Looking retrospectively, patient recruitment activities have evolved greatly. Unfortunately, some issues are cyclical and see resurgence from time to time. Sending in-person recruitment assistance to sites, leveraging patient advocacy outreach and the increased use of videos are just a few examples of valuable tactics that come in and out of popularity, much like recycled fashion. Is this because we don’t disseminate learning? Is it because we run out of new ideas to solve old issues? Realistically, there are many old patient recruitment problems that have yet to be properly solved. Two major issues yet to be solved are the awareness of clinical trials and how to engage with patients.
Awareness may be the most visible issue facing patient recruitment. Most people are not well-informed about clinical trials and this has been the case for some time. There are currently many places patients can go online to search, but it is confusing for patients to look for a clinical trial on their own because they rarely have the knowledge of which search areas will return the best results. Doing a quick web search on “how to find a clinical trial” will provide many resources, but none will appear fully up-to-date, nor all inclusive.
Perhaps one of the reasons for the lack of awareness has been the industry’s lack of follow-up with patients. This could prevent them from recommending clinical trials to their own network of friends and family. Now that more sponsors are making an effort to provide results to patients at the end of a trial, it is hoped that the follow-up will result in more conversations about clinical trials as an option for consideration. The better the experience a patient has, the more likely they will recommend it.
There are groups dedicated to this cause. The Coalition for Clinical Trials Awareness’ (CCTA) mission is to “advocate for the creation of a federally sponsored public awareness campaign to increase the public’s understanding of the benefits of clinical trials.” The premise of this group is that increasing awareness will speed discovery. They encourage patients to share their story as a way to advocate for increased patient participation in clinical trials.
Engagement is another large issue the industry is working on. In prior years, patients may have felt like a mere research subject, as opposed to an actual living, breathing participant. Although sponsors have recently expressed interest in engaging with patients, patient engagement has traditionally been discouraged and is further hampered by regulatory requirements and patient privacy laws. Sponsors must remain blinded, and may not have any personal identifiable patient information from trial participants.
Although it makes dialogue more difficult, sponsors and patients can share certain types of information. Conducting patient engagement surveys where patient identifiable information is anonymous can be a real benefit to sponsors. The information exchanged may shed light on barriers to participation. Because sponsors seem to have a better understanding of the benefit of engaging with patients, real efforts are being made to make a connection with the people who will ultimately benefit from the research resulting from clinical trials.
Because patients are demanding greater control over their healthcare, they have expectations that are not always met. For instance, a Harris poll conducted in 2012 found that 75% of patients want access to their medical records, yet according to a September 2013 survey conducted by Healthcare IT News, only about 20% of U.S. adults currently have access to their medical records online. By identifying gaps and seeking new methods of how to engage with patients, sponsors are taking steps to improve patient engagement in clinical trials.
Although gaps are still pervasive in patient engagement and awareness of clinical trials is lacking, real efforts are being made. There are new technologies emerging every year that allow for the dissemination of information for awareness and engagement. Interest in solving the awareness and engagement issues are high and will result in more patient-centric protocol designs and access to research data. This will, in turn, provide the public access to information and materials about clinical research to explore, read and share with other potential participants who may benefit from clinical trials.
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 email@example.com or tweet @AshleyTointon.
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