Why I became a Research Partner: How Ayo and Robin are shaping arthritis research

Want to share your experiences and shape our research? Or perhaps you want to have a say in what arthritis research we fund?

If this sounds like you, you might be interested in becoming one of our Research Partners.

We chatted to our Research Partners Robin, who lives with ankylosing spondylitis, and Ayo, who lives with lupus, to learn why they got involved – and why you should too.

What is a Research Partner?

We want to make sure that our research is genuinely helpful to people like you living with arthritis.

That’s why we work closely with Research Partners. These are people who live with arthritis or another musculoskeletal condition, who shape our research by sharing their perspectives.

As a Research Partner, you could:

• Join funding panels and help assess if a researcher or project should receive our funding.
• Help us agree what research topics are important to fund.
• Work with researchers to shape their research, making sure it’s relevant to people living with arthritis.

How becoming a Research Partner opened Ayo’s eyes to the latest arthritis research

Lupus is a long-term condition that can cause inflammation in the skin, organs, and in various other places in the body.

Ayo first started experiencing symptoms in 2008, when she was pregnant.

"My symptoms were shortness of breath, tight and sharp pain in the chest area with fatigue,” she explains.

“Later, I started experiencing intense joint pain in both of my shoulders, elbows and wrists, which made it difficult for me to carry my daughter who was only six months old at the time.”

Getting a diagnosis was a relief for Ayo. “Being diagnosed meant I was able to start treatment for my lupus symptoms and I made full recovery from the hospital,” she says.

Then, two years ago, Ayo decided to join us and become a Research Partner.

“I joined Versus Arthritis as a Research Partner in 2022,” she explains. “Since then, I have participated reviewing research funding applications.

“I was provided with adequate training and support which was very useful in reviewing applications for funding."

Giving back to the healthcare system: Robin's Story

After experiencing symptoms for years, Robin was finally diagnosed with ankylosing spondylitis when he was 23 years old.

This is a type of arthritis that mainly affects your back, by causing inflammation in the spine.

Shortly afterwards, he was also diagnosed with:

• Osteoarthritis.
• Peripheral joint arthritis. This means arthritis in the joints of the arms or legs. This includes shoulders and hips, elbows and knees, wrists and ankles, hands and feet.
• Hip impingement. This is when the ball and socket of your hip joints don’t fit well together. This can be painful, and stop your joint moving normally.

Robin took part in arthritis research at his local hospital, and now he has taken this one step further by becoming our Research Partner.

“I help shape and develop research priorities and strategies,” he explains. “I also review research funding applications being made to the charity.”

“This has led to further involvement in research, helping and supporting researchers develop research projects and with writing funding applications from a lay perspective with use of plain English.”

Taking part in research has been rewarding, and it’s also helped Robin get the care his needs for his own condition.

“I am passionate about the important role that research has and in... offering the opportunity to deliver better care and treatments, and ultimately to lead to cures, reducing socio-economic burdens, improving the quality of life for those with arthritis and musculoskeletal conditions, and reducing the financial burdens of healthcare.”

Want to become a Research Partner?

Our researchers are working tirelessly to make arthritis preventable, manageable, and treatable. But we can’t do it alone.

Your thoughts and opinions could help guide our researchers and show them what’s important to people like you living with arthritis.

So, why not join us and become a Research Partner today?

Who can become a Research Partner?

We want people with lived experience, parents, partners, or carers of people with arthritis, to have their say on the research we fund.

We’ll give you all the training and support you need. Plus, most of our work together is online, so it’s easy to get involved.

We also want to make sure that our research represents a diverse range of people, so that no one is left behind.

For that reason, we’re particularly keen to hear from men, people who are ethnically and culturally diverse, as well as those living with disabilities.