Supporting patients and caregivers during COVID-19

The Novartis Commitment to Patients and Caregivers continues to guide our associates and leaders to help ensure that patient insights inform our decisions. This is critical to fulfilling our commitment to address unmet needs of patients in our research and development (R&D) portfolio. The Executive Committee of Novartis (ECN) endorsed a new patient engagement strategy in 2020 that focuses on a disease area approach across the full medicine lifecycle – from early research to post-launch. This aims to increase our patient engagement activity across the company. For details on our access-to-medicine programs and commitments, see the "Pricing and access" and "Global health" sections of this report.

During the pandemic, the need for patient support grew exponentially while at the same time the revenue of patient organizations (POs) dropped dramatically primarily due to the cancellation of educational events and fundraising activities. We provided funding to strengthen digital communications tools and channels to help bridge these gaps. Our support helped ensure that patient needs were heard and that patients were able to access important information on topics such as the impact of COVID-19 on existing treatment and how to access medical help for diagnosis, screening and alternative treatment options. We did this by supporting technology that enabled remote access to healthcare professionals; strengthening call centers on routine and COVID-19-related services; and providing education on the pandemic to patients, caregivers and communities. In addition, Novartis promptly responded to unsolicited requests from physicians, healthcare institutions and governments, providing access to medicines for treating COVID-19-related conditions (see section "Managed access programs" of this report). 

In 2019, Novartis supported more than 1 481 POs in 69 countries. In 2020, we engaged with 119 organizations across 35 disease areas to inform our decision-making. Further, we supported 22 capacity- and capability-building programs. We also continued to support the European Patients’ Academy on Therapeutic Innovation, which empowers patients to contribute meaningfully to R&D processes, as well as capacity-building projects of the National Health Council, the International Alliance of Patients’ Organizations European Patients’ Forum, and EURORDIS (the voice of rare disease patients in Europe).

We continue to include patient insights in early research, with 67% of our general medicines programs obtaining patient insights before beginning human trials. Further, 44 clinical development programs comprising 69 clinical studies had a patient engagement component in the study design or conduct. Patients provided valuable input on how study designs can be optimized to facilitate access to clinical trial sites and allow remote participation. We shared our learnings on patient engagement with the broader research community, publishing 11 manuscripts and 26 posters and abstracts on patient engagement practices and insights.

We expanded the geographical reach of our flagship program, the European Patient Innovation Summit (EPIS), to the Middle East and Africa, connecting up to 700 patient advocates from 40 countries to develop a common understanding of digital health and its importance for patients, and to agree on ways for patients to impact digital health. The response from the patient community has been so positive that we are now deploying the platform in Asia-Pacific and the US. Together with EPIS participants, we launched a position paper, calling on all stakeholders to prioritize patient involvement when developing digital health solutions.

In 2020, the FDA issued new guidance on patient-focused drug development to help ensure patient experiences and perspectives are incorporated into drug development and evaluation. We aim to implement this guidance in 2021. We have also begun adapting our processes and activities to reflect the outputs of the IMI PARADIGM (Patients Active in Research and Dialogues for an Improved Generation of Medicines) initiative, for instance relating to the implementation of meaningful key performance indicators to measure the impact of patient engagement.

We believe we can help build a systematic and consistent approach to patient engagement across the healthcare system. To this end, we continue to participate in 39 IMI projects supporting the progression of healthcare and science. Additional collaborations include memberships in the EFPIA (European Federation of Pharmaceutical Industries and Associations) Patient Think Tank, the Clinical Trials Transformation Initiative, TransCelerate, the Council for International Organizations of Medical Sciences, and Patient Focused Medicines Development.