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Working with Patients to Design Trials – Our Patient Engagement Network (PEN)

How has a PEN Helped to Design Sjögren's Syndrome Clinical Trials that Embraces the Patient’s Perspective?

What is PEN?

At Bristol Myers Squibb we listen to and try to capture the patient voice as we design our clinical trials. One of the ways we achieve this is to establish a Patient Engagement Network or PEN, which brings together patients, caregivers, clinical site staff and patient advocacy groups together to partner with the BMS clinical study team. We partner with a patient advocacy organization to identify potential patient and caregiver PEN participants that reflect the demographics of a disease. 

In 2015 we established a Sjögren's Syndrome PEN, and here are some of the ways that the PEN has worked with the study team:

In 2015 we established a Sjögren's Syndrome PEN, and here are some of the ways that the PEN has worked with the study team:

  • Reviewing the design of the clinical protocol with the patient in mind
  • Identifying the elements of the protocol that would most likely be barriers to patients and their caregivers
  • Explaining the patient journey to diagnosis so that we can better understand what is needed to make patients and their caregivers aware of the clinical study
  • Advising us on the best communication channels to bring awareness of our studies, so that patients can make informed decisions about joining a clinical trial
  • Helping us design patient facing materials

The insights gained from having a PEN have made a big difference to our approach to our Sjögren's Syndrome studies. As a result of taking the PEN’s suggestions and perspectives on board, we have made revisions to the design of the study and to the way it is being run at our clinical sites.

The patients who are members of the PEN have been very committed to helping other patients with the disease. While PEN members who are patients are not permitted to join the study, they work with us to help ensure that the patient voice is heard so that we can design and run clinical trials that embed the patient and caregiver perspectives. We are grateful for their participation and honored to work with all our PEN members.

Programs like this help us to continuously improve how we conduct research, with the goal of bringing medicines to patients more efficiently and helping to increase patient enrollment and retention in clinical trials.

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