pH Associates have worked successfully in collaboration with patient organisations across a number of different disease areas, working together throughout study development, rollout and publication.A recent document, published by European Federation of Pharmaceutical Industries and Associations (EFPIA) called “Working together with patient groups”, has sparked our interest. This document has been designed to provide support to all stakeholders working in collaboration with patient groups to improve the lives of patients; a principle at the core of the work that our Patient Centred Outcome (PCO) team carrying out every day.
EFPIA begin by highlighting the need for patient organisations and the pharmaceutical industry to interact, emphasising that “Patients with knowledge or experience of a condition will be able to provide true picture of what it is like to live with a specific condition, how care is delivered, how that impacts on them, their careers and families and how medicines and other treatments can change their quality of life and meet their needs.”
They then go on to define five key principles for engagement between pharmaceutical companies and patient organisations:
(1) ensuring the purpose and the outcomes of the engagement are predefined
(2) that all financial relationships are transparent
(3) patient organisations can make independent decisions
(4) the collaboration is based on respect
(5) and does not interfere with the doctor-patient relationship
The EFPIA document outlines the potential role of a patient organisation across the life cycle of a medicine, ranging from the design of clinical trials to providing recommendations to Health Technology Assessment (HTA) agencies. Importantly for pH Associates, EFPIA define the importance of real world evidence (RWE) in delivering better health outcomes that are relevant to patients including, importantly, making studies more appropriate, comfortable and acceptable to patients.
Finally, EFPIA list some of the potential hurdles to collaboration and propose solutions to overcome these. Perhaps the most relevant for our industry clients is the relationship between industry and patient associations being perceived as commercially motivated. Key to addressing this hurdle is ensuring that all collaboration has “a clearly identified patient benefit and legitimate need”.
Working with a provider to understand the appropriate governance requirements for reporting, adherence to laws, codes of practice and guidelines is also key to ensuring appropriate conduct and transparency.
To talk to pH Associates about patient centred data projects contact Angela Rylands or Catherine Bottomley. Interested in joining pH's growing Patient Centred Outcome team? They are recruiting for a new PCO Consultant! Find out more about the role here: https://www.openhealth.co.uk/c...