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PsA HQ Podcasts

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This podcast has
35 episodes
Language
English
Publisher
Mel
Explicit
No
Date created
2020/11/05
Latest episode
2025/05/23
Average duration
20 min.
Release period
25 days

Description

Welcome to PsA HQ! I'm your host Mel, and I'm passionate about fostering peer support within the Psoriatic Arthritis, Psoriasis and broader autoimmune and inflammatory conditions community. This channel is a space for sharing experiences and I believe in the power of open, inclusive dialogue and the transformative impact of knowledge sharing. Join me in bridging the communication gap and creating an inclusive and impactful research landscape. Remember, all opinions are our own or those of our guests. Always seek proper medical advice. Thank you for listening - let's learn and grow together!

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Check latest episodes from PsA HQ Podcasts podcast


Who gets involved in rheumatology.. Part 2
2025/05/23
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
Who Gets Involved in Rheumatology Research—and Who Gets Left Out?
2025/04/18
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
Patient Research Partner Survey Insights with Jana
2025/03/27
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: NICE website 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
Patient Involvement: a catch up with Russ Cowper
2025/02/20
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
New Year update, AI ...and could I be out of a job as a podcaster?!
2025/01/17
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
Patient Involvement: Every voice matters - with Clive McIntyre
2024/12/23
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
Unlocking Psoriatic Arthritis: Inside the Groundbreaking HPOS Study
2024/12/03
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: PsA Hq website  HPOS News article HPOS Study Link 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 ⁠⁠⁠[email protected]⁠⁠⁠ 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
Patient Research Partner Motivation with Eugene
2024/11/22
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 ⁠⁠[email protected]⁠⁠ 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
Patient Research Partner Experience Sharing with Karen
2024/11/06
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 ⁠[email protected]⁠ 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
Mythbusting Patient Involvement with Dr Will Tillett
2024/09/20
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 ⁠[email protected]⁠   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
A Beginner's Guide to Patient Research Partners
2024/08/21
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 [email protected]   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
Recap and the Future of Rheumatology Treatments!
2024/07/06
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
Unravelling Rheumatology: How are drugs discovered?
2024/06/29
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
Unravelling Rheumatology: Chemical Reactions for beginners!
2024/06/21
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
Unravelling Rheumatology: Let's talk about Atoms and Molecules!
2024/06/15
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

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