From The Editor | November 12, 2019

Janssen Uses A Dashboard To Monitor Patient Engagement Progress

Ed Miseta

By Ed Miseta, Chief Editor, Clinical Leader
Follow Me On Twitter @EdClinical

audit checklist (002)

Changing the culture within a large company can be a difficult endeavour. People don’t like change. Someone once described culture change to me as akin to trying to turn a ship. That is certainly true when trying to make your company and your clinical trials more patient centric.

Janssen is one of many pharma companies attempting to get the voice of patients more incorporated into product development and trial designs. Janssen believes true patient centricity means engaging directly with patients. If the effort is successful, it will incorporate patient perspectives into decisions and make that thinking the new norm. The company’s latest attempt to focus therapeutic areas on patient concerns involves a dashboard to track the efforts being made.

Janssen has been utilizing the dashboard for approximately three years. As the global patient engagement leader at Janssen, Katherine Capperella is responsible for patient engagement across the company. Capperella and Carrie Corboy, senior director of standards & execution excellence at Janssen, were responsible for putting the dashboard in place. Both felt that measuring progress was a key component to leading this change throughout the organization.

Carrie Corboy
The goal of the dashboard is to change behaviours, both globally and across all Janssen’s different therapeutic areas. A secondary goal was to uncover barriers that might exist and prevent change from occurring.

“We want our people to be engaging patients directly in drug development and clinical trials,” says Capperella. “We want this engagement to be happening early, as our teams are beginning to build their strategy for that disease. If there is something that is keeping them from performing that engagement, we want to know what it is.”


Ask The Right Questions

Katherine Capperella
The dashboard is an internal document designed to change the behaviour of employees. The one-page document is relatively simple, consisting of nine questions that are answered with a “yes” or “no” response.

“We want to move from doing things for patients to doing things with patients,” says Capperella. “This dashboard is one tool we use to drive that change. We knew if this effort was to have an impact, it would have to change behaviour broadly, across all the disease areas that we have at Jansen. We are reaching a broad group of people and then having an opportunity to engage them in conversations about changing behaviour to a new way of working.”

For example, the dashboard will ask questions such as whether or not patients were involved in developing the disease area strategy (to determine if Janssen is developing compounds that meet unmet needs as expressed by patients), whether patients were asked about potential formulation or delivery, and whether the target product profile reflects benefits as described by the patient. 

The form also asks whether patients were involved in the development of the clinical trial. That could include providing feedback on the protocol itself or the operational elements of the trial, such as transportation to the clinic or other assistance to improve the patient experience.

“Understanding the needs of the patient starts very early on in the development process,” says Capperella. “We have to understand the unmet needs of patients in order to prioritize our pipeline accordingly. Then, once we have a specific compound prioritized in our pipeline, our effort becomes focused on how to best develop that compound with insights received from patients. Finally, we must formulate the clinical trial. We still want to make sure the clinical trial experience is as pleasant as possible for the patients participating. We are aware of the patient recruitment and retention problem in clinical trials and believe this is a contributing step towards improving that.

Meetings Spur Dialogue and Culture Change

The patient engagement Dashboard is only the first step of the review process. The questionnaire is the measurement tool, but that is followed-up with meetings that Corboy organizes approximately every six months.

The meetings take place with a cross-functional team that is involved with developing the most important compounds in the Janssen pipeline. The members of each team include folks who sit on the compound development team such as the clinical leader, the commercial leader, and the patient-reported outcomes leader. Corboy will collect supporting material (e.g., the therapeutic product profile or the patient journey) in advance of the meeting. At the meeting the team will discuss how and where they are engaging patients and what they can be doing better. Then the team will strategize how to make those changes going forward.  

“The dashboard will tell us that something is not being done,” says Corboy. “But it doesn’t help us understand why it is not being done. That's the reason why we conduct the meetings. Everyone is able to engage in open dialogue and conversation.”

Sometimes the reason for the “no” response is they simply did not have the time or budget to facilitate patient involvement. In those cases, the teams often plan to incorporate changes into future studies. However, there are times when the team will state it didn’t really know what it was supposed to do. That’s when Corboy and Capperella can step in, discuss possible solutions, and help the team develop a plan to get it done.

“It’s challenging to promoting this type of change across a broad portfolio,” says Capperella. “Janssen has six therapeutic areas and 12 disease areas. We knew we had to make patient engagement systematic across the company, and we did not want to be reactive. This approach is a way of proactively planning for patient engagement. By measuring the results and having meetings to discuss the results, we can change patient engagement from something that is nice to have to an expectation.”

Results Show Improvement

At any given time, the dashboard is being administered to employees working on between 15 and 20 compounds. A score is determined by taking the number of “yes” responses and dividing that by the total number of questions. When the dashboard was started in 2016, the scores were low. Carboy notes on one of the questions, only two out of 19 compound teams (10.5 percent) recorded a positive response.   

The dashboard has been in place for about three years, and thus far Capperella describes the results as inspiring. Progress has been made, and she notes it has been exciting to measure the results. Each success leads to additional improvements throughout the organization. In fact, after just the short time the dashboard has been in place, that 10.5 percent figure had jumped to 86 percent.

“This process allows us to gather a lot of information about what we are and aren’t doing,” says Carboy. “But more importantly, it allows us to connect a lot of dots for folks. We have seen awareness of the issue of patient centricity change. Everyone at Janssen is seeing how we are engaging with patients and how the company and patients are benefitting. We often make connections between therapeutic areas that are doing something well and other areas that are not. People are talking to each other, seeing what they can learn from one another, and how they can better work together.”