How patients have shaped the JIGSAW-E project
The views of Patient Champions about their involvement in the JIGSAW-E project
(15 responses)
Illustrative quotes:
“I had read information provided throughout my involvement and I had also asked questions wherever relevant”
“I take my understanding of the overall objectives and then, as an individual, apply these in as many ways as I can to spreading knowledge about arthritis self management to as many people as possible.”
“JIGSAW-E is a vast project and i believe that the Lay Member cannot be expected to understand or even be aware of everything that is going on in JIGSAW-E”
Illustrative quotes:
“I feel that as a patient my thoughts are listened to and valued equally with the researchers and clinicians”
“A more regular, shorter update of what was going on in the project would have been valuable. Information was provided, but this was often embedded in other information”
“Satisfied in any help and contribution I can make to the wider project aims.”
Illustrative quotes:
“My experiences as a patient in the early years of getting help managing Arthritis,and areas that in primary care education can benefit patients ,carers and anyone involved in management”
“Work undertaken in Quality Indicator questionnaires, website design, active participation in meetings”.
“I helped with the translation [of the OA Guidebook] from English in the Dutch language and also to the situation of the patient”
Illustrative quotes:
“Always encouraged to express opinions in project specific meetings but fewer opportunities to meet and review overall project progress.”
“No barriers! Easy & comfortable meetings :)”
“Meetings are always relaxed,and no matter how small my comments,they are always met with positivity”
In general, what are your thoughts about including Patient Champions as part of projects like JIGSAW-E?
Illustrative quotes:
“Important to include patients with the condition from the start. Patient Champions can “grow” with the project. They can promote and support the project, and encourage other patients and clinicians to get involved”
“Patient Champions always make a valuable contribution to dissemination of information. They generally have first hand knowledge of a condition and the work being done to assist those similarly affected.”
“I think it is very important to know what are the thoughts and opinions of patients, they are what it is all about.”