Increasing participation in clinical trials has long been a topic of discussion in the industry, and obstacles related to regulatory concerns, culture and communication are known to hinder outreach to the patient community. Fortunately, the focus on meaningful engagement has led to new ideas and opportunities to create dialogue between patients and professionals.
The use of technology has risen to the forefront as a direct method of interacting with patients. Implementing a patient portal that allows participants to log in and view a visit schedule, request appointment changes or access resources related to a study can support subject compliance by reminding patients of upcoming visits and providing a window of time to make changes. Automating this process, whether through a patient portal or a subscription service, will usually decrease some administrative burden for site staff, allowing more time to focus on providing care.
The process of engagement is not limited to interaction with study specific participants. Research sites can utilize their website as a tool to provide content aimed at the patient community. Providing valuable resources can help establish credibility and build trust with the patient. Implementing a call to action on the website can encourage patients to opt-in to receive additional communication. This provides an opportunity for sites to deliver custom content directly to their inbox related to clinical research education and potential study opportunities. Sites can also utilize their email database to occasionally survey potential patients about issues or to gain understanding of the community perception of clinical research.
Social media offers a platform that allows for efficient, two-way engagement between sites and patients, and also serves as a means to share relevant content. According to the 2015 CISCRP Perceptions and Insights Study, 22% of respondents indicated social media and online resources as sources for information about clinical research. As more sites build their online presence, it is likely this number will increase. Most social platforms offer considerable opportunities to grow an audience through paid or organic content. Facebook is known for advanced targeting, and can be particularly useful when looking to reach patients with specific interests or located in certain geographic areas.
Engaging with advocacy groups and online forums related to a range of therapeutic indications offers an opportunity for sites to connect with patients and gain valuable insights. Feedback provided by patients can help sites determine areas for improvement and ultimately enrich the patient experience for future studies. Online forums are an effective, low-cost option that can be utilized by multiple site members.
Patient engagement is not limited to technology, however, and the majority of patients prefer to receive information about clinical research from study staff or their primary care provider (See figure). Sites can explore within their town or city for opportunities to engage the local community. Many events will allow sites to set up a table or booth and interact with attendees. Sites can visit public events to share resources and educate the community, and may be able to encourage attendees to opt-in for further email communication for continued engagement. In addition to attending public events, a site could elect to organize a QA session or host a public forum where people may come to learn more about clinical research.
Establishing a patient advisory panel that meets on a regular schedule will foster a collaborative environment among researchers, patients and caregivers. While online surveys are an effective tool to gauge the response of a large audience, smaller patient groups or councils can lead to more in-depth discussions about patient perception. This enables the site to focus on areas most relevant to their own patient community, and can also serve as a resource for evaluating what content to share with the community at large.
The research community is aware that in order to advance new medicines, methods to bridge the gap between patients and the industry must be explored. With the most direct access to patients, research sites have the ability to come up with creative ideas and experiment with different approaches to establish meaningful dialogue with the patient community. It is no secret that putting the patient at the center will ultimately lead to more successful study results, and increased participation overall.
Dr. Christophe Berthoux has been the chief executive officer at Synexus since September 2010. Synexus is the world’s leading site management organization (SMO), dedicated to the recruitment and management of clinical trials across the globe for over 24 years. Synexus is proud to be the patient’s choice for clinical research. Email comments and questions to email@example.com.
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