17 August 2022
We recently spoke to registers champions Dr James Taylor, and research nurse, Lynne Stockham about their top tips for recruiting to the BSR Psoriatic Arthritis Register. They're part of the team at Northampton General Hospital NHS Trust and see the register as a vital way of assessing the impact of the condition on patients and responses to treatments over the long term.
Tell us about your research.
James: We have an active Research and Innovation (R&I) centre with experienced staff, so it’s straightforward to get studies up and running.
Why are registers so important?
James: Registries allow us to recruit large numbers of patients which in turn helps with local grant allocation. By taking part you receive lots of information about the overall outputs which we feed back to the various units.
Lynne: Most patients want to take part in research because they’ve suffered for a long time and want to help others. With diseases with a genetic factor, patients feel participation could benefit their own family and other families in the future.
How do you recruit patients to the register?
James: When we see people in clinic, we ask them if they mind being contacted by a research nurse. If they say yes, we pass the names on to Lynne and her team to contact them.
Lynne: We've also got a pathway for referring patients onto biologics which is controlled by the pharmacy. If we miss them in clinics, pharmacists will tell us when a patient is about to start on biologics because we need to recruit them before they start treatment.
What other ways do you use to recruit patients?
Lynne: We used to have leaflets in clinic, but these were removed during Covid because of infection control. We’re now going to put posters up to tell patients about the registers and other studies they can get involved with.
How do you work with colleagues in rheumatology?
Lynne: The rheumatology nurses and doctors will often refer patients to us to recruit. As everyone is busy, I also send emails out just to remind them to look out for patients.
Do you offer flexible ways for patients to get involved?
Lynne: Patients only tend to say no to getting involved if they have work commitments that mean it’s difficult for them to get to the hospital in the week. During Covid we were doing telephone appointments and follow ups, so we do offer people this option if they don’t want to come in for an extra visit.
Why would you encourage other units to get involved with registers?
James: It’s rewarding to find patients, recruit them and put them in studies. With the registries you get regular feedback through newsletters to update you on the findings and you can benchmark your unit.
What are your top tips for recruitment?
- Make sure you have close relationships with colleagues in rheumatology and pharmacy with clear communication channels
- Talk about the registers in meetings to remind people how important they are
- The team who run the registers are friendly and approachable. Ask them questions if you’re facing any challenges and they will help you.
The BSR Psoriatic Arthritis Register is a UK-wide register which is run by the University of Aberdeen on our behalf.