How PPI helped develop a tool for people with Rheumatoid Arthritis
20 July 2018
A large clinical trial of SARAH showed that it was effective, safe and cost-effective to deliver, and it has since been adopted into National Institute for Clinical Excellence (NICE) guidelines.
Cynthia Srikesavan is a researcher in the CLAHRC’s ‘Behaviour change: Exercise and rehabilitation’ research theme, and is working on a number of projects aiming to implement the SARAH training in the real-world, outside of a clinical trial setting.
One of these projects is called ‘mySARAH’, an on-line, self-guided version of the SARAH exercise programme for patients with rheumatoid arthritis to follow at home.
To help do this she has been working with patients and members of the public in a very positive way throughout.
Cynthia has gone on to develop ‘mySARAH’.
Cynthia invited patient and public contributors on the NHS Patients Active in Research: Thames Valley website and the National Rheumatoid Arthritis Society Oxford patient group to collaborate in designing mySARAH website.
She and her colleagues conducted face-to-face or phone discussions with the first group of five patient volunteers to discuss their needs and expectations for an online hand exercise programme. Based on their suggested features such as, ‘Produce short videos; ‘Keep it simple’; ‘Have email reminders’; and ‘Emphasise why exercising the hands is important’, the online prototype of mySARAH was produced.
The second group of six volunteers was invited for a half-day meeting to provide further input on design, content, font size, pictures, logo etc. of the prototype. They also took part in producing preliminary exercise demonstration and interview videos.
Finally, two volunteers are featured in interviews, exercise demonstrations, and mySARAH promotional videos.
All of this was done over several meetings and people were paid for their transportation and parking charges and given lunch and refreshments on each occasion.
These PPI contributors helped the research team to understand the user perspective and develop a user-centred intervention. Cynthia also reports that it helped the team to feel confident that they were on the right track and that their work was going to make a difference to real patients.
mySARAH is now all set for testing in a small group of patients before its official launch.