The Patient Voice in Arthritis Research

The UCD Centre for Arthritis Research have begun public and patient involvement (PPI) scheme called The Patient Voice in Arthritis Research.

PPI is not about recruiting patients for research studies, nor is it solely 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 the decision making processes around research.

We want to allow patients and their families to express the questions and needs that matter most to them. Similarly, we would like to ensure that research studies involving patients are designed to be sensitive to the needs of the study participants. If you would like to find out more and guide Arthritis Research please contact: patientvoicearthritis@ucd.ie

 

 

 

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The Inaugural Patient Voice in Arthritis Research Discussion Forum took place on 1st December 2017 in Dublin. The UCD Centre for Arthritis Research aims to incorporate public and patient involvement (PPI) into their standard research process. Three PPI schemes were proposed for discussion at the forum:

1. Formal Participation

The creation of a steering committee, with patient members, that would review outputs, grant proposals and develop longer term strategies for arthritis and rheumatic disease research.

2. Casual Participation

The formation of patient panels, who will give input into specific research plans, as and when required, in a manner that suits the patient.

3. Patient Educators

Patients set challenges to our graduate students. The graduate student must consolidate the patient needs and clinical feasibility and develop a research strategy to address this challenge. The primary goal is not to achieve a solution to the problem (although it may), but rather to train the graduate to understand and account for the patient perspective within their research.

These three schemes had the capacity to grow with demand and offered a range of flexible ways that patients could be involved dependent upon their individual interest and availability. Attendees were asked to discuss the interest, barriers and facilitators of the proposed schemes.‌‌

Download a full report of the event here The Inaugural Patient Voice in Arthritis Research Discussion Forum

And pictures from the event are here

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In response to feedback from our patient partners within The Patient Voice in Arthritis Research we wish to develop a 5-year research strategy for fibromyalgia. A discussion forum took place on 7th June 2018 at UCD Conway Institute.

An initial discussion with patients living with fibromyalgia refined the forum meeting agenda to three research areas:

1. Defining a pathway of care

Question: Who should be the primary care giver for fibromyalgia patients?
Can we develop a dedicated "Pathway of Care" for people living with fibromyalgia to make the journey through the healthcare system as efficient as possible?

2. The complex interplay of metabolism in Fibromyalgia

Question: Can metabolism and the gut flora (microbiome) inform accurate classification of fibromyalgia patients?
Can these be used to group patients, such that patients get the correct care, fast?

3. Patient Registry for Fibromyalgia

Question: Can collecting information about fibromyalgia patients allow us to learn about behavior patterns and their association with disease development?
A patient registry is a collection of standardized information about a group of patients who share a condition or experience. As fibromyalgia is a complex disease, likely consisting of numerous subsets of underlying diseases, a patient registry could be extremely valuable to identify patient subgroups and enhance treatment and management outcomes.

A full report of the event will be available soon.