Making Sense of Involvement

The following notes formed the basis of a workshop for the Homerton Simulation Conference 2017 #HomSim

At first glance it might appear to be difficult to actively involve patients in Technology, Medical Devices, Translational Science, Surgical Procedures yet the added value of patient insight from personal experience can be helpful, innovative and transformational.

For many years, I have offered my perspective on individual research studies, on the conduct and management of trials, on the governance and policies for research in the UK and beyond. I have contributed to helping more people take part, to improving access, time and targets by which research studies are rolled out in the NHS.

I have also gained knowledge and a much broader understanding of my illness, the challenges of undertaking research and the importance of research as part of the patient pathway. I now see my active involvement as a direct influence on my own health and wellbeing. 

I simply ask that you see patient experience, the patient voice and our presence as a valuable resource and a willing partnership to enrich research and improve people’s health outcomes. It is about thinking where we might add value.

So here are my Top Ten tips for the workshop

1. Start from where you are with your own work - to make Patient & Public Involvement make sense.
2. Align the Involvement of patients to your project: Choose a point e.g. in the early thinking, design, proposal application or for recruitment, etc.
3. Think about the patients: Why and how might their experience, voices and presence make a difference?
4. Make the involvement appropriate and proportional - to the need, task, time and funding
5. Decide on the format: Do you want a sounding board, a buddy, partners, a discussion group, co-applicants? 
6. What is needed for the task: Think of each other’s needs and always pay out of pocket expenses
7. Find the relevant people: Are they current patients, past patients, carers, patient representatives, public?
8. Review regularly together with patients: Use a Plan, Do, Study, Act approach.
9. Keep in contact: provide regular updates and feedback even when little has happened.
10. Write it up: Mention the IMPACT of the involvement on posters, presentations and publications. Thank everyone!

In the workshop, I invited people to work in small groups to consider different points in a research idea through its development.