Patient Engagement*at ARVO 2019

We caught up with Moorfields BRC Patient and Public Involvement and Engagement (PPIE) lead Dr Andi Skilton on his return from Canada, where he was discussing his work as part of a special interest group on patient engagement* at ARVO 2019.

Congratulations on being asked to speak at ARVO (Association for Research in Vision and Ophthalmology). Can you first explain a little about ARVO, how the opportunity to speak came about and how your talk was received?

ARVO is the largest ophthalmology organisation in the world. Every year researchers from all over the world meet up to discuss research in vision and ophthalmology at their annual conference.

The opportunity came about as Dr Helen Dimaras a Canadian researcher saw a paper I had co-written with Dr Mariya Moosajee, which was looking at how we could involve deafblind people in research. Helen is a passionate advocate of patient engagement and asked me if I would join her in speaking as part of a special interest group at ARVO. The panel also included Larry Mroz, a PPI professional from the Strategy for Patient-Orientated Research SUPPORT Unit in Vancouver, Professor Alastair Denniston a Uveitis specialist from University of Birmingham and Leslie Low a Patient Partner from the Canadian Retinoblastoma Research Advisory Board (CRRAB).

This is the first year that ARVO has had a dedicated session on patient engagement and involvement. Even though the special interest group was at 7am, around 40 people came along to the discussion. The audience were really engaged and we had a number of thought-provoking questions from the floor. There are a lot of people who are keen to hear about this type of work, want to learn about how to do it and were energised by the session.

Your talk focussed on the UK landscape – can you give us a brief overview of PPIE in the UK and how does this compare to Canada?

In the UK we have national structures in place and a mandate to involve patients and the public in health research. The UK has a national strategy – a 10 year plan for this work – Going the Extra Mile, we also have INVOLVE a national organisation which develops tools, resources and shares best practice. Later this year we will also have national standards for patient involvement, which will help to make sure that the work we carry out is genuine involvement and not tokenistic. NIHR also requires that 100 per cent of its funded research requires patient involvement. Judging from my discussions at ARVO I would say the UK is probably leading the way in having a national approach towards patient involvement in research.

In Canada, engagement operates more on a regional level, with different practices happening in different areas of the country. It is driven by researchers, patients and charities who are on the ground.

What would you say the future look likes for patient engagement in the UK?

We are definitely moving into co-production, this is when public member and ‘professionals’ are on an equal footing throughout all the stages of research design and delivery. Moorfields BRC is moving into this way of working with the Eye-YPAG, a new young person’s group built on the principles of co-production. The new UCL centre for co-production is a good resource if you would like to find out more about this way of carrying out research.

What is the importance of us sharing NIHR’s work on an international forum such as ARVO?

NIHR is funding world-leading research. It is important we are standing on an international stage and sharing our learning and findings with other researchers from around the world. It is crucial to have an exchange of scientific information. Patient partners often say that we are not joining up enough at an international level, and often express concern that scientists are duplicating research.

For patient and public involvement to have a session at a prestigious, international conference such as ARVO and to be sharing the great work that the NIHR has been at the forefront of driving here in the UK, is also important. We can show that carrying out patient involvement is possible, we have tools and resources that people can follow, it is important that we share that.

It is vital that we have patient involvement on the same agenda as scientific research, showing that the patient voice isn’t a barrier to research, but is in fact an enabler. The more we speak about patient involvement the more chance we have of making patient centred research the norm all around the world.

* patient engagement is the Canadian term for patient involvement – research carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘for’ or ‘about’ them.