Changing the patient engagement paradigm

Patients should be considered as partners: developing solutions for patient should be conducted with patients.

Patients are playing an increasingly active role in the medicine development lifecycle. For example, companies and academics are engaging with patients to gather their perspective and even to co-create at key decision points along the medicine research and development continuum. 

This makes perfect sense. By engaging with patients, researchers can ensure that they are trying to answer the right questions; by collaborating with patients in study design, companies can make drug development more efficient, of higher quality  and more patient-friendly; and by giving patients a seat at the table, regulators, payers and policymakers can contribute to build a patient-centred health system. 

However, this approach is not yet mainstream. UCB is one of 34 industry and public players collaborating on the PARADIGM project designed to advance patient engagement focusing on three key decision-making decision points : research priority setting, design of clinical trials, early dialogue with regulators and health technology bodies. This 30-month project, running until August 2020, is funded through the Innovative Medicines Initiative (IMI) – a major European public-private partnership. UCB sits on the Steering Committee. 

Participants are drawn from patient organisations, regulatory bodies, HTA bodies, academia, non-profit organisations, EFPIA, pharmaceutical companies, along with subject matter experts. One of the unique elements of this broad consortium is its inclusion of the voice of young people living with a medical condition, people with dementia, and unaffiliated patients. It will also look beyond Europe and connect with global patient engagement initiatives through the PARADIGM International Liaison Group. 

PARADIGM will address some of the barriers and gaps to patient engagement and produce the practical tools and guidance needed to accelerate the routine engagement of patients in medicines development. 

The project’s core goals are to make patient engagement the norm, to  develop metrics and frameworks to measure return of engagement from the perspective of different stakeholders, and to find a way to ensure the sustainability of the patient engagement strategy developed for all stakeholders.

For researchers, industry, regulators and others, the patient community is a resource that has been underestimated  for too long. By engaging, we will make the system better equipped to serve the stakeholders that matter most: patients. 

For patients, meanwhile, PARADIGM is a chance to help reinvent medical research to meet their needs. This is the essence of a symbiotic relationship – a genuine win-win opportunity. 

UCB is fully committed to this approach. Together, we look forward to co-creating a roadmap for sustainable success, changing the culture of medicines R&D to focus on what matters to patients