Welcome back to PsA HQ! I’m Mel Brooke and I am currently on a mission to break down the barriers that can put people off getting involved in rheumatology research!
In this super short podcast episode I’m sharing another PsA HQ blog post with results from the UK Rheumatology Patient Research Partner survey, this time as an audio video production featuring another 'ai friend'. I hope you are enjoying these creative approaches to information sharing :-)
My website and contacts can be found via one of my links here and I would love it if you follow me on your listening platform for news of more episodes!
If you would like to share your experience of research involvement from a patient or researcher perspective, or share a research opportunity or news please get in touch - send an email me at psazzgroup (at) gmail.com
Music by Yevhen Onoychenko from Pixabay
Welcome back to PsA HQ! I’m Mel Brooke and I am currently on a mission to break down the barriers that can put people off getting involved in rheumatology research!
In this episode I’m sharing an audio version of a PsA HQ blog post with results from the UK Rheumatology Patient Research Partner survey as a discussion between our ai friends - starting with this post that looked at 'Who Gets Involved in Research—and Who Gets Left Out?'
My website and contacts can be found via one of my links here and I would love it if you follow me on your listening platform for news of more episodes!
If you would like to share your experience of research involvement from a patient or researcher perspective, or share a research opportunity or news please get in touch - send an email me at psazzgroup (at) gmail.com
Music by Yevhen Onoychenko from Pixabay
Welcome back to PsA HQ! I’m Mel Brooke and I am currently on a mission to break down the barriers that can put people off getting involved in research! In this episode I’m joined by long time 'PsAZZer' and patient expert partner friend Jana James. Join us as we chat around some more of the insights and comments coming out of the PRP survey...
Links mentioned in the podcast:
James Lind Alliance Top 10 PsA Priority Setting Project
Info on GRIPP2
Jana's earlier podcast on PsA HQ
If you would like to share your experience of research involvement from a patient or researcher perspective, or share a research opportunity or news please get in touch - send an email me at psazzgroup (at) gmail.com
My website and contacts can be found via one of my links here and I would love it if you follow me on your listening platform for news of more episodes!
Music by Yevhen Onoychenko from Pixabay
Welcome back to PsA HQ! I’m Mel Brooke and I am on a mission to break down the barriers that can put people off getting involved in research! In this episode I’m joined by patient expert partner and friend Russ Cowper. We catch up on his role with the Psoriasis Association and research projects he’s currently involved in. We discuss some of the insights coming out of the PRP survey and Russ shares a poem from a recent community based project in Manchester and a few of his funny research experiences with us so listen out for those!
Links mentioned in the podcast:
Psoriasis Association https://www.psoriasis-association.org.uk
Manchester ARC. https://arc-gm.nihr.ac.uk
Health Innovation Manchester https://healthinnovationmanchester.com
Manchester Memories e-book: https://arc-gm.nihr.ac.uk/projects/understanding-experiences-GM-covid-vaccination-programme
If you would like to share your experience of research involvement from a patient or researcher perspective, or share a research opportunity or news please get in touch - send an email me at psazzgroup (at) gmail.com
My website and contacts can be found via one of my links here and I would love it if you follow me on your listening platform for news of more episodes!
Music by Yevhen Onoychenko from Pixabay
Happy New Year and a Warm Welcome back to PsA HQ! I’m Mel Brooke and I am on a mission to support people with rheumatic diseases and break down the barriers that can put people off getting involved in rheumatology research! In this first episode of 2025 I want to give you a bit of an update from me mixed in with a bit of ai related fun ! Do have a listen in :-)
If you would like to share your experience of research involvement from a patient or researcher perspective, or share a research opportunity or news please get in touch - send an email me at psazzgroup (at) gmail.com
My website and contacts can be found via one of my links here and I would love it if you follow me on your listening platform for news of more episodes!
Music by Yevhen Onoychenko from Pixabay
Welcome back to PsA HQ! I’m Mel Brooke and I am on a mission to break down the barriers that can put people off getting involved in research! In this episode I talk to Clive McIntyre, a passionate volunteer and patient ambassador, to explore the transformative power of patient voices in research and healthcare. Clive shares his journey of living with rheumatoid arthritis and how it inspired him to advocate for better patient involvement in research and clinical practice. From discussing the challenges of ensuring diverse representation to the ripple effects of small contributions, Clive’s insights offer a compelling case for why every patient’s perspective matters.
If you would like to share your experience of research involvement from a patient or researcher perspective, or share a research opportunity or news please get in touch - send an email me at psazzgroup (at) gmail.com
My website and contacts can be found via one of my links here and I would love it if you follow me on your listening platform for news of more episodes!
Music by Yevhen Onoychenko from Pixabay
Welcome back to PsA HQ where we explore important topics in health, research, patient involvement and advocacy! I’m Mel Brooke and in this episode we are diving into the HIPPOCRATES Prospective Observational Study (HPOS for short) with guest Prof. Oliver FitzGerald, University College Dublin.
Psoriatic arthritis is a potentially debilitating condition, and the HPOS study aims to identify the factors that put certain individuals at risk. This work is essential not only for improving diagnosis and treatment but also for exploring ways to prevent PsA from developing altogether. We also have a candid discussion about the challenges of recruiting participants across Europe, how innovative online methods are making the study more accessible, and what it means to have patients at the heart of this research.
Useful Links:
We would also like to acknowledge the following members of the HPOS team:
-University of Oxford: Laura Coates (Principle Investigator), David Kerr and Timeo Mtenga.
-University College Dublin: Stephen Pennington, Colette O'Donnell and Teresa Grohmann.
-HIPPOCRATES PRP Heidi Bertheussen
- Natasha de Peyrecave (UCB and EFPIA lead)
If you would like to share your research projects, news, experience or research involvement experiences please get in touch to enquire - simply send an email me at psazzgroup@gmail.com
My website and contacts can all be found via one of my links here and I would love it if you follow me on your listening platform for news of more episodes!
Music by Yevhen Onoychenko from Pixabay
Welcome back to PsA HQ! I’m Mel Brooke and I am on a mission to break down the barriers that can put people off getting involved in research! In this episode I talk to Eugene, a Patient Research Partner and friend who shares his story around reasons for becoming a Patient Research Partner and why more men need to take part in research!
If you would like to share your experience of research involvement from a patient or researcher perspective, or share a research opportunity or news please get in touch - send an email me at psazzgroup@gmail.com
My website and contacts can be found via one of my links here and I would love it if you follow me on your listening platform for news of more episodes!
Music by Yevhen Onoychenko from Pixabay
Welcome back to PsA HQ! I’m Mel Brooke and I am on a mission to break down the barriers that can put people off getting involved in research! In this episode I talk to Karen, a Patient Research Partner who has volunteered to share her experience of working with research teams with us to help find ways to improve and evolve collaborations.
As mentioned at the end of the episode, I would really value it if you would take part in my survey to understand what experience and learning resources you have or would like to see available for PRPs. The link is PsA HQ PRP SURVEY
If you would like to share your experience of research involvement from a patient or researcher perspective, or share a research opportunity or news please get in touch - send an email me at psazzgroup@gmail.com
My website and contacts can be found via one of my links here and I would love it if you follow me on your listening platform for news of more episodes!
Music by Yevhen Onoychenko from Pixabay
Welcome back to PsA HQ! I’m Mel Brooke and I am on a mission to break down the barriers that can put people off getting involved in research!
This is the first PsA HQ video podcast and in this episode I talk with Dr William Tillett, a research active Rheumatology Consultant from the RNHRD, Bath about some shared experiences and thoughts around patient involvement. I want to get people intrigued about getting involved in research and taking up the opportunities that get put forward and Will is a great advocate for this too. We want to bust some myths around anyone needing to be 'specially qualified' to take part and how it’s the lived experience of people with rheumatic diseases that matter most. Will also talks candidly about how he got involved in Psoriatic Arthritis research and his passion for trying to help improve the lives of people living with rheumatic diseases.
I hope you enjoy this episode!
If you would like my free ‘Beginner's Guide to Patient Research Partners in the UK’ that will include links to some of the organisations mentioned in this podcast, send an email to psazzgroup@gmail.com
If you are listening and have a comment or view to share please contact me via one of my links here and follow me on your regular listening platform.
Music by Yevhen Onoychenko from Pixabay
Welcome back to PsA HQ! I’m Mel Brooke and I am on a mission to break down the barriers that can put people off getting involved in research! In this episode I walk you through a kind of ‘Beginners guide to Patient Research Partners’ - hopefully it will help you understand what they are, what they do and how to become one.
As mentioned at the end of the episode, I would really value it if you would take part in my survey to understand what learning resources you have used or would like to see available for PRPs. The link is PsA HQ PRP SURVEY
If you would like my free ‘Beginner's Guide to Patient Research Partners in the UK’ that includes links to some of the organisations I’ve mentioned in this podcast, send an email me at psazzgroup@gmail.com
If you are listening and have a comment or view to share please contact me via one of my links here and follow me on your listening platform.
Music by Yevhen Onoychenko from Pixabay
Welcome back to PsA HQ! I am on a mission to explain some simple science and smash the barriers that put people off taking part in research! In this episode I am taking a little recap on the last few episodes, talking about ‘Patient Outcomes’ and hopefully starting to help get you feeling more curious and perhaps a little more confident about taking part in research as a ‘Patient Research Partner’..
If you are listening and have a comment or view to share please contact me via one of my links here
Music by Yevhen Onoychenko from Pixabay
Welcome back to PsA HQ! I am on a mission to explain some simple science and smash the jargon barriers that put people off taking part in research. In the last few episodes, I’ve talked about atoms, molecules and chemical reactions and now we will begin to delve into how new drugs and treatments are explored and discovered. Join me for a new episode in this journey to improve the conversations in the patient /researcher rheumatology community and make it all more accessible.
If you are listening and have a comment or view to share please contact me via one of my links here
Music by Yevhen Onoychenko from Pixabay
Welcome back to PsA HQ for another new episode in our journey to break down some of the barriers to research involvement and engagement in the patient /researcher rheumatology community and make it all more accessible. In the last episode, I talked about atoms and molecules so we could begin to grasp some simple science relevant to research. Today, we’re looking at chemical reactions.. mixed in with a little bit of jargon busting!
If you are listening and have a comment or view to share please contact me via one of my links here
Music by Yevhen Onoychenko from Pixabay
Welcome back to PsA HQ for a new episode! I want to help break down some of the barriers to research involvement and engagement in our rheumatology community and make it more accessible. In the last episode, I talked about the world of rheumatology and how chemistry plays a vital role in understanding and managing our conditions. Today, we’re taking a closer look at the building blocks of matter: the atoms and molecules, and their significance in our bodies and medications.
If you are listening and have a comment or view to share please contact me via one of my links here
Music by Yevhen Onoychenko from Pixabay
What is rheumatology, and why does chemistry play a crucial role in it? In this episode of the PsA HQ podcast we are going to delve into the world of rheumatology and explore the scientific foundations that help us understand and manage rheumatic diseases.
if you are listening and have a comment or view to share please contact me via one of my links here
Music by Yevhen Onoychenko from Pixabay
Hey there - it's been a little while since I podcast and I've been thrashing out some ideas that I wanted to use for the channel for a while. I was going for a full re-brand at one point but hey, life's too short! So here's a short update while I get things ready...
If you already follow me thank you - if you don't please like and subscribe.. it would mean so much and help to get this channel listened to even more :-)
You can reach out to me by clicking here
Hello and welcome to another special podcast episode in this series about the ‘The James Lind Alliance Priority Setting Partnership for Psoriatic Arthritis’ - a project funded the British Psoriatic Arthritis Consortium (BritPACT) and was a collaboration with the British Society of Rheumatology (BSR), Psoriasis Association and the Psoriasis and Psoriatic Arthritis Alliance (PAPAA). In this episode I speak with Andy Kelly who is both a patient and someone working in a health care professional role. This dual perspective enabled Andy to see things from both sides - he tells us about his experience of being part of the steering committee and what he gained from doing so.
Here's those links I mentioned in the series:
Top 10 Priorities https://www.jla.nihr.ac.uk/priority-setting-partnerships/psoriatic-arthritis/psoriatic-arthritis-top-10-priorities.htm
James Lind Alliance - https://www.jla.nihr.ac.uk
BritPACT https://www.britpact.org/Impact#PSP
British Society for Rheumatology (BSR) https://www.rheumatology.org.uk
Psoriasis Association https://www.psoriasis-association.org.uk
Psoriasis and Psoriatic Arthritis Alliance (PAPAA) https://www.papaa.org
PsA HQ Linktree https://linktr.ee/PsA_HQ
Please subscribe, rate and bookmark this channel! There are lots of ways to get in touch - here's my link tree or you can send an email to: psazzgroup@gmail.com
Attribution: Music by lemonmusicstudio from Pixabay
Hello and welcome to another special podcast episode in this series about the ‘The James Lind Alliance Priority Setting Partnership for Psoriatic Arthritis’ - a project funded by the British Psoriatic Arthritis Consortium (BritPACT) and was a collaboration with the British Society of Rheumatology (BSR), Psoriasis Association and the Psoriasis and Psoriatic Arthritis Alliance (PAPAA). In this episode I speak with Russ Cowper, a patient partner on the steering committee for the PsP project. Russ talks to me about his own experiences with psoriatic arthritis and how and why he gets involved in research engagement.
Here's those links I mentioned in the series:
Top 10 Priorities https://www.jla.nihr.ac.uk/priority-setting-partnerships/psoriatic-arthritis/psoriatic-arthritis-top-10-priorities.htm
James Lind Alliance - https://www.jla.nihr.ac.uk
BritPACT https://www.britpact.org/Impact#PSP
British Society for Rheumatology (BSR) https://www.rheumatology.org.uk
Psoriasis Association https://www.psoriasis-association.org.uk
Psoriasis and Psoriatic Arthritis Alliance (PAPAA) https://www.papaa.org
PsA HQ Linktree https://linktr.ee/PsA_HQ
Please subscribe, rate and bookmark this channel! There are lots of ways to get in touch - here's my link tree or you can send an email to: psazzgroup@gmail.com
Attribution: Music by lemonmusicstudio from Pixabay
Hello and welcome to this special podcast research dissemination series about the ‘The James Lind Alliance Priority Setting Partnership for Psoriatic Arthritis’ - a project funded by the British Psoriatic Arthritis Consortium (BritPACT) and was a collaboration with the British Society of Rheumatology (BSR), Psoriasis Association and the Psoriasis and Psoriatic Arthritis Alliance (PAPAA). In this episode I speak with GP, Dr Espeth Wise to find out how and why she decied to get involved in the project and hear about her experience as a member of the steering committee.
Here's those links I mentioned in the series:
Top 10 Priorities https://www.jla.nihr.ac.uk/priority-setting-partnerships/psoriatic-arthritis/psoriatic-arthritis-top-10-priorities.htm
James Lind Alliance - https://www.jla.nihr.ac.uk
BritPACT https://www.britpact.org/Impact#PSP
British Society for Rheumatology (BSR) https://www.rheumatology.org.uk
Psoriasis Association https://www.psoriasis-association.org.uk
Psoriasis and Psoriatic Arthritis Alliance (PAPAA) https://www.papaa.org
PsA HQ Linktree https://linktr.ee/PsA_HQ
Please subscribe, rate and bookmark this channel! There are lots of ways to get in touch - here's my link tree or you can send an email to: psazzgroup@gmail.com
Attribution: Music by lemonmusicstudio from Pixabay