By Dr Andrew Clempson, Senior Research Policy Manager, AMRC; Melody Eaton, Intern, AMRC

Published: 4 March 2016

The patient voice is incredibly important for many of our members. We know it helps drive policy areas, and we also know that it is used widely in research - from setting strategies to informing peer review of research and helping with recruitment for studies. But the term ‘patient voice’ isn’t always clearly defined or well understood. In this blog we outline some initial thinking on patient voice and the work we are doing to help our members ensure the voice of patients is heard.

What is the patient voice?

The patient voice extends from all aspects of the patient’s experience of their own health and wellbeing including how a disease or long term condition impacts themselves, their relationship with family and friends, their ability to work or engage in everyday life, their mental wellbeing or their unanswered questions. Because it’s such a broad term, and because it means different things depending on the circumstances, defining patient voice is difficult.

Despite this, we think of patient voice as:

“All activities that seek the views of patients and their families in the diagnosis, management and treatment of diseases and long term conditions. This also encapsulates the views of care givers, the wider public and healthcare professionals.”

It’s further complicated because the term ‘patient voice’ is used colloquially with participation, involvement, or engagement – something that NIHR INVOLVE helpfully explain. Courtney Coleman of Asthma UK says:

“We tend to refer less to patient voice, and more to patient involvement - but I think overall it comes down to the same thing - ensuring that the views and experiences of those affected by a condition have the opportunity to meaningfully shape the research agenda, both in terms of the issues addressed and how the research is actually carried out.”

Why is the patient voice important and when should we consider it?

Patients, as well as their families and carers, can give invaluable information concerning their disease or long term condition. They experience this first hand and so have the most accurate information on what symptoms are the most difficult to deal with, how a disease or long term condition impacts their relationship with others, and their ability to go about day to day life. There are many other factors too – but these are just some of the most common aspects we think of that make up the ‘whole person’ perspective.

This unique information can tell charities a great deal about how they can be best working for the people that so generously support them. In research it can involve setting priorities– perhaps through initiatives like the James Lind Alliance– in the peer review of grant applications, helping to shape research protocols to make research more patient-focused and feasible.

Patient voice is also useful in the policy arena – by understanding what matters most to patients, we can shape our arguments and campaigns to help create a better research environment so that newer, kinder and more effective treatments can reach patients sooner.

However, in some cases, involving patient voice is not always practical and it’s important to distinguish when it’s meaningful and when it isn’t. For example, charities that fund basic research projects in a lab may not benefit from patient involvement, because those types of studies aren’t very patient facing. In such cases, it can be understand difficult for patients to shape this type of research. Understanding this and making sure that patient voice is used where it is most needed helps to avoid this becoming a tokenistic gesture.

AMRC’s ‘Patient Voice Survey’

Many AMRC members have already been collecting and using information about patient voice to shape their work. The process boils down to a clear view of what the ‘patient voice’ means to each organisation. We know that charities are already engaging with patients through surveys, seminars, conferences, direct face-to-face conversations, via social media, and a variety of other methods however there are no concrete ways to capture the patient voice and each charity may have a different way of doing it. Charities both large and small have the capability to reach out to their communities to assess their needs. It’s knowing how to do this well, and how to take this information forward that can sometimes be challenging.

Many of our charities are still grappling with these issues and need to do more to understand the ‘hows,’ ‘whys’ and ‘whens’. To help us do this, we are undertaking a survey:

We would really welcome members to fill this in and share some initial thinking from your organisation. It will help shape our work in the future, and to share the best practices that are already out there. If you have any questions, please contact Andy.