Introducing Oli Rayner

Oli Rayner speaking at the launch of
our research strategy at the Wellcome Trust

When Formula 1 teams like McLaren or Ferrari design and test a new car, they need lots of input from their drivers. When it comes to designing and testing new cystic fibrosis treatments, we are the drivers and we need to speak up.

Over the next six months, I will be working as the Cystic Fibrosis Trust’s Special Adviser on Research and Patient Involvement. It is my job to enhance the involvement of people with cystic fibrosis in research in line with the Trust’s five year research strategy.

Why get involved in research?

We know much more about cystic fibrosis and how to treat it than when I was born in 1975. Survival has improved dramatically and people with cystic fibrosis are able to live much fuller lives. Most of the advances have resulted from research. 

There are many different types of research, including clinical trials. No drug can be licensed without robust data from proper clinical trials but a persistent shortage of volunteers slows progress.

Studies that don’t involve a new drug can be just as important in teaching us how to use what we have more effectively or revealing new things about the disease.

Currently in the UK, only about 50% of trials meet their recruitment targets and only around 10% of people with cystic fibrosis participate in clinical trials. Patients pay the price for under-recruitment because it means fewer treatment options.

We want to see research embedded in the culture of all cystic fibrosis clinics. This will encourage us all to think about how we can do things better in the future and how we can use the tools we already have more effectively.   

With potentially transformative treatments in the pipeline, increasing knowledge of the genetic and molecular basis of the disease and unprecedented commercial interest in cystic fibrosis, this is an exciting time and it is important that we make the most of the opportunities ahead.

As patients we have a responsibility to speak up and explain what is important . Cystic fibrosis is a complex disease and researchers will not necessarily understand what it is like to live with the disease, what is important to patients in the real world or what are the most relevant outcome measures unless we tell them.

What do I want to achieve?

My key objectives are to:

·        make sure people with cystic fibrosis have an easy way to find out what clinical trials are open to them and access to the information they need; 

·        put mechanisms in place to make sure decisions about the commissioning and design of clinical studies take into account the views of people with cystic fibrosis;

·        make sure the community is aware of the projects being funded by the Trust, why they are important and how they fit into the broader strategy; and

·        work with the Trust to establish systems and make better use of technology to engage people with cystic fibrosis and make sure their views feed into every aspect of research.

I will also be helping the Trust with a broader long term initiative to give patients more control over their own care and better tools to manage their own health. We want to make the best use of new technologies to:

·        allow people to manage their own health from home with minimal disruption to life;

·        identify early warning signs so we can take action before things get too bad; and

·        systematically learn what works for individuals and feed this back into the system in a way that helps us see broader patterns.

I will be speaking to a broad range of people in the cystic fibrosis community including others with the condition, parents and carers, clinicians and other experts; and looking at what works well elsewhere.

What do I bring to the table?

I graduated with a 2:1 in Law from University College London in 1998 and, as part of this, I studied Medical Ethics. I then spent 12 years working in investment banking and venture capital, advising fast-growing companies in the media, technology, life sciences and renewable energy sectors.

Recently, I have had to step back from full-time work so that I have more flexibility over my time and can prioritise my health. I currently have a number of roles which each take up small amounts of my time.

Among these is consumer referee for Cochrane’s Cystic Fibrosis & Genetic Disorders Group, which carries out systematic reviews of the evidence available to support current treatments, and author of a regular column on drug development and clinical research for CFUnite.org.

In June 2013, I was selected by Eurordis to attend their highly-regarded Summer School for Patient Advocates in Drug Development, Clinical Trials and Regulation.

This experience has given me the ability to understand and process technical information, think critically, interrogate experts and communicate results in non-technical terms. On top of this, I have my own experience of living with cystic fibrosis and taking part in clinical research.

I am excited about this opportunity and interested to speak to people across the cystic fibrosis community. If anyone wants to contact me they can email me at oli.rayner@cysticfibrosis.org.uk or talk to me on Twitter: @oli_rayner.

Find out more about patient involvement in cystic fibrosis research when Oli joins Janet Allen (Director of Research) and Ed Owen (Chief Executive) for Ed’s Question Time live on our forum at 1:00 pm on Wednesday 11 September.