The Expert Patient

Focusing on patients – their needs, perspectives and expectations – is crucial in the pharmaceutical industry. It might seem like an obvious statement as our work is continually geared toward improving patients’ lives, but growing levels of engagement through the likes of advocacy organizations and individual patients/caregivers means that patients now have the opportunity to influence the industry in the future.

Patients taking an active role

Due to the complexity of many diseases - such as in the case of cancer - patients have varying treatment objectives and, therefore, require more personalized treatment plans. Healthcare systems would do well to account for taking stock of patient viewpoints by making patient experience a central aspect of their value assessments. Enhanced interaction between clinicians and patients could result in greater optimization of treatment. This involves moving beyond exclusive reliance on traditional clinical measures such as length of survival, measures of disease markers, and physiologic markers, and including patient reported outcomes (PROs).

Supporting patient engagement

With the evolution of technology, trends show that patients are taking an increasingly active role in their care and feel empowered to make their own treatment decisions. To successfully engage and actively participate in general healthcare decisions, as well as influence research and development, patients need to be able to understand health-related information in order to come to informed conclusions about such data. To facilitate this, Bayer partners with patients consistently including improving patients’ health literacy regarding available treatments and their appropriate use, as well as the individual assessment of the benefits and risks of drugs and the processes behind the development of medicines. This level of support empowers patients to make informed decisions together with their healthcare professional.

The Innovative Medicines Initiative (IMI) is a partnership between the European Union and the European pharmaceutical industry which fosters open collaboration to develop tools and processes which accelerate patient access to innovative medicines. In order to empower patients to participate in interacting with the pharmaceutical industry, Bayer joined forces with the patient organization, EUPATI, to develop training materials for patients on research and development.

Fostering patient involvement in R&D

Within IMI, Bayer is co-leading one of the newest projects, PARADIGM: Patients Active in Research and Dialogues for an Improved Generation of Medicines. The goal of the project is to foster joint development of a framework for patient engagement in research and development. It attempts to bring together all of the stakeholders in the development of novel medicines: patient organizations, the pharma industry, regulators, and universities. PARADIGM wants to ensure that patients get a clear voice and an active role in every step of the development process.

Patients know best

Matthias Gottwald, Head of R&D Policy and Networking at Bayer, sees patient engagement as a moral obligation alongside a clear expectation from patients: “It is patients who know best what they suffer from and what they expect from a medicine. In the past, our industry often underestimated their tremendous value.” An example of this is the design of clinical trials which are often conceived by various stakeholders but not patients themselves. Feedback from patients in this area is essential to ensure that clinical trials are steered in the right direction from the start.

The European patient alliance for rare diseases EURORDIS recognized the PARADIGM project and awarded Bayer, together with collaborators EFPIA, MSD and UCB, the Black Pearl Company Award for Patient Engagement. Pooja Merchant, Head of External Medical Affairs & Patient Insights and Engagement (PIE) added: “It’s really special to be recognized for our commitment to patient empowerment and engagement. In the future, patients will increasingly take charge of their care, demand equal say in how they are treated, and become experts on their own health. We need to think in a much more user-centric way than before so that our science is able to address people’s real needs. By encouraging patients to be part of our drug development processes, we ensure that the treatments we provide continue to make a difference.”