Putting people with lived experience at the heart of research

People with lived experience are at the heart of this ME/CFS research study and involved in all aspects of the research, from design, governance and delivery.

By Professor Chris Ponting, Investigator, MRC Human Genetics Unit at the University of Edinburgh.

Read a public perspective from study co-investigator Andy Devereux-Cooke.

Myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS) is a disease with no diagnostic test, no known cause and no effective therapies.

The main aim of the DecodeME study is to find genetic causes of why people become ill with ME/CFS. If we understand what those genetic causes are, then we will for the first time have good evidence for where to start research. Without a strong foundation of evidence you cannot build a strong foundation of future science. The genetics is important, but really only as a first step towards understanding how to intervene and move on towards drug targets and effective therapy.

If we research a particular disorder, and we don’t involve people who have that disease, then I don’t think we’re doing our job. We’re isolating ourselves from the problem that we’re trying to help solve. The DecodeME study puts the lived experience of people with ME/CFS and carers right at its heart.

Video credit: DecodeME
Video transcript and on-screen captions are available by watching on YouTube.

Involving public voices and lived experience

We have involved people with lived experience in every single aspect of the project using the principle of ‘nothing about me without me’. You cannot work with just one or two people to represent the full spectrum of views. To do this well, it needs involvement from many people. I have seen science where Patient and Public Involvement (PPI) is thought of as being an individual who comes in and represents everyone, so we’ve tried to move away from that.

A patient advisory group helped focus our views and priorities, as part of a consortium that included people with lived experience as investigators. We then had discussions with funders where PPI was central. This led to funding from the Medical Research Council and the National Institute for Health and Care Research (NIHR) for our study.

We’ve tried to involve a variety of charities through a network called Forward-ME. We had a lot of interest from people with lived experience in joining the study, the constraint was the budget we had to pay expenses. We paid people for their expenses according to the national guidelines set up by INVOLVE and NIHR.

People with lived experience made the language of our study questionnaire comprehensible and relevant to people from all walks of life. But especially to people whose symptoms often reduce their ability to understand complex phrases through brain injury and brain fog.

Activities we run

The DecodeME study is jointly governed by people with lived experience. The management group is made up of three people: myself, Sonya Chowdhury, Chief Executive of Action for ME, and Andy Devereux-Cooke. Andy is one of the co-founders of the Science for ME forum, who has lived experience of ME for many years. The governance is very straightforward: we have equal votes.

Video credit: DecodeME
Video transcript and on-screen captions are available by watching on YouTube.

We also have a PPI steering group made up of people representing groups or networks from the ME/CFS community. The steering group contributes between one and three of its members to three delivery teams: a cohort team, a genetics team, and a marketing and communications delivery team. Again, PPI has equal voice in these teams. They feed back to the PPI steering group and explain what’s ongoing. Each of those groups feeds advice back into the management group.

The impact of public involvement

The impact of PPI has been far-reaching and has helped us achieve the following goals.

Achieve high study participation

Making our questions understandable and relatable has meant greater participation in the study. This means greater statistical power for finding true discoveries and greater trust in the project.

We’ve interacted with over 10% of the approximately quarter of a million people in the UK who have ME/CFS. 37,000 people have registered and 26,000 people have completed the survey.

To date we plan to send 20,000 people a DNA saliva sample collection kit, which is fantastic. In other studies, a sample collection kit return rate of between 60 and 85% is an indicator of engagement in a project. We have a return rate of 85% which is phenomenal.

Secure trust from the community

There will always be people who have questions about ME/CFS studies. There’s a long history of this, and I support anyone asking good questions.

One of the fantastic things about DecodeME is that we have people with lived experience participating in all our communication activities, including social media and webinars. Members of the public have been responding robustly to questions on social media which might otherwise have undermined our project. This allows us as scientists to go ahead and do what we’re best at, which is the science and not the social media.

Seek different perspectives

We can think, as scientists, that we understand all aspects of our science but we, as individuals, are of course going to be limited. That’s why we do team science, to make use of different perspectives. That isn’t, or shouldn’t be, limited to just the scientists. Team science can involve many other people with different perspectives. Just as in team science, people can contribute in ways that are unexpected because of their different viewpoint.

Be motivated to do our research

Working alongside, and with, people who have lived experience is a huge motivation for us. Not a single day has gone past when I question why we are doing this. Because on a daily basis, myself and the team are told by people how much it means to them.

Fight stigma and give people hope

I think we have given people hope. Hope is important for a lot of people due to the lack of diagnostic tests, known causes and effective therapies for ME/CFS. We also help people to fight stigma, which is enormous. Stigma happens within families and among close friends and into health services. We’ve been told that we are helping people on a day-to-day basis through this project by being very open about what we do.

Improve two-way understanding

As a principle I think breaking down barriers will always improve understanding in a two-way manner. I will better understand why I’m doing what I’m doing and how to improve the science. And the people who we’re trying to help will better understand the difficulties of the science and reduce misunderstandings that do sometimes happen.

Personal impact of the experience

I can never go back, now I’ll always do PPI in my research. The problem is it’s difficult to do and it involves energy and money. You spend a huge amount of time, but it is time well invested. It will restrict the volume of science you will perceive that you can do, so you have to do one thing and you have to do it well.

DecodeME staff at work. Credit: the University of Edinburgh 2024

Lessons learned

Take the time to listen and ask questions

Give the time to people that they deserve. Allow people to challenge your views and listen to them because you yourself may be wrong.

Be inclusive

We take minutes for all meetings so that people who can’t attend because of symptoms and illness are able to keep up whenever they can. That’s really important for involving people whose participation is limited because of the disease that you’re studying.

The importance of trust

As an investigator on this project, I did not choose the people who were part of our PPI steering group and I don’t sit on the steering group. My colleagues, people with lived experience, undertook a process to recruit people to the steering group.

The value of external perspectives

There is an assumption in science that only scientists have a valid perspective and I would challenge that assumption. I’ve since incorporated PPI into other parts of my scientific life that otherwise might not have been thought of as being important. Even if you disagree with people’s views, it will give you pause for thought and will help you to justify what decisions you’ve taken or will take.

PPI should be integrated into all research

I would hope that PPI is integrated into science, in a way that it almost disappears because it’s already woven into the science. To think of science and PPI as somehow separate, is part of the problem. I think funders should ask it of everyone they fund and ensure that people with lived experience can be investigators on funding applications.

Last updated: 20 February 2024

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