Patients have always been at the center of what we do. However, the role of the patient is changing rapidly; patients are increasingly involved, educated and engaged in healthcare. At Janssen, we are adapting to this change by engaging directly with patients and caregivers to develop solutions that better meet needs and improve patient outcomes, and are available to patients sooner.
We define patient engagement as partnering with patients and caregivers and systematically interacting directly with them throughout the product lifecycle to accelerate research and develop patient-inspired innovation and solutions beyond the product. Our strategy includes four pillars:
- Differentiated higher-value treatments that lead to better outcomes by acting on the patient’s perspective early and across the lifecycle;
- Inclusion of the patient’s voice in clinical trial protocols to improve patient experience and accelerate research;
- Collaboration with patients to develop tailored solutions to empower patients in managing their disease; and
- Shaping regulatory policies and the field of patient engagement to enhance the patient’s voice globally.
Our goal is embedding patient engagement into our business. This means making sure we have direct and ongoing dialogue with patients, and that we better understand patient needs, and think of and act on patients’ perspectives all the time.
Progressing a range of patient engagement initiatives
Patient insights have changed clinical trials: To date, approximately 2,000 patients and caregivers from more than 30 countries have been a part of the Janssen Patient Voice in Clinical Trial program, which enables patient insight into clinical trial design, and is now a formal step in developing clinical studies. Changes made include:
- Reordering the sequence of needed tests and providing rest periods in between;
- Modifying wording in Informed Consent Forms and revising inclusion/exclusion criteria;
- Reducing certain procedures and/or better explaining the rationale for certain procedures; and
- Providing additional support, such as transportation to clinical sites.
Device design insights: The U.S. Food and Drug Administration approval of SPRAVATO (esketamine) in 2019 is not only a breakthrough for patients with treatment-resistant depression (TRD), it’s also a revolution in Janssen work with patients. See R&D: Pharmaceutical section.
During the SPRAVATO clinical trials with 1,700 patients, our teams collected insights directly with patients to inform the design of its unique nasal spray dispenser. Specifically, as a result of patient suggestions, we added a depth guide and a dose indicator, and adjusted the dispenser design. As a result, the approved medicine was more closely in line with patient needs, supporting effective use and expected better results for patients.
Patient advocacy: In 2019, our patient engagement teams across the world addressed several forums, including the Patient Engagement Open Forum in Brussels, where Janssen also held "best practice" patient-centricity workshops, and Eyeforpharma’s Patient Summit Europe, as well as collaboration with Patient Focused Medicines Development and the European Patients' Academy.
Using patient input to improve safety: The Johnson & Johnson Consumer Experience Center (CxC) is an internal market research partner that can elicit feedback from consumers, patients and healthcare professionals during the product development process. We used CxC to obtain patient perspectives on involvement in safety matters. Activities included three focus groups in late 2018 to identify patient and caregiver perspectives and obtain real-life examples from patients. In 2019, the findings were integrated into patient engagement safety plans, including, for example, patient reporting of side-effects.
Using technology to enhance patient engagement
Enhancing the informed consent process: We also use eConsent, which deploys modern technology and multimedia to create an interactive informed consent experience for potential trial participants. As a key contributor to the TransCelerate BioPharma eConsent initiative, Janssen pioneered the implementation of eConsent in trials in several countries and languages, some of which were ongoing in 2019, and has helped advance cross-industry adoption.
Promoting online health advocates: In 2019, Janssen U.S. hosted its fifth annual HEALTHEVOICES leadership conference that unites and empowers online patient advocates. In 2019, in Texas, we brought together 140 advocates representing more than 35 health communities for skill-building, networking and empowerment. HEALTHEVOICES continues to be the only event dedicated exclusively to strengthening online health advocates. Attendees engaged in sessions from how-to workshops on content creation and podcasting to discussions on mental health and parenting with a chronic illness. Many advocates shared their experiences on social media—early on the first day, #HealtheVoicesLIVE was already trending nationally and #HealtheVoices19 was trending globally.