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Why Patient Stories Matter at Professional Conferences

Heading Text Why Patient Stories Matter at Professional Conferences

Synopsis

Don’t get me wrong, it is absolutely crucial that listening takes place in the clinical encounter. It is just a different type of listening. It is listening to understand that individual and their particular contexts. Who are they now? Who were they? Who do they want to be? How is pain affecting their lives? Their self? Their families? Their future? What do they make of their pain? What do they think the path forward could look like?

It is incredibly important to listen to a person’s story. Their pain is in their story – in their very being, their very lives – not in their hip, not in their back or neck or knee. It is never just a tissue problem. Tissues don’t feel pain, people do. With all their messy internal and external contexts, all their messy humanity.

The only way to help that person make sense of things is figure out what doesn’t make sense. And making sense is the way forward. When things make sense we can take action. We can be more involved in our own care. So listening within the clinical encounter is incredibly important.

Key Points

If you want to understand pain, it makes sense to learn from the people who live with it.

Our stories matter. Our stories are evidence. Our stories are data. Our stories, our insights, our perspectives can advance learning and understanding and research and practice.

And through reading systematic research of our stories, you can better understand those patients who come to you in the chaos, unable to give voice to their experience.

By understanding our stories, you can help your patients give voice to theirs.

“This isn’t just about listening to patient stories, it’s about learning from people with lived experience who have useful knowledge and insights and collaboration between researchers, healthcare professionals, and people living with pain in order to better understand, study, educate about, and treat/manage pain. “

-Joletta Belton

Research papers

Joletta Belton wrote this blog (read the full blog here). But there is more to read read on this.

Here is a recent BMJ blog post on what patient partnerships in clinical care looks like: Community initiative co-led with patients could improve care for people with complex health and social needs

A sample of resources researchers can use to address their concerns and authentically engage patients as partners in research: Patients as Partners in Research: There Is Plenty of Help for Researchers

 

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Patients as Partners in Research: It’s the Right Thing to Do

Patients as Partners in Research: It's the Right Thing to Do

Synopsis

The health research landscape is changing, and it is time for the Journal of Orthopaedic & Sports Physical Therapy (JOSPT) community to foster authentic opportunities for patient engagement in musculoskeletal research and practice. Although authentic engagement has challenges, the benefits are well worth the investment of time and energy to overcome these challenges and improve the quality of physical therapy research. In this editorial, the authors outline 3 steps JOSPT is taking to promote and support patient partnership in musculoskeletal research.

J Orthop Sports Phys Ther 2019;49(9):623-626. doi:10.2519/jospt.2019.0106

The Key Point

“It is our lives that are at stake, after all. Shouldn’t we have a say? It is we who have to live with these conditions and experiences for which we are seeking care. We seek care because we cannot figure it out on our own. We need your expertise, your knowledge of the research, your clinical expertise. We also need for you to bring your own humanity to the table. To see us as fellow humans who are trying to make sense of things and find a way forward. That we will not be in your care forever. That even while we are in your care, we are largely living with these experiences and conditions on our own. You are in the best position to help us find that way forward with us. It can only be discovered together.”

Joletta Belton

Get to the paper here

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Shut Up and Listen! A Patient Takeover

Shut up and listen! A patient takeover

About this event

Well this is a first for Le Pub, a patient takeover!

This Le Pub is being taken over by Joletta Belton and Keith Meldrum, both well known patient voices in the pain world.

One of our goals at Le Pub is to bring together researchers, clinicians, AND people who live with pain. We strive to give people experiencing pain direct access to the science that informs their treatment. This time we’re flipping it on its head and bringing scientists and clinicians to hear the patients’ perspective.

You’ve shut up and listened, now what?

Join Keith and Jo for a conversation about where we go from here in the evolution of pain care, with perspectives from those living with pain and the clinicians who are leading the way in meaningful patient partnerships.

Joletta and Keith will share their experiences and discuss how this has informed their knowledge, thoughts, opinions, and recommendations on the future of care for people experiencing pain.

Joletta and Keith will be joined by regular Le Pub panellist, Kat (@tmopain)another strong patient voice and Diarmuid Denneny, who will be known to many of you through his role as chair off the Physiotherapy Pain Association

This promises to be a really lively discussion and debate and we’re super excited to see where Joletta, Keith, Kat and Diarmuid take us.

World Event Times

London – Friday, 27 November 2020, 20:00:00 GMT

Amsterdam – Friday, 27 November 2020, 21:00:00 CET

New York – Friday, 27 November 2020, 15:00:00 EST

Adelaide – Saturday, 28 November 2020, 06:30:00 ACDT

Jo

Jo makes sense of pain through science and stories on her blog, MyCuppaJo.com, and is an advocate for integrating the lived experience of pain into the study, education, and treatment of pain. She is co-chair of the IASP Global Alliance of Pain Patient Advocates presidential task force and the first Patient & Public Partnerships Editor at JOSPT.

Kat

Kat is learning to live well with persistent neuropathic pain. After her first diagnosis of a “chronic, progressive” pain disorder, she learned to meditate and somewhat navigate the healthcare system. After receiving her second, she began discovering pain science and is finding strength in (mostly gentle) movement. She has a special interest in the ways we communicate about pain. A thoughtful presenter and engaging public speaker, Kat interprets the lived experience of persistent pain for clinicians and researchers world-wide.”

Diarmuid

Diarmuid is professional lead physiotherapist at the Pain Management Centre (PMC), University College London Hospitals NHS Foundation Trust in the UK. Clinically he is an advanced practitioner physiotherapist and independent prescriber.

He is chair of the Physiotherapy Pain Association, a Professional Network linked to the Chartered Society of Physiotherapy.

Diarmuid has a particular interest in psychologically informed practice, co-production methods, and the role for health care professionals in supporting people who have pain and medication related issues. He has published peer reviewed articles relating to pain and physiotherapy practice.

Diarmuid is a member of the guideline development committee for the NICE chronic pain guidelines. He is a module lead (Strategies for the Self-Management of Pain) for the new UCL MSC in Pain Management. He also has interests in the non-medical management of CRPS and is a committee member of CRPS UK.

Check out more upcoming events – http://www.lepubscientifique.com

Cancellation Terms

Places can be cancelled and refunded up to 48 hours before the start of the event. Within 48 hours of start time no refund.

Recordings

Please note that Le Pub Home Brew is a LIVE EVENT. We are looking at options for giving access to recordings in the future, but right now, we are doing what we are best at – bringing you awesome live and interactive learning events!