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June 2019
Chronic Pain Support Groups Research Findings!
Brief summary of Emily’s research findings
Note from Emily:
Dear All,
Thank you so much for taking part in my online study on chronic pain support groups earlier this year! I am very happy to share with you a brief summary of my findings. 😊
I hope you will find them to be of interest, and that you may share them with your fellow group members.
For security reasons I am not allowed to share the file here. Anyone wishing to read the brief summary can obtain them upon request via emailing me carole@fibroflutters.com
Catalyst event – Making sense of Pain 26th June 2019
In June I travelled to Manchester to take part in a one day Catalyst event – Thinking Matters Making Sense of pain, funded by NHS Research & Development North West and The University of Liverpool. I was in attendance as an ‘expert patient’, about chronic pain and it was all about developing new ideas for chronic pain research.
To be honest I was lucky to be allowed to take part as it was a regional event and, naturally, I live in the North East and not Manchester region, however I am from the North West England originally. However, I felt honoured to be able to join in.
Brainstorming with multi-stakeholders to hopefully generate research questions to progress the research avenues for chronic pain. After a talk about who and what ‘Thinking Matters’ are we all put forward suggestions for discussion topics that would lead us into the next phase of the day.
I’d never attended such an event before so it was a learning curve for me which also taught me how such a technique can be used to generate new ideas, as opposed to the usual roundtable technique for instance. It is a very similar process to a hackathon!
Varying types of stakeholders gathered to have a massive brainstorm, many discussions weighing up pro, cons, necessity and topic choices etc and whittled them down to possible research ideas. You could move from one discussion to another and buzz about like a bee, or you could select a topic and stay with it for the duration. There was no strict ruling saying, ‘thou must do this, or that’. I chose to buzz about in the beginning, but later got attracted to one discussion and stayed there because there were issues for debating regarding how to treat people with chronic pain that as a patient, and a patient reflecting patients voice did not agree with. The concept was good but in practicality would never work for long term pain sufferers which I am and so are FibroFlutter members. Pain management is a complex task not just for patients and I have full respect for the health professionals who are trying to design new ways of tackling it. Having patients there to speak up about what works and what doesn’t is a sure fine way to help progress… I hope, anyways.
I’d never been in a room with as many health professionals before, in fact through experience of helping to find HCP’s to take part in conferences it has been difficult. Therefore, this day was ‘especially-special’.
Now onto something a little different…
July 2019
Patient Focused Medicine Development WG1 Workshop in Brentford
Towards the end of 2018 I joined in with discussions being held by the Patient Focused Medicines Development (PFMD), which then led to my involvement in two working groups on initiatives being ran by them. Every month we had group monthly catch up calls to discuss project progression and next steps whilst between us we would perform tasks in between.
My involvement with PFMD are Volunteer roles as partners on initiatives and they can viewed via my profile on Synapse, with FibroFlutters. You can read about these initiatives via the link provided at the end of this section and also view the work from WG1 that we presented, and ran a workshop, as a team in Brussels at PEOF2019.
Projects that are utilising the skill-sets of varying stakeholders to help improve patient engagement within the drug development process, and of course the clinical trial process. Development of patient engagement quality guidelines, providing information that is clear and in lay language for all to understand alongside developing the provisions for potential training in patient engagement.
With WG1 we headed off to Brentford and the GSK HQ for our day-long workshop, 15th July, where we discussed how to take the project forwards and develop it to a point for presentation at PEOF in September. As a Patient expert / Patient organisation I was fortunate enough to become one of the core group members giving the chance to present our work at the first ever ‘Patient Engagement Open Forum’ (#PEOF) in Brussels at the end of September 2019.
Disclosure GSK had no part or role in the workshop event they just kindly provided us the meeting space as one of our group was an employee there.
Carole Scrafton, Oana Bernard, Natasha Radcliffe, Claire Nolan, Oleksandr Gorbenko,
From front left to the right:
Anne-Marie Hamoir, Chi Pakarinen, Katherine Deane
August 2019
Acceptance onto the IMI2 JU pool of expert patients
It was a pleasure to receive word that I had been accepted onto the IMI2 JU pool of expert patients alongside a few of my fellow patient advocates that I know from the chronic illness communities.
Another exciting new role for me as I try to implement myself in places where I can help to further advance research. Also, in the hope to encourage other people with chronic illnesses to follow suit and get involved.
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