The Patient Voice in Arthritis Research
The UCD Centre for Arthritis Research has begun a public and patient involvement (PPI) initiative called The Patient Voice in Arthritis Research.
PPI is not about recruiting patients for studies, nor is it only about raising public awareness of our research. Rather, it is a way to ensure that the real-life experiences of patients and their families are considered in research decision-making.
We want to allow patients and their families to express the needs and ask the questions that matter most to them. We wish to ensure that studies involving patients are designed to be sensitive to their needs. If you would like to find out more or to get involved, please contact us:
e: firstname.lastname@example.org | t: 01 716 6809
Highlights from The Patient Voice in Arthritis Research
- We have restructured our research centre such that 3 of the 10 members of the steering committee in charge of the governance of the Centre are patients, each representing a specific disease area: inflammatory arthritis, degenerative arthritis and rare disease and paediatric (child and adolescent) rheumatology. Read more here.
- In response to patient requests, we now host an annual research conference completely open to the public. Read about our first conference here.
- News Rheum, our patient/researcher co-produced newsletter, highlights our research, patient-run community events, and how to get involved. Download previous issues and find out how to contribute here.
- In response to calls from patients, we have started research into an entirely new area for us: The chronic pain disorder Fibromyalgia. This research programme is co-designed directly with our patients to meet their priorities. As well as the members of The Patient Voice, we will be working with Arthritis Ireland, FibroIreland and Chronic Pain Ireland to help reach interested patients to help us at every step of our fibromyalgia research programme. Read more about it here.
- We now have six projects with one or more Patient Insight Partners as part of the project team and are dedicated to having patient insight embedded into all future projects.
- We have Patient Insight Partner co-applicants on a number of current grant applications.
- Our most recent researcher hires had patients on the interview panel and we are dedicated to continuing this in future.
CAR in the Community
- We are working with iCAN Ireland, The Irish Children’s Arthritis Network for WORD Day (WOrld Young Rheumatic Disease Day), March 18th, 2019.
- This includes a research seminar where researchers will present to young people living with arthritis (aged 10-20) and a fun, interactive research workshop, where the young people can learn research methods so that they will be able to conduct their own research and present it for WORD Day 2020.
- Dr Emma Dorris also held a storytelling workshop with iCAN Ireland to help young people living with arthritis to tell their story and what they wish others knew about their experiences through animation. These animations will be released for WORD Day 2019.
- We are working with Arthritis Ireland to name a human gene! Our research was the first to uncover how the gene works. So little was known about this gene that it didn’t yet have an official name. Due to our research, which was funded by Arthritis Ireland, HRB and IRC, we are working with the official gene-naming body to give it a name. We wouldn't be able to carry out our research without patients donating their samples and the public funding our research; whether that is via donations to Arthritis Ireland or through the taxes that fund the Health Research Board and the Irish Research Council. Therefore, we are working with Arthritis Ireland and asking the public to help us name a human gene: You can vote for your favourite name here.
- We are working with 22q11 Ireland and Presentation Secondary School Tralee to increase awareness of the rare disease 22q11 Deletion Syndrome. The second-year CSPE students of Pres Tralee are creating patient experience posters for people living with 22q11 Deletion Syndrome or their familial carers. These posters will help people living with 22q11 Deletion Syndrome to share their day-to-day experiences of living with a rare disease. The posters will be used by 22q11 Ireland to raise awareness. The students will gain an understanding and insight of living with a rare disease. By meeting with people living with a rare disease and learning about their lives, these students (and potential future leaders) will also start to help their local community become more inclusive and welcoming for people with chronic illnesses.
- For Rare Disease Day, we created an animated video to raise awareness for the rare disease CRMO/CNO (Chronic Nonbacterial Osteomyelitis).