Anindita Ghosh, project manager at Shift.ms talks about MS Reporters - a programme that encourages and supports direct engagement between multiple sclerosis (MS) researchers and people with MS (MSers).
Digital communities
Empowering people in this digital age has become easier. For so many of us, the internet is nearly always the first port of call for information.
It has become a powerful tool for people to develop communities, learn from and support one another and advocate for their needs. This is exactly how Shift.ms started.
We have a knowledgeable community of 10,000 people with multiple sclerosis (MSers) who have the best understanding of how their disease affects them and share experiences.
As MSers adjust to having a long-term health condition, there is a natural curiosity to find out what their future might look like and understanding new areas of research and processes can help MSers to make decisions about their future.
This is where the academic community can play a part.
Connecting with researchers
Increasingly, there is an expectation from grant funders that research must engage with the public. Engagement means more than ticking a box in an funding application or publishing papers. It’s a chance for researchers to create a conversation about their work online, enabling them to reach and inform audiences who are impacted by research. Building relationships with people that benefit from research can connect and promote it within their communities.
We’ve been working on bringing together these two groups, our community and leading academic researchers and clinicians, through our Wellcome Trust-funded MS Reporters project.
We train MSers to become citizen reporters and match them to leading academic, clinical and industry experts. We collect questions from the MS community which are then used in an interview with a relevant MS Expert.
Our reporters conduct interviews as representatives of their community, holding experts to account, filming their meetings to build a free video library of expert knowledge that is accessible to the wider community.
Each expert gives 45 minutes of their time, twice a year to answer questions from the MS community. The format is simple and requires little time from the expert and they can engage one-to-many.
It provides valuable time with a patient and allows them to engage in an accessible and open way - moving away from a traditional top-down approach of providing information to interacting with MSers is just the start.
https://www.youtube.com/watch?v=S7TpHG26hlg
Mutual benefit
Giving MSers an opportunity to meet and talk with experts improves their knowledge and confidence and gives them an understanding about subjects from financing trials to the next breakthrough drug.
Sharing this video library with the wider MS community means research finds the intended audience - the people that will benefit from research.
The aim of involving MSers in the research process can go beyond this initial conversation. We want MSers and researchers to develop ongoing relationships and provide MSers a mechanism for their input into the research process influencing outputs and outcomes.
So far, we have trained 35 citizen reporters and teamed them with leading MS experts from specialist MS centres in London, Edinburgh, Leeds, Salford, Liverpool and Dublin.
The MS Reporter model has already been successfully adopted by two other charities – Shine Cancer Support and Join Dementia Research – demonstrating its potential to help hundreds of thousands of patients with long term medical conditions in the future. With support from the Wellcome Trust and Comic Relief MS Reporters will be scaled up over the coming months and the model shared with other charities and organisations within the medical world and beyond.
Find out more about MS Reporters via the project webpage.
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