Strengthening patient voices

May 2018 – April 2021

Meningitis survivors and their families are usually the most passionate advocates for action on the disease.

Over the last few years, Meningitis Research Foundation (MRF) and the Confederation of Meningitis Organisations (CoMO) have supported patient groups to develop their advocacy and awareness raising activities, to ensure patient voices are at the heart of efforts to defeat meningitis.

From 2018-21 MRF directly supported three patient groups in Spain, Denmark, and the Netherlands. Activities included face-to-face workshops, individual mentoring, and a peer support programme. The Strengthening Patient Voices programme helped groups to identify the key issues they wanted to work on, and to create or strengthen their strategies for advocacy, awareness raising, and fundraising.

The Strengthening Patient Voices programme has now moved into a new phase which aims to support a wider number of patient groups, through on-line resources and training (below). MRF and CoMO are working to share these resources with patient groups across the world, particularly in regions such as Africa, where the burden of meningitis is highest.

Advocacy case-studies

Advocacy pdf exampleNine case-studies have been developed in collaboration with patient groups from different countries, to support other health organisations and activists in working for change.

The case-studies share stories of meningitis-related campaigning in different contexts – including Peru, Spain, the US, and the UK – sharing tips and approaches and celebrating success. Issues covered include campaigning for the MenB vaccine in France, raising awareness in Turkey, and advocating for support and aftercare in Nigeria.

The case-studies will be useful to any organisation working on meningitis or related health issues, particularly around the World Health Organisation’s Global Road Map to Defeat Meningitis by 2030.

Using stories for effective health advocacy

Personal stories can be a powerful tool in effective health advocacy. Stories can help people better understand an experience which may be very different to their own and can help shift attitudes and opinions in a way that facts and statistics rarely can.

The Using Stories for Effective Advocacy resource helps users understand when and how to use stories in their advocacy work, and how to develop a simple story (whether video, podcast, or case-study). It also covers: how to find people willing to share their stories; best practice around capturing, storing, and using stories; and how to protect those who tell their stories. Sections on monitoring and evaluation help users track the impact of their stories and ‘Resources’ section points to further information on safeguarding, advocacy planning, and health communications.

Developed in collaboration with patient groups from the CoMO network, Using stories will help health organisations share their experience of meningitis and put patient voices at the heart of their campaigning.

Planning for change: e-learning module

Identifying the ‘change’ you want to achieve, and the steps that that will help you get there, can help all patient groups increase their impact.

A new e-learning module, Planning for Change, helps learners to identify the issues they want to address, the change they want to see, and the resources, activities, and progress milestones, that will help them achieve it.

Often called a ‘Theory of Change’, the approach is a useful tool to help groups plan their work, evaluate their impact, and report on achievements to funders and donors. The module includes examples of planning for change from patient groups around the world and allows learners to develop their own basic plan during the session.

We take action that benefits people directly. including, training health professionals and providing support and information services.
Since the charity was founded in 1989, we have awarded 161 research grants. The total value of our investment in vital scientific research is over £19.1 million (€24.7 million).
We call for positive change as a united voice against meningitis and septicaemia, and a dedicated champion for those it affects.
The 'Strengthening Patient Voices' project was launched in 2018 between MRF and CoMO.
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Vinnie Smith
CEO

Hello,
I'm Vinnie, if you'd like to know more about this project, get in touch

Tel: 0333 405 6231