LAUSR

Nurses played such an important and crucial part of my cancer experience that even now, more than 25 years later, those positive recollections are seared into my memory the being there, the nods of reassurance, the comforting looks, the gentle holding of a hand, the patience of listening, the repeated explaining of things in words I could understand and sometimes when I forgot. Your knowledge, skills and understanding as nurses evoked such total professionalism. It felt as if I was the only person ever with throat cancer. Thank you! As I recovered, it was a nurse who personally invited me to become a member of a Patient Advisory Group for the Local Health Authority in Nottingham. This led me to become more of a patient advocate for the public voice to be heard often referred to as Patient and Public Involvement or PPI. My specific interest is health research and data. I have spoken at many conferences and attended meetings and sat on different committees and groups trying to ensure that we remember it is about the patient, their families and friends. I encourage researchers to meet and talk with those who are the potential beneficiaries of the research. These conversations have the potential to ensure that the right questions are being asked, that the outcome measures are meaningful for patients and that the most appropriate inclusion criteria are being applied. Currently, I co-chair the Make it Public Campaign Group for the Health Research Authority (HRA) with Professor Matt Westmore, the Chief Executive. The #Make It Public campaign is about making health research more transparent. For years, people taking part in research express pride about being able to contribute to making a difference, to improving the journey for others in the future. Alongside this pleasure of volunteering and supporting the NHS is the frustration that they heard nothing about the results. Even when we do manage to find the results, it is rare that we can understand what it means. This is annoying for patients but equally unhelpful for many nurses and other health professionals. The HRAvision for research transparency is that trusted information from health and social care research studies is publicly available for the benefit of all. The Transparency Agenda (https://www. hra.nhs.uk/planning-and-improving-research/policies-standards-legislation/research-transparency/ make-it-public-transparency-and-openness-health-and-social-care-research/) sets out to ensure that studies are recorded, participants are informed of the results and that a summary is available in plain language.