Patient engagement is no longer just a buzzword in the clinical research industry. It’s a movement that demands attention and concrete steps to take action. One very practical method is to enhance communication with clinical trial participants through the delivery of lay language clinical trial result summaries. Developing these capabilities and leveraging lay summaries can be a powerful tool to add to an organization’s patient engagement toolbox.
CISCRP’s Communicating Trials Results service directly supports the development of lay language summary programs. Our dedicated team of lay language experts, medical writers, and senior editors, work directly with some of the top pharmaceutical and industry companies in the world to assist them in disseminating plain language trial results to their clinical trial participants.
To understand why these communication programs can be such an effective tool for patient engagement, we have identified both ethical and strategic reasons for adding lay language summaries to the clinical research process.
Meet Participant Expectations
Every other year, CISCRP conducts a global survey to better understand patient and the public’s perceptions about the clinical research enterprise. Most recently in 2017, we surveyed over 12,000 people and when asked specifically about receiving trial results summaries, 72% of the respondents reported that they do want a summary of their results, 91% think receiving these results is really important, and 53% reported that they have never received a summary of results. This data supports the idea that participants want to know what was learned from their clinical trial participation and find it to be an important component of the overall experience.
Lay language summaries, along with frequent communication, signal to patients that they are valued contributors to the clinical research process. There is an ethical obligation to show patients that they are partners in the quest to improve the future of public health.
Reinforce Meaningful Experience
Distributing lay language summaries and other communications through the investigative site staff offers a chance for the site to stay in touch with and engaged with the patient during and after the trial. These important touch points help to reinforce site-patient rapport and provide much-needed and appreciated closure.
Build Public Trust and Research Literacy
Providing lay language summaries is a chance to show a commitment to scientific transparency and increased public visibility. This will help to build public trust in the clinical research enterprise and promote a greater public awareness and understanding of the research process.
Improve Recruitment and Retention
Again citing data from the 2017 CISCRP Perceptions and Insights Study, it was demonstrated that when participants received a summary of their trial results, this correlated to them reporting that the study greatly exceeded their expectations and they were more likely to share the experience with friends and family. In a time when patient recruitment is challenging and low enrollment often delays the start of potentially life-saving clinical trials, it is critical for participants to have a good experience and be willing to share this with others, who in turn may look to also join clinical trials.
Returning trial results is a way to show study volunteers that they are valued and engaged partners in the clinical research process. It’s an essential and practical tool for patient engagement.
To learn more about CISCRP’s Communicating Trial Results service and how to implement your own lay language summaries program, contact Jill McNair
, Senior Director of Patient Engagement or Jay Matthews
, Business Development Executive.
By: Rachel Minnick