Privacy at Risk: Legal vs. Ethical Practices

As part of our growing focus on Life Sciences at Investis Digital, we are opening up our blog to expert guest contributors on the topic. Today, we are featuring a guest post by Gregg Sweet from The Harte Group, writing on the legal and ethical practices of patient recruitment.

As a 24+ year veteran of centralized patient recruitment operations I am often amazed at how far we’ve come since the days of traditional mass media campaigns but am even further amazed at how data privacy seems to straddle the legal line in many advertised recruitment campaigns. We have witnessed recent strengthening of global and regional regulations such as GDPR, the Common Rule, ICH, HIPAA and other data collection and consent rules, as well as country and state specific guidelines. It seems as though we, as an industry, have lost a step in informing our prospective volunteers about the ins and outs of advertised studies before directing them to a pre-screening qualification that has their personal information auto-populated without their prior consent.

Several recent ads on Facebook have apparently disregarded the appearance on mobile devices in building their advertising and inquiry systems. The programming of mobile devices accessing these pre-screeners may have an introductory line about the study with a NEXT button as the final item in the frame, leading people to submit information without their knowledge, since they neglected to scroll down to where they would find that their personal information, which is linked to their Facebook page, already populated. The next screen may include an opt-in submission request with a data privacy statement, but no allusion to the fact that their full name, email address, physical address, and phone number were already mined and sent to the advertiser’s agents.

This seems a bit counterproductive. This methodology creates a scenario where unqualified prospective volunteers are sent for site contact with only name, date of birth, address, phone and email as the only qualifications. Are we really going to waste the valuable time of coordinators by creating outbound contact with people who unknowingly sent their basic information to a clinical site? Are we prepared for the angry respondents who did not know their information had been auto populated and that the legal statements were pertaining specifically to private information they did not realize they were sending?

So, here is where I tend to be far more conservative than most in my view of ethical and legal practices. In our vast experience in patient recruitment for clinical trials, our train of thought has always been to provide a vast array of information and resources, allowing for cognitive thought and discussion before collecting any information beyond the simple statistics of website visits. It has been our experience that the more people know about the study, the more likely the chance for completing a pre-screen evaluation, completing enrollment at the site and complying with the study regimen.

Thus, finding the right audience, with the right intent, at the right time, one who is open to thinking and learning about the study is crucial to trial success. Given that, we treat client recruitment like a customer journey, narrowing our audiences and using successful digital marketing strategies to get recruitment information out to the people who will value it most, and making every click, information input, and interaction an important one.

To learn more about this contributing author, click here.

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