Age of Advocacy: The Importance of the Patient Voice in the Networked Age
The world of advocacy is changing, bringing with it both new challenges and opportunities. At the same time, the COVID-19 pandemic has drastically changed the environment we are operating in.
Patient groups are having to rapidly adapt services, with patients across the UK facing unprecedented challenges. New ways of thinking are essential to ensure industry remains a credible and valuable partner now and in the future.
Advocacy is a broad concept but can perhaps best be defined as helping to elevate or empower a community, issue or voice for a focused ‘greater good’ and while the purpose of advocacy remains constant, the process is subject to our changing environment.
For many years, industry has often been comfortable in defining success as reaching out to build dialogue and relationships with some of the biggest organisations and ‘brands’ in advocacy, perhaps with a focus on ‘task and finish’. There remains a time and place for these interactions, but they alone are no longer solely enough and can run the risk of perpetuating shallow or inconsistent understandings of a patient’s world and, in turn, how best to respond and help shape it.
There is also a risk that whilst industry understands the need to put the individual’s voice at the centre of what it does, it is only listening to and engaging with those with already the greatest footprint or loudest voice.
Advocacy is not purely organisational but also a much broader rallying around a set of individuals with the same end-goal. We know that direct individual or community involvement in the scoping, planning, development and delivery of advocacy programmes fosters a greater likelihood of impact and ultimate success. Industry broadly recognises this and is committed to the currency of ‘patient centricity’, with the ABPI publishing guidance on working effectively with patients, the establishment of National Voices’ Industry Collaborative to support learning and collaboration on the issues that matter the most to patients, and findings from an Accenture study suggesting better collaboration between industry and patient organisations can lead to improvements in patient care.
It is against this backdrop that we have developed a set of principles for effective advocacy in the 21st century. Practicing what we preach, we have built our viewpoint from the input of patients and leaders in patient advocacy who know what it takes to get it right and how to avoid common pitfalls. This guide is designed to be just that – a series of questions and values to help organisations who commit to put the patient at the heart of operations, do so in a way which is reflective of the broadest patient population, meaningful and authentic.