Likelihood to Discuss Each Brand with a Doctor,” there was again little difference between the two patient populations with an average difference in Top-2 Box scores roughly 1.9% higher among the online group.

Further questions about common call-to-action items revealed similar behaviors between the two cohorts. The only significant difference was between survey respondents’ product awareness. Given the exchange of information between Inspire members, coupled with sponsored advertising on the site, this online patient group had significantly higher unaided and aided awareness levels for each product in the competitive set than the offline patients from the research panel. In addition to overall treatment awareness, we assessed individual product message awareness and found it to also be significantly higher among the online population.

Following my presentation, Allison Moore, CEO and Founder of the Hereditary Neuropathy Foundation (HNF), shared what members of their online communities had accomplished.

HNF is an Inspire partner and rare disease organization whose three-fold mission is to increase awareness and diagnosis of Charcot-Marie-Tooth (CMT), support patients and families with critical information to improve quality of life, and to support research and clinical trials that will lead to treatments and cures. The HNF community on Inspire, called the “Charcot-Marie-Tooth Support and Discussion Community” currently has over 5,000 members.

HNF compiled community member comments and responses to a poll to create a groundbreaking patient-reported outcomes (PRO) survey in collaboration with a pharmaceutical company. Moore said the survey yielded over 1,100 responses from CMT patients and caregivers and revealed previously under-reported symptoms associated with CMT. Taking what it has learned thus far, Moore said the HNF seeks to execute additional PRO studies with its online patient communities to create a robust CMT patient registry.

Finding unique populations of patients and caregivers for successful research projects is a challenge for pharmaceutical companies and the life science industry. Yet, the metadata is definitive: patients are turning to online sources for information and support and are self-organizing in a useful way. Ultimately, patients are becoming more engaged in their healthcare showing that years of patient-activation initiatives by the pharmaceutical industry are paying off.

In summary, online patients are not “exceptional”, but in fact, they are representative of the overall patient population. Online patients are different only in that many of them may be more aware of pharmaceutical brands, companies and recruiting efforts.  Finally, these organized communities have the potential to reveal new ways to engage with patients and caregivers for the purposes of recruiting, marketing and research.  Online patients represent the new normal, and at the end of the day, the patient experience is the same whether they are online or offline.

See our case study “Finding the Rarest of the Rare For Market Research”

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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.