
We share learning, events and advice from @NIHRresearch on engaging patients, service users, carers and the public in health and care research
- Tweets10.8K
- Following577
- Followers17.9K
- Likes2.6K

ALT An promotional graphic featuring a group of diverse adults smiling and talking in a casual, indoor community setting. In the foreground, a man in a yellow beanie, plaid jacket, and brown trousers leans back and smiles, holding a red mug. Next to him, a woman in a denim jacket and striped shirt holds a blue mug, and a smiling man in a teal zip-up hoodie gestures as he speaks. In the background, a woman in an orange hoodie looks down. The background features a white brick wall overlaid with a large red semi-circle design. Overlaying the image is the text, "How community partnerships are shaping mental health research" in dark blue font on beige blocks. In the bottom right corner, a logo reads "20 Years" with a red and white circle in the zero.

ALT An infographic featuring a photo of three people smiling outdoors, set against a pink background with dark blue text. In the photo, three adults stand arm-in-arm on a sunny day at a farm overlooking a distant city in a valley. The person on the left wears a bright yellow jacket and blue jeans, the middle person wears a grey zip-up hoodie and dark trousers, and the person on the right wears a dark blue puffer jacket and black trousers. Below the photo, a boxed heading reads: "NIHR MHRG: Bath". The text below reads: "This MHRG has partnered with Bath City Farm to explore how nature-based activities can support young people’s mental health and wellbeing. Through shared events and conversations, the partnership is connecting researchers, practitioners and local communities, while creating opportunities for young people to share their experiences and get involved in research."

ALT A conference room with round tables and black chairs where people sit facing a presentation screen. In the foreground, a table has a white cardboard box labeled "Anonymous Comments Box," alongside a water bottle, glasses, and a QR code. Below, a pink graphic section includes a blue bordered box reading "NIHR MHRG: Hull." Text reads: "This MHRG has partnered with Forum CIO, which connects voluntary and community organisations across Yorkshire and Humber. Together, they’re bringing people with lived experience into research planning and development, helping make community involvement a meaningful part of research, not just a one-off consultation."

ALT TRANSFORM Community co-design in action for prostate cancer screening trial TRANSFORM is identifying the best way to screen for prostate cancer - the most common cancer in the UK without a screening programme. Black men are twice as likely to develop prostate cancer and twice as likely to die from it. The trial, funded by NIHR, Prostate Cancer UK and partners, has been specifically designed to try tackle this. Historically, too few Black men have been recruited to trials to generate reliable evidence. TRANSFORM is addressing this by inviting more Black men to take part. Black communities have played an essential role in designing the trial. Trial leads have worked closely with Black community champions who have co-designed recruitment pathways, invitation messaging and clinic settings, helping to tackle historical distrust and ensure strong representation of those with the highest risk.

ALT Equity by Evidence Setting standards driven by diverse lived experience We’re funding the Equity by Evidence: Race & Ethnicity Inclusion in Research project, co-led by the NHS Race and Health Observatory and The George Institute for Global Health at Imperial College London. The project is developing a practical, sector-wide framework to ensure research the race and ethnicity of participants are properly considered across all health and care research. It is supported by a growing coalition of organisations and contributors from across the UK health, care and research landscape. Co-design and listening to the voices of people and communities with lived experience is at the core of the project, which aims to to ensure health and care research reflects the UK’s rich ethnic diversity.

ALT All in Focus Understanding the barriers to taking part in research for Black African and Caribbean communities Earlier this year NIHR BioResource launched a new initiative, All in Focus, part of their Improving Black Health Outcomes programme. Co-created with people and communities of Black African and Caribbean heritage, it aims to better understand the barriers this community faces when being asked to contribute to health and care research. The project aims to empower and support communities by bringing people who have previously been excluded from research into the picture, ensuring that health and care research is able to reflect their lived experiences.

ALT Sickle cell SCORE Co-designing community "sickle hubs" outside hospital settings Working with patients, communities and professionals, the Sickle cell outreach, resources & engagement project explored how people could be provided support outside hospital settings. It was developed in response to concerns raised by Liverpool’s sickle cell community and led by Liverpool School of Tropical Medicine. People with lived experience helped to identify what matters most – from better pain management and easier access to care, to mental health support, help for families and opportunities to connect with others. The findings highlight the potential for community sickle cell disease hubs to improve wellbeing, reduce health inequalities, strengthen trust and help people access the right support earlier.

ALT I wish more people knew... I wish more people understood that being a public contributor in health and care research is skilled, impactful work—not a token role or a “nice to have”! Public contributors bring far more than lived experience; they offer critical insight, challenge assumptions and help ensure research is relevant, inclusive and usable in the real world. Kate Public contributor

ALT I wish people knew... Public contributors make a positive difference. We are supportive and ask searching questions. Research is with and for people. Public and Patient Involvement work is team work. We are critical friends and want to improve research impact and health outcomes. We look at inclusion and make sure underserved and marginalised groups are reached. It is a great opportunity and a privilege to be involved. Peter Public contributor

ALT I wish people knew... My experience of being a public contributor has been very rewarding in so many ways. I wish people knew that applying to be a public contributor is open to anyone with experience of health and care services, and that they are not expected to have specialist or scientific knowledge to take part in NIHR activities. Mandy Public contributor

ALT I wish people knew... Public contributors give their time and often share deeply personal experiences, which can be emotionally hard and we help shape what research focuses on and what truly matters in real life. Even when unseen, our impact makes research more compassionate, relevant, and human. Oluwaseun Public contributor

ALT I wish people knew... You can make a genuine, tangible difference by working alongside clinicians and researchers to keep reminding them of how important it is that research is shaped by the people it ultimately serves. You also develop your own skills, such as communication, perseverance, and respectful challenge. Melissa Public contributor

ALT I wish people knew... Being a public contributor is often misunderstood as simply ‘sharing your story,’ but in reality, it is a form of applied expertise. Lived experience brings a different kind of knowledge—one that challenges assumptions, identifies blind spots, and strengthens the relevance and impact of research. Aurora Public contributor

ALT I wish people knew... That no matter what your life experience, every person can make a valuable contribution to research. A person with lived experience, has unique grassroots insight, essential for guiding researchers, playing an active role in positive changes to practice, as well as ensuring the right research is funded and undertaken, by the right people (including those with lived experience) and for the right reasons. Amanda Public contributor











