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Patient advocacy groups in Europe are evolving at a fast pace. They are becoming more effective and professional advocates for the patients and conditions they represent, while continuing to help their members by breaking through the barriers of isolation experienced by many people with serious and debilitating conditions.
There is a huge diversity of groups, from those with broad geographical reach, representing millions of patients, to others which are local in nature and run by a small number of committed individuals. Regardless of size and experience, the entire patient community is becoming more aware of its ability to influence and shape the healthcare system so that it meets their needs better. And they are learning to use this influence more effectively.
Across healthcare, it is arguably patients whose engagement and perceptions have been changed most dramatically by information technologies, such as the internet, forums and social media. These platforms have eroded the traditional asymmetry around access to information between industry, medical professionals and patients. They have enabled individuals, families and carers to become better informed and educated about their conditions, the clinical development and commercialisation process, and the options available. In Europe, initiatives such as EUPATI and the EURORDIS Summer School have been instrumental in developing patient experts who are able to converse on an equal footing with researchers and physicians about clinical trials, health technology assessments and Real-World Evidence studies.
In turn, the pharmaceutical industry is also changing its approach towards patient groups. Companies are starting to realise the impact that patients and patient associations can have along the entire life cycle of their products, from regulatory filing, to market access. Industry is increasingly viewing patient organisations as important contributors to their strategies - from drafting clinical trial protocols, to collaborating on disease awareness activities, and from planning the most appropriate market access strategies, to creating patient support programs.
These are all positive developments. Only through frequent and genuine interaction with patients can companies understand what really matters to them. By listening to patients, pharmaceutical companies can better understand their needs and preferences, enabling them to tailor their activities, products and interventions, to maximise impact on people’s lives. By seeking patient input on a clinical trial program, companies can reduce risk in product development, shorten their development timelines and speed up patient recruitment. By collaborating on patient education and patient support programs, companies can avoid wasting time and resources with little uptake, and ensure they are of real practical benefit.
Vifor Pharma is also stepping up its approach to patient groups. Last year the Patient, Innovation and Access Policy function was created to further improve engagement with patient groups. As part of the overarching Patient Centricity project, Patient Ambassadors were created to ensure the patient’s voice is heard and understood by the entire business. These initiatives helped to strengthen the two-way dialogue with the leading patient groups, representing the company’s core therapeutic areas – including iron deficiency, heart failure, kidney disease and rare conditions such as ANCA-associated vasculitis and Beta thalassemia.
In line with the company’s values of Entrepreneurship, Respect and Teamwork, new ways of interacting with patients are always being looked for, leading to improved care and outcomes for patients, their families and carers. Ideas that are being explored include the creation of Community Advisory Boards for patient input to shape early-stage compounds; collaborating with associations to drive the implementation of legislation to improve patient outcomes; and working with them to create improved understanding of little-known rare-and orphan- diseases.