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:

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

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

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

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

If you are listening and have a comment or view to share

Music by ⁠⁠⁠⁠Yevhen

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

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