“It’s never about me, it’s about all the people affected by arthritis”

Our group of patient insight partners.

This week is Volunteers’ Week, and to celebrate we’re looking at some of the work done by our amazing volunteers.

We work alongside many people with arthritis, to make sure that we’re focusing on the issues that matter most to them. The perspective of people’s lived experience is crucial to ensuring that the research we fund is relevant, accessible and sensitive.

That’s where our patient insights partners (PIPs) come in. Our PIPs are people with various conditions who volunteer to work with researchers and healthcare professionals to ensure our research is the most relevant. We work together on setting research priorities, reviewing research proposals and evaluating research results.

Patient insight partners play such an important role in our research activities, and we’re so grateful for their time and support.

Here, two of our PIPs, Debs and Robin, tell us why they chose to get involved and what volunteering means to them:

Deb's story

“It’s really lovely to have a feeling that no matter your feelings, thoughts and answers, someone is listening and trying to make changes for the better.”

Debs

Debs first got involved with us five years ago, after being diagnosed with osteoarthritis. At just 42, she felt unrepresented by the traditional depictions of arthritis, so decided to get in touch to see if she could get involved.

Volunteering also had a bigger meaning for Debs – her condition had forced her to give up her full-time job, which she had struggled to deal with: “I was in a dark place. I felt I had no place in society and was a burden to my family.

Debs, a patient insight partner.

“To be useful again and to feel that I could make changes that would help generations to come and potentially reduce the numbers of people affected by finding a cure or treatment, that’s why I became a patient insight partner.”

Debs is currently working on a new booklet that will help researchers with their applications and, more importantly, including patients in their studies.

While Debs’ role allows her the freedom to work mostly at home, it’s also been a great opportunity to meet new people: “I thoroughly enjoy meeting all the people involved in the charity, seeing the brilliant minds in the same room as patients and feel part of Team Versus Arthritis.”

Robin's story

"Knowing that I am able to contribute to a project that can make a life-changing difference, gives me enormous satisfaction."

Robin


Robin, who was diagnosed with ankylosing spondylitis almost 30 years ago, has been a patient insight partner for two years. Since then, he’s volunteered in a number of research projects, and has taken part in everything from assessing research applications to sitting on our Treatment Subcommittee.

His work, Robin says, has given him not only an insight into our research, but also into the impact it has on people with arthritis.

It’s also brought him a great deal of personal satisfaction, along with the comfort that everything done is being done for people affected by arthritis: “Even though it may sometimes be a long time before the outcome of the research is fully understood and accessible to people, it’s knowing that however little or significant the outcome, the ability to positively benefit and improve the state and quality of lives of people is highly important and valuable.

“And ultimately for me, my involvement is hugely satisfying and rewarding”.

Thank you

Thank you so much to Robin, Debs and all of our incredible patient insight partners.

Get involved in our research activities

You can learn more about our research, and the work done my our patient insight partners here. To find out more about becoming a patient insight partner, please contact us at patientinsight@versusarthritis.org.