We have redefined our existing relationship with patients by creating a Patient Engagement model where we engage with patients early, systematically, and directly on the most important aspects of drug development and treatment.
We are incorporating patient perspectives early and often in the following ways:
- Incorporating patient perspectives into clinical trial procedures.
Only 3 to 5 percent of patients who are eligible to participate in clinical trials actually enroll, which is why we want to design trials that are less burdensome for patients and rooted in the reality of their day-to-day lives. Our efforts led one Janssen R&D team to cut the length of patient visits in half, provide transportation to and from the trial site, and make informed consent available on a computer monitor and paper instead of a tablet to reduce glare for visually-impaired patients. After seven months, no trial drop-outs were reported. Fifteen similar projects are underway, which may lead to better data collection and accelerate our ability to bring therapies to the patients who need them.
We are also exploring additional initiatives to improve patient-centered clinical trials by developing new strategies and solutions to improve the clinical trial experience for patients.
- Including patient-reported outcomes in medicine labels.
When our researchers were developing a plaque psoriasis medicine, they worked with patients and other stakeholders to create the Psoriasis Symptoms and Signs Diary (PSSD), a tool that measures symptoms that matter to patients and lets them record their own symptoms. In clinical studies of moderate to severe plaque psoriasis, clinician-reported outcomes are typically used to assess the extent and severity of the disease as well as the patients’ response to therapy. But plaque psoriasis often comes with symptoms that are best assessed by patients themselves, such as itching, pain, stinging, burning, and skin tightness. The PSSD tool, several years in the making, was a significant development in our quest to develop and convey patient-focused product information. The information we gathered from patients who used PSSD in clinical trials is now part of the FDA-approved U.S. Prescribing Information for the medicine.28
- Modifying product design for administering a medicine currently in development based on patient input.
One Janssen team worked with patients and health care professionals through studies to optimize the design of a device for administering a particular type of medicine. The modified design helps patients insert the device properly, shows whether the full dose has been administered, and comes with improved instructions, including questions and answers based on patient insights.
The role of patients in Janssen’s Patient Engagement operating model: We go directly to patients for insights and input into our work. Watch this video to learn more how we do this.
Katherine Capperella, Global Patient Engagement Leader at Janssen, shares how we’re using patient feedback to improve our medicines.
We are also inspired every day by patients and their stories.
Janssen proudly features artwork created by people affected by the illnesses and diseases that we are dedicated to helping prevent and treat. Please visit our art gallery at the bottom of our home page to learn more about the artists and view more artwork.
Through our SHARE Network, we would be honored to hear your story.