The inaugural Patient Voice in Arthritis Research discussion forum

We had our first meeting on 1st December 2017 at Brooks Hotel in Dublin City Centre. A huge thank you to everyone who attended, especially on a particularly chilly Friday evening. We commissioned the journalist Marie Boran to record the meeting and prepare a report, from which we will develop our Public Patient Involvement (PPI) scheme.

Dr Emma Dorris

We kicked off with a little introduction from me, Dr Emma Dorris. I had prepared an introductory booklet to UCD Centre for Arthritis Research (UCD CAR) and the multidisciplinary researchers investigating arthritis in UCD. Download it here: An introduction to the UCD Centre for Arthritis Research 

Our first speaker was Pat Clarke, former CEO of Down Syndrome Ireland. Down Syndrome Ireland, with funding and support from the National Children’s Research Centre and Arthritis Ireland recently worked with one of our researchers, Dr. Charlene Foley, to launch the largest worldwide study to date into Down’s Arthropathy, a type of juvenile arthritis in children with Down syndrome. You can read about Charlene’s findings here. Pat gave an overview as to why they decided to team up for this project, and explained how the community approach that Charlene took resulted in truly positive results, both clinically and scientifically.

Pat Clarke

We proceeded onto an interactive piece “My Arthritis Journey”. We are lucky enough to have a new member of the UCD CAR team join us this December, Dr. Susie Donnelly (Welcome Susie!). Susie is a sociologist and has worked with UCD Applied Research for Connect Health (ARCH). ARCH have previously used journey mapping (explained excellently in their blog post here) so we adapted a mini-version of it here. The idea behind it is to highlight challenges and questions that the patient may experience. It also charts the emotional ups and downs of learning to live with a chronic long term illness. We then posted all the journey maps on the walls so that everyone could view them during the coffee break. This allowed them to see, from other patients, the ups and downs both personal/specific and shared between patients. It helped to get a sense of what needs to do be addressed or avoided to improve the patient experience of their individual disease and its management and stimulated the conversation around this.

After tea and coffee we moved onto the Public Patient Involvement (PPI) Initiative. Our speaker was Dr. Deirdre O’Donnell from the UCD School of Nursing, Midwifery and Health Systems. Deirdre is the co-founder of the Older People's Empowerment Network (OPEN). Her research interests include integrated health care emphasising public and patient participation and collaboration, elder abuse prevention and intervention as well as later life well-being and healthy ageing. She gave us an overview of the power of PPI and some of the obstacles that are currently in place in the Irish research landscape. Personally, I found it fantastic and have pages of rapidly scribbled notes, ideas and structures to put into place to help ensure the success of our PPI scheme in UCD CAR.

Dr Deirdre O'Donnell

We have identified three areas of PPI that we would like to initiate in UCD CAR as follows:

1. Formal Participation

The creation of a steering committee, of which patients will be members. Meeting 3-4 times per year, this committee 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 casual input into specific research plans, as and when required, in a manner that suits the patient. No formal commitment is required. Using surveys, telephone interviews or tele-conferences, it is a way to allow patients to have their input as the need arises.

3. Patient Educators

Starting with a pilot scheme, we would invite patients to 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 graduate would liaise with the patient during the short project. The project will then be presented on a research day, and both patients and researchers would evaluate it together. The primary goal of the patient educator proposal 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.
We divided into three groups, with group discussing a single proposal. We had two facilitators per group (a mix of researchers, patients and charity representatives). Below is from the guide for facilitators:

The aim of this discussion forum is to receive input into:

1. How feasible is the proposal

  • Are there barriers to participation?
  • Can they be overcome?
  • Can they be circumvented?

2. How interesting is the proposal

  • Would you like to be involved?
  • Can we improve its attractiveness?
  • Can we develop it to be more inclusion?
  • What would make you interested and keep you interested in participating?

3. How accessible is the proposal?

  • Are there strategies/technologies/communication pathways that would allow you to participate more easily?
  • Are there terms/language that need clarification?
  • How can we make more people engage with the scheme?

The discussion really seemed to flow. The audio of the discussion was recorded for each group and notes taken by the facilitators. Marie will incorporate it into her report from the meeting, which will be the basis for our PPI scheme. The preliminary date for the report is the 3rd week of January.

 

Finally, a big thank you to all of those who helped on the evening: my right hand women, Steph; our speakers Pat and Deirdre; our facilitators Ricardo, Oonagh, Claire, Wendy, Shane and Denis; Elaine and Miriam from UCD Conway for their help in meeting preparation; and Gerry Wilson, head of UCD CAR. The meeting was funded by the UCD SFI-HRB-Wellcome Biomedical Research Partnership Institutional Strategic Support Fund (ISSF).

The Patient Voice in Arthritis Research is part of a growing Patient Voice movement within UCD Conway Institute to embed patient views into research. I’m delighted to be part of this developing movement and received advice, input and help from many within UCD and beyond (Amanda, Claire, Thilo, Avril, Deirdre, to name but a few). Thank you all.