From The Editor | March 10, 2015

"Virtual" Recruitment Roundtable: How To Bolster Clinical Trial Patient Education

By Anna Rose Welch, Director, Cell & Gene Collaborative
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patient education

A lack of education is one of the biggest roadblocks to improving clinical trial recruitment. In this portion of Clinical Leader’s “virtual” roundtable, our recruitment experts chime in on the effects lack of education has had on the global clinical trial industry and present some strategies that pharma can take to ensure prospective patients realize the benefits of enrolling in a trial.

AR Welch: How can pharma improve educational outreach to inform patients about trial benefits and the importance of participation?

The movement is underway already with the help of a number of non-profit organizations dedicated to building awareness about the importance and benefits of clinical research. But there is still a long way to go. For the most part, the effort is largely fragmented.  It seems the industry – meaning the corporation stakeholders – is still having trouble understanding the “what’s in it for me” angle, because it takes a long-term viewpoint in order to find the answer. Short-term, clinical trial participation levels are still abysmally low — below 10 percent — and public perception about the pharmaceutical industry has remained fairly negative. The industry tried to solve this issue through globalization, and while it provided short term relief, many of the companies we’ve spoken to have retracted from some of the perceived riskier emerging areas to focus on more established markets in North America and Western Europe. It’s not an easy challenge. — Dan McDonald, director, business development, DAC Patient Recruitment Services

Patient protection cannot be lost in an effort to advance access to information. There are effective mechanisms in place today, such as informed consent and IRB- and EC-approved advertising, to alert patients to the existence of clinical trials and to the risks and benefits associated with potential therapies. The same principles that guide these processes should be expanded to include social media to ensure a fair and balanced presentation of facts can be made available to a potential patient in a format that is understandable by the average layperson. — Marc Hoffman, MD, CMO, Theorem

This is a tough one because pharma is already budget constrained when it comes to supporting awareness for specific trials and generally doesn’t have the appetite to allocate funds that will drive general awareness. It’s a Catch 22. The industry needs to provide a path forward for trial awareness, but admittedly cannot summon the funding required to make a substantial impact on the general public. Organizations such as the Center for Information and Study on Clinical Research Participation (CISCRP) have been working hard to help raise awareness, and sponsors support the CISCRP mission. Sponsors could also promote public awareness by holding special events in the community, such as marathons or other sporting events, in which patients and medical professionals speak to the importance of participating in clinical trials. However, there is still much work ahead to raise the level of discourse across the globe. In short, the goal of the industry is to put clinical trial participation on par with organ and blood donation. Those efforts took time but they did take hold, so there is hope. — Roger Smith, SVP, global clinical operations, Acurian

Sponsors need to communicate with patients using strategies and methods that make the message highly memorable. User experience needs to be addressed: How do patients who need to visit a dialysis center three times a week, for example, become aware, motivated, and enrolled in a study? And how does that differ from people who participate in an outpatient, acute-disease study? What is the patient lifestyle within and outside the medical pathway? How does Pharma captivate patients in these medical and non-medical pathways? Providing educational information on therapeutically-related health care topics at any touch point within these pathways can be accomplished by various media and methods that are customized to the user experience. Electronic informed consent forms (eICF) that ask the patient questions about the information presented in the ICF can help patients better understand study requirements and burdens and can result in higher compliance/adherence and subsequent retention. — Kurt Mussina, VP and general manager, Frenova Renal Research

Be sure to check out the previous segments of this roundtable series: