EU/US: First collaborative definition of patient centricity published

The definition, developed in research sponsored by AstraZeneca, is intended to promote understanding of patient needs and values. Ten patient-centric principles will provide the pharmaceutical industry with a consistent reference point to sustain meaningful and mutually beneficial engagement with patients. Wider testing of these outputs among US and European patient communities has confirmed their validity.

The research, published in the journal BMJ Innovation, defines patient centricity as putting the patient first in an open and sustained engagement, to respectfully and compassionately achieve the best experience and outcome for that person and their family.

The definition encompasses five points of importance to patients identified and validated through the research of: (1) inclusiveness; (2) sharing goals that are patient- and family-centred; (3) empowering patients to take control of their own health; (4) working in a way that shows respect, compassion and openness; and (5) working in partnership.

Patricia Furlong, president and CEO of Parent Project Muscular Dystrophy and a co-author of the research, said, “This definition and set of guiding principles creates a clear signpost for industry by establishing a goal for how to meaningfully put patients at the centre of work, involving them in decision-making in a way that truly benefits them.”

Guy Yeoman, vice president of Patient Centricity at AstraZeneca, said the research sets the direction for how patient engagement should be conducted in the way industry develops drugs. “[Patients] wanted us to stop concentrating solely on what we deliver, and think about how we deliver it,” he said.

The research included interviews with patients and patient organisations, interaction with patients through an online forum and patient advisory boards. Healthcare providers and payers also provided input. Following the data collection, researchers conducted two patient workshops to develop a definition of patient centricity and identify principles for pharmaceutical companies that are most important to patients.

The principles were then validated by 470 and 703 patients in the PatientsLikeMe and Carenity online networks, respectively.

From the report: Patient engagement is an essential aspect in the research/development of drugs and of disease management. Improving the lives of patients requires a deep understanding of their medical conditions, experiences, needs and priorities. However, a consistent definition of patient centricity is lacking.

Patient centricity should be defined as ‘Putting the patient first in an open and sustained engagement of the patient to respectfully and compassionately achieve the best experience and outcome for that person and their family.’

The development of a consistent definition of patient centricity and its associated principles provides an opportunity for biopharmaceutical companies to adopt and use these as a reference point for consistent patient engagement throughout the product life cycle.

Reference: Yeoman G, Furlong P, Seres M, et al. Defining patient centricity with patients for patients and caregivers: a collaborative endeavour. BMJ Innovations: doi: 10.1136/bmjinnov-2016-000157