Launched in 2018, the 'Strengthening Patient Voices' Project is a collaboration between MRF and CoMO. Below, International Programmes Manager Jason Parker explains why this project is so important for defeating meningitis.

What is a ‘Patient Voice’?

The phrase ‘patient voice’ simply refers to the opinions, experiences and ‘voice’ of a patient organisation. Our ‘Strengthening Patient Voices’ project, in collaboration with the Confederation of Meningitis Organisations (CoMO) is designed to amplify and assist the patient voice of organisations comprised of people who have experienced or survived meningitis and / or sepsis. This includes family members of people who have lost their life to the disease. Listening to patients and their families, involving them in the development of diagnosis, treatment and after-care services will improve patient care and experience. The views of people affected by meningitis can impact health care decision making, improve meningitis survival rates and build better health care experiences.

What do patient groups do?

Patient groups often begin with a small number of volunteers who have been directly affected by meningitis. Activities vary but include campaigning and advocacy; working with health professionals to improve knowledge and understanding of the disease and its impact; raising public awareness by sharing information about the risks and consequences of the disease; offering advice and support for meningitis and sepsis survivors and families, and more.

Patient groups enable people to tell their stories in their own words. This can have a major impact on the way services are designed.

Why do patient groups matter?

In recent years, there has general trend towards to transforming the healthcare system from something that happens to patients, into something that happens with them, by treating patients as they would like to be treated.

Patients, or their family members, are able to offer a perspective that includes direct experience of meningitis. People with first-hand experience are also able to talk about the impact of diagnosis, treatment and after-care in a way that clinical staff are not. Patient groups provide a mechanism through which many people can share their experience and, through this process, health care providers and policy decision makers can accurately incorporate the patient voice into services. Patient groups can therefore play a crucial role in the health and political system. 

It’s hard to quantify the extent to which patient groups are able to influence policy decisions, however, the mobilisation of vocal patient groups such as MRF in the UK, Asociación Española contra la Meningitis (AEM) in Spain, Bekaemp Meningitis in Denmark and Nederlandse Meningitis Stichting (NMS) in the Netherlands have already contributed much to national debates and changes in health policy. For example, the introduction of the MenACWY vaccine in the UK in 2015, the Netherlands in 2018 and parts of Spain in 2019. Advocating on behalf of a group of patients can and does change policy, and is essential if we are to achieve our vision of defeating meningitis by 2030.

Members of the Strengthening Patient Voices group, pictured in Bristol, May 2019.

The Strengthening Patient Voices Project

MRF and CoMO established the three-year Strengthening Patient Voices project in 2018, working with patient groups in Spain (AEM), Denmark (Bekaemp Meningitis) and the Netherlands (NMS). The aim of the project is to assist these groups to strengthen the effectiveness and impact of their activities, and ensure that their voices are heard. The key objectives are:

• Advocate for improved access to vaccines.
• Raise awareness of more people on the signs and symptoms of meningitis and sepsis and what to do if they recognise them.
• Influence health policy to make it more responsive to the needs to people affected by meningitis and sepsis.

In May 2019, we brought representatives from AEM, Bekaemp Meningitis and NMS together for a workshop in Bristol, UK. The workshop provided each group with a platform to discuss why they were established and what they want to achieve; agree on what a good organisational strategy looks like; identify key areas of common need in terms of developing their advocacy, awareness and fundraising activities; and to plan further training and support.

Each of the participating patient groups has a wealth of experience and energy. What is often missing are the resources (human and financial) to turn great ideas for change into reality. By supporting each group to coordinate and prioritise key areas of work, we hope to work with them to maximise the resources and create lasting change for the patients they represent.

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