How Patient Voice Created A More Immersive Trial Experience At Janssen

By Ed Miseta, Chief Editor, Clinical Leader

Janssen has been attempting to develop a streamlined clinical trial experience for patients. Kafayat Babajide, associate director of patient portals for Janssen, spoke at the 2021 SCOPE conference and described the company’s goal as having a one-stop shop for patients. The one-stop shop now has a name, which is My Trial Community^TM. The community was the result of listening to patients and understanding that they desired a more connected experience.

“When making decisions we try to listen to our key stakeholders, and one of those stakeholders is the patient,” says Babajide. “To create a more connected patient experience there were six key areas we felt we had to focus on. We felt we needed to treat our patients as partners from the very start of the clinical planning process. We knew that many patients do not have a good understanding of trials, so we wanted to increase their awareness and education. The next step would be to demonstrate commitment to those patients and build their trust. Trials are an emotional process which can cause anxiety in patients. Trust can help alleviate the anxiety and fear in patients. And the final three areas were enabling crisp, clear communication that is provided when it is needed, enabling patient access to data (such as lab data) to empower them, and establishing connections with existing enterprise capabilities. We knew that making improvements in these six key areas were vital to creating a better patient experience.”

What Do Patients Care About?

The next step was crafting a vision that considered those six areas of concern. To do so Janssen put together a cross-functional team that worked collaboratively to ensure the company devised a smart solution coupled with a smart process for bringing it to life. The team would also ensure everything was being done in a compliant manner. The team included representatives from areas of the company concerned with legal issues, privacy, IT & compliance, clinical insights, local and global clinical operations teams, and therapeutic areas and study teams.

Babajide stresses one of the goals was always keeping patients at the center of every effort. The cross-functional teams attempted to always cater to the perspectives and needs of prospective patients and those already participating in clinical trials.

The efforts of those teams led to the creation of My Trial Community^TM. Babajide describes it as a program to create better trials via innovative solutions that are created by an engaged community of individuals. That community includes the drug sponsor, the study physicians, and clinical trial participants from across the globe. At the heart of the initiative is a digital platform specifically designed to support site teams and patients through the entire clinical trial journey.

One comment we consistently heard from patients is that they wanted to better understand the clinical trial process,” states Babajide. “They wanted to know what they should expect and how the different aspects of the trial would fit into their daily lives. To meet those needs, we now provide patients, their families, and caregivers with access to educational features prior to having them join a trial. The features cover various medical conditions, what a clinical trial is, and what they should consider before enrolling in a trial. They also learn what to expect throughout the trial process and are given access to Janssen Global Trial Finder, which helps patients identify potential trials.

Patient feedback is critical to continuous improvement in trials. At the end of the trial, My Trial Community^TM will enable participants to provide feedback on their experience while also receiving overall trial results.

Once the product is developed and put into use, Babajide notes that will just be the beginning. Janssen will continue to work with sites and participants to gather insights and further improve the clinical trial process and experience.

The Power Of Patient Voice

What seems to be at the core of the entire My Trial Community^TM experience is the patient voice. There are many ways in which Janssen was able to gather those perspectives from current and potential patients. For years Janssen has used patient and investigator advisory panels to hear the thoughts and concerns of both groups. Market research and crowd sourcing has supplied additional viewpoints, as has the Future of Clinical Trials Forum and the company’s Internal Patient Engagement Leadership Team. Additional insights are gathered from site nurses and staff as well as external patient groups.

“In gathering patient and site insights, there were several themes that we saw arise over and over again,” notes Babajide. “One was to lead with increased awareness and understanding of clinical research. Patients and sites need to understand what they are getting into, what is involved, what are the key parts of the trial, and what will their involvement entail. This is critical information that all patients need to know before committing to the trial. In the past, too many of them simply did not have access to that information. We knew that was the main point we had to lead with.”

Transparency was the next major concern. Patients wanted transparency around data and data sharing, as well as expectations. Patients needed to know what was expected of them before agreeing to participate in a study. Those needs had to be fully understood for their participation to be valuable to both themselves and the sponsor company.

A third patient request heard loud and clear was the need for solid training. For the platform to be launched successfully, Janssen had to ensure anyone touching it or playing a part in the study knew what was expected of them every step of the way. 

“For any of this to be successful, there had to be clear communication,” says Babajide. “Patients had to know exactly what value this product would deliver to them. One saying we strongly believe in when it comes to patients and sites is the importance of Ask, Listen, and Act. We asked patients about their needs. We listened to what they said. The final step was to act on it. We made sure their insights were folded into the My Trial Community^TM product. Throughout the development and design journey we made sure those valuable insights were addressed.

A Proper Rollout

The only thing left to do is ensure a proper rollout of the product. Right now, development is being wrapped up and Janssen is moving into the product deployment phase. A pilot product will first be made available to trial participants in a limited number of regions. The selection process is based on a well-defined rubric. Learnings will be gathered to determine if additional improvements are necessary. The company also hopes to gain proof-of-concept around the value the product provides to stakeholders. All learnings will allow Janssen to grow, enhance, and expand the product for future use.  

“There are a number of ways for us to measure success,” adds Babajide. “First, we must ensure we are meeting the key needs of the sites and participants. That goes back to their needs of awareness, education, transparency, and expectations. Second is hitting key business objectives such as better recruitment and retention in trials. The company will need to make sure My Trial Community^TM is scalable and easy to replicate for all studies. And finally, we need to ensure that these efforts are cost and process efficient. This is the beginning, and we want to touch as many lives as possible. Our feedback loop will allow us to continue to deliver on the most critical needs of our patients.”