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A Patient Engagement Research Council (PERC) is a group of individuals with a common medical condition coming together to share their experiences and insights. This better informs the work that Janssen does to help patients.

Care partners also participate in several PERCs.

Yes. The Janssen program has grown since its launch in 2017 and now includes PERCs for more than 16 different conditions. In total, these Councils involve approximately 200 patients and caregivers from 38 states, Puerto Rico and the District of Columbia.

US citizens and legal residents may be invited by Janssen to join a PERC. Invitation is based on specific factors for each Council including diagnosis and lived experience.

Yes. You are not required or expected to take Janssen medicines to take part in a PERC. We may ask questions about the type of medicines you use, but we will never ask the brand names or makers of those medicines.

As a PERC member, we will invite you to join various activities. These will mostly be conducted online. They may include one-on-one interviews, online Zoom meetings, and surveys.

Online activities may last between 1-2 hours. We may send you materials to read or a short assignment to do before a Zoom meeting.

Occasionally we may host an in-person meeting. In-person meetings may last up to a full day. In the case of in-person meetings, Janssen will arrange and pay for all travel and expenses, per Janssen policies.

After a PERC holds its first meeting, participation in the activities that follow are optional.

Yes, you will be paid for your time per Janssen policies.

If you join a PERC, we ask that you sign a one-year contract with Janssen. Over the course of the year, you may be invited to participate in four to six activities. We ask that you participate in a minimum of two activities. After the first meeting for a new PERC, each activity is optional.

After the first year, you may be invited to extend your contract with Janssen. Most members choose to continue year after year.

Over the life of the program, the PERCs have explored many topics. The topics discussed in the future will be selected by the teams leading each PERC based on their research priorities.

Some past topics have been specific to a particular disease and some have been more general. Here are some examples:

• issues that affect early diagnosis and disease journey

• factors that drive treatment preferences

• clinical study design

• how patients interact with their healthcare providers to make treatment decisions

• the impact of COVID-19 on people living with chronic conditions

No. You will be asked to sign a confidentiality agreement. We ask you not to share what is discussed in conversation or on social media. Likewise, we will respect your privacy in compliance with HIPAA.

Each PERC is made up of about 10-20 individuals with the same medical condition or care partners to patients with that condition.