Research is essential if we’re going to prevent group B Strep infections in babies and improve care for families.
At Group B Strep Support (GBSS), we work closely with researchers, clinicians and families to make sure studies are shaped by real experiences and focused on what matters most.
We can support research at every stage, from early ideas through to sharing results.
Why involve GBSS?
Involving people with lived experience makes research better. It helps ensure that:
- the questions being asked are important to new and expectant parents and their families
- studies are designed in a way that works in real life
- information for participants is clear and sensitive
- findings are shared in ways people can understand and use
Public involvement means research is carried out with people rather than to them and the earlier this involvement happens, the more difference it can make.
Through GBSS, you can connect with a large, diverse community of families affected by group B Strep and professionals with expertise in this area.
How we can support your research
We’re a small charity, so what we offer will depend on our capacity and whether funding is available – but we can often help in the following ways.
Shaping your study
- helping you refine research questions
- advising on what matters most to new and expectant parents and their families
- spotting practical or ethical issues early
Designing your research
- reviewing participant information and consent materials
- helping make language clear, accessible and sensitive
- advising on recruitment approaches
Patient and public involvement (PPIE)
- linking you with new and expectant parents and families to be involved
- supporting involvement groups or focus groups
- identifying contributors for advisory or steering groups
Charities like GBSS show how valuable this can be, with families involved in everything from study design to steering groups and co‑applicants.
Supporting delivery
- helping make the study easier and better for people taking part
- sharing opportunities to take part in research
- helping identify and reduce barriers to participation
Sharing findings
- helping develop clear, accessible lay summaries
- sharing findings through our website, social media and networks
- ensuring results reach families and frontline professionals
Our approach
We aim to:
- keep the voices of new and expectant parents and families at the centre of research
- use plain, respectful and inclusive language
- make involvement accessible and meaningful
- work collaboratively and constructively with researchers
Good public involvement means working together in a way that values all contributions and builds respectful relationships.
Working with families
We take care in how we involve new and expectant parents and their families, especially those who may have experienced trauma or loss. This includes:
- being clear about what’s involved and how their input will be used
- offering different ways to get involved (from quick feedback to longer-term roles)
- respecting people’s time, experience and boundaries
- signposting to support where needed
How to request support
If you’d like us to be involved in your research, getting in touch early makes a real difference. A simple way to do this is:
- Contact us: Email us with a short outline of your project.
- Share the key details: Let us know:
- what your study is about
- your timelines
- what kind of support you’re looking for
- whether funding is in place for involvement
- Initial discussion: We’ll usually arrange a short call or email exchange to understand what you need and what we can realistically offer.
- Agree the approach: If we’re able to support you project, we’ll agree:
- what GBSS will do
- how families will be involved
- timescales and key points of contact
- funding arrangements
- Ongoing working: We’ll stay in touch as your project develops, helping ensure involvement is meaningful and works for everyone.
Funding and capacity
GBSS is a small charity, and meaningful involvement takes time, care and resource.
For most projects, we expect appropriate funding to be included for:
- GBSS staff time
- coordinating and supporting family involvement
- payments and expenses for people with lived experience
- reviewing materials and contributing to study design and delivery
We are unlikely to be able to offer more than very limited, one‑off support without funding in place.
Including costs for patient and public involvement is now expected by most funders and is essential for doing this well.
If funding is not yet in place, we’re happy to discuss what might be possible and how to build this into your application.
Getting in touch
If you’d like to involve GBSS in your research, please email us at admin@gbss.org.uk
We’ll always be open with you about what we can offer and will work with you to find the best approach.
