As we approach the end of the KIS programme, Mel Getty, one our long-standing patient and public involvement members, shares her highlights and insights.
What does patient and public involvement (PPI) to you?
For me, PPI means making sure real lived experiences shape future health research. Whether you’ve been a patient yourself or supported someone through caring for them, your story matters.
Even difficult experiences carry power – they can inform change, encourage better understanding and help make things better for others. That’s why I believe research must reflect real-world needs, listen to people in the communities and involve people meaningfully at every stage, because that’s how we build something truly ethical, inclusive and impactful.
Could you tell us a bit about some of the projects you have worked on while at KIS?
My first project at KIS, in partnership with the Aurora Project (a peer-led charity I co-founded), aimed to improve lung health in south London’s drug and alcohol services. From day one, I was struck by how ambitious and people-focused the project was. We wanted to raise awareness of chronic obstructive pulmonary disease (COPD) and its link to smoking, support early identification of respiratory symptoms and make sure people using addiction services could access proper lung care - often for the very first time.
Real change came through the KIS Service User Group, where we created visual prompts to encourage patients to visit their doctor and developed a simple screening tool now routinely used in centres like Lorraine Hewitt House. The focus was on lasting change, not quick fixes.
It was humbling to see our work recognised with a Lammy Award for ‘Best Use of Patient Experience’. More than just an achievement, it reflected a shared belief that collaboration, compassion and community leadership can drive real change and improve healthcare for those who need it most.
Another project I contributed to was a rapid review of remote consultations in mental health services following COVID-19, which triggered a sudden shift to phone and video-based care in south London. While this brought convenience for many, it also created barriers – especially for those digitally excluded or in vulnerable situations.
Alongside the Health Innovation Network (HIN), we co-designed research summaries and infographics, highlighted overlooked groups such as older adults and people in the criminal justice system and championed inclusive, person-centred care.
A key message that we took from that project was that choice matters. Remote consultations can work well, but must never replace thoughtful, equitable care. Technology should widen access, not deepen exclusion.
"This project showed the value of genuine collaboration between researchers, clinicians and people with lived experience. The PPI wasn’t about ticking a box – it was about sharing ownership of change through meaningful and creative contributions"
How have you found working with the PPI coordinators at KIS?
"I was really pleased when KIS made lived experience part of recruitment criteria for new PPI coordinators. Being on the interview panel was a rewarding experience – it gave me the chance to help find someone with the empathy and compassion this role calls for. And the KIS coordinators absolutely excel at that."
Their flexible support ranges from solutions to internet connectivity challenges and access issues, to pre-meetings and debriefs that ensure understanding and comfort. They have consistently gone above and beyond to recognise that everyone’s needs are different and that there’s no “one size fits all” approach.
What are the things that you’ve learnt from your involvement with KIS?
Lived experience leads the way: KIS places value on having coordinators with lived experience, creating a more empathetic approach to collaboration and bridging the gap between PPI members and researchers.
Accessibility is key: From subtitles to mobile dial-ins for those without internet, small adjustments go a long way in removing barriers.
Flexibility matters: KIS recognises that health, confidence and communication needs can fluctuate, and adapts accordingly.
Trust builds engagement: By offering options like email feedback, one-to-ones, group settings or gentle encouragement, KIS created space for people to grow into their voice.
Co-production at its heart: Whether developing tools, shaping agendas or joining interview panels, people are involved from the start - not added in later.
Ripple effect of respect: Researchers learn alongside PPI members, gaining confidence in inclusive practice and helping shift research culture from within. Collaboration is normal, not the exception.
Do you have tips for others looking to do PPI?
- Your voice matters. You don’t need to be an expert, your lived experience is valuable and brings insight others can’t.
- Take your time. It’s fine to listen, ask questions and learn the process - you’re not expected to know everything at once.
- Share in whatever way works for you: email, meetings or one-to-one chats. There’s no single “right way” to contribute.
- Ask for what you need. Accessibility matters - whether extra time, clearer explanations, tech help or a slower pace, good teams will adapt.
- Be kind to yourself. Life and health can be unpredictable, and it’s okay to step back, pause, and return when you’re ready.
