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Why Do We Fear Co-Producing Health with Patients?

Why Do We Fear Co-Producing Health with Patients?e


This blog is posted on the website of the Institute for Healthcare Improvement on November 12th, 2020:

Helen was a nurse who believed her role was to help make things better. Wherever there was a problem, she was determined to help “fix it.” When Helen started working as a nurse in the community, she realized she was no longer “protected” by the status conferred by the uniform she had worn in the hospital setting. She was now in her regular clothes, a guest in someone’s home. This shift in the power dynamics initially made her feel vulnerable. Helen wondered if people felt this way when they were in the hospital.

In health care, outcomes are not created by health care professionals on their own. Health outcomes are co-produced with patients. As leaders and clinicians, we bring a wealth of “learned experience” to the table when working on quality improvement (QI), but it isn’t enough if people with relevant “lived experience” aren’t included as equal partners. Only by partnering with patients can we understand the whole story and see what matters. Only then can we co-design and co-produce improvements together.

During her physiotherapist/physical therapist training, Aimee was taught that her role was to be the “expert” when working with patients. Meeting Bob challenged this view. Aimee was responsible for talking with Bob about whether he was ready for a knee replacement. Practicing shared decision making, Bob and Aimee co-produced a plan that included not only talking about his knee and the surgery, but also how to address his needs as a whole person to optimize his experience and outcomes.

Clinicians are not often taught to co-produce care. Instead, we often struggle with feeling out of our comfort zones. Instead of asking people what matters and improving with them, with the best of intentions we presume to know what is best and improve for them. In her book Dare to Lead, researcher and thought leader on vulnerability, Brené Brown, describes the situation this way:

When something goes wrong, individuals and teams are rushing into ineffective or unsustainable solutions rather than staying with problem identification and solving. When we fix the wrong thing for the wrong reason, the same problems continue to surface. It’s costly and demoralizing.


Key Points

The literature (see the list below) highlights many benefits of co-producing quality improvement:

  • Creates a sense of urgency among staff and connects them to their core purpose
  • Results in often simple and low-cost change ideas
  • Co-produced improvement projects are set up for success, ensuring ideas are robust and based on quality and practical experience

Read more

You can read the full post here

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Community initiative co-led with patients could improve care for people with complex health and social needs

Community initiative co-led with patients could improve care for people with complex health and social needs


Feb 28, 2020 – BMJOpinion. Canadian family physician Antoine Boivin and patient partner Ghislaine Rouly describe how they work together with community partners to provide holistic care for patients with challenging social and medical problems

The physician’s perspective

As a physician working in a primary care group practice of 12 000 patients, in a disadvantaged neighborhood of Montreal (Canada), I have often had the feeling of being the “right answer to the wrong problem.” Many of my patients present with medical symptoms (depression, chronic pain, fatigue and anxiety) that are exacerbated by underlying social problems (isolation, poverty, divorce, bereavement, stress, violence or work difficulties). I can sometimes refer those patients to a social worker or psychotherapist, but for many, this is met with suspicion (“You mean it’s in my head?”), resistance (“I’ve seen a shrink before and it didn’t help”) or practical barriers (“I don’t have the money”). Most of all, I feel that health professionals are a poor substitute for a caring friend, family member, or neighbour. It was keen awareness of these issues that prompted me to approach Ghislaine, a much trusted and valued patient partner at our University of Montreal partnership programme, to adopt a new way of caring for patients together. [1] Her extensive knowledge as a patient and caregiver, her ability to listen without judgement, her humility and her diplomatic skills gave me confidence that working together we could deliver what I could not do alone. 

The patients perspective

Ghislaine Rouly—the patients perspective

I have been a patient all my life as I was born with two genetic diseases, and have subsequently had three major cancers, for which I have experienced months in an induced coma. As a result I live with chronic pain. I have also lost a daughter following the early diagnosis of an incurable disease. Despite all this, I have found that you can lead a good life if you are determined to do so. For me, helping other patients has always been a natural thing to do. For over 45 years, I have provided peer-support to other patients, accompanying them on their healthcare journey until their end of life. My experience has taught me a lot about the importance of being treated with humanity; and how this is especially important for those who are isolated, alone, depressed, and sick. In the past decade, I have trained health professionals in medical ethics, health communication, and collaboration, based on my lived experience as a patient. 

Four years ago I joined Antoine’s practice as a patient partner, working three days a week with him on a salaried position to care for patients together. We co-designed and co-lead the Caring Community project where patients, professionals and citizens work as partners to bridge medical and social care for people with complex conditions in the community. I was touched by Antoine’s humanity, humility, and concern for his patients. It was clear from the outset that we shared common values and a dream of caring for patients differently, drawing on our complementary skills.

Key learning and next steps

Ghislaine: At the beginning of the project, professionals were telling me that as long as I was here, everything would be fine: but how can we clone you? There is no need for that. There are many patients with great experiential knowledge and engaged citizens with deep knowledge of their community.  It is natural and instinctive that people help each other. We have identified such patients and citizen partners in the past year to join our project: we bring them together, support them, and build a team. 

Antoine: This project has reminded me that healthcare, in its essence, is about building caring relationships and seeing patients as people with knowledge, skills and life projects. I have learned that it is feasible to integrate patients and citizens as members of the team. However, this requires time, patience, and sensitivity to professional resistance and fears. It is possible to build a two-way bridge between the health system and communities. However, keeping a project like this alive is a tough balancing act. Currently, the most pressing questions in front of us are:

  1. How to build Caring Communities with patients and citizens in a way that is equitable and inclusive, ensuring that we mobilize a diversity of patients, clinicians and citizens who recognize the specific knowledge of everyone involved, and work toward a common goal?
  2. How to fund, lead and implement Caring Communities with health and community organisations in a way that is adaptable, sustainable and scalable to other contexts?
  3. How to rigorously assess the impacts of caring with patients and communities on health and social outcomes? What are the main risks, costs and pitfalls? At this stage, individual cases can help us build an intervention theory and hypothesis. Our next research focus will be to strengthen impact evaluation with more robust designs. 

For me, the most important take home message from this initiative so far is that caring with patients and citizens is feasible, enjoyable, natural, and helps refocus care on what matters most to people.


The full article is here

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Empowered Relief: Improving access to interventions for pain relief and opioid reduction

About the event

Interested in opioid usage reduction? Then it doesn’t get much better than this!

We are SO excited to welcome, Stanford pain scientist, evidence-based psychologist, author and chronic pain suffer, Dr Beth Darnall to talk about the importance of patient-centered opioid prescribing and deprescribing. She will be looking at

  • The recent statistics around chronic pain and opioids.
  • A low or no-risk alternative to opioids.
  • The role of psychology in chronic pain.
  • The role of emotions in pain.
  • Why opioids are not a long-term strategy for pain.
  • Integrated strategies for pain-relief.

Beth will share insights into her published work as well as her ‘in-progress’ science on brief, digital, and home-based treatments for pain and opioid reduction.

This is going to be an incredible Le Pub Homebrew!

World Event Times

London – Wednesday 20 January 2021, 20:00:00 GMT

Amsterdam – Wednesday 20 January 2021, 21:00:00 CET

New York – Wednesday 20 January 2021, 15:00:00 EST

Adelaide – Thursday 21 January 2021, 06:30:00 ACDT

Beth Darnall, PhD

Beth Darnall, PhD, is a Stanford pain scientist, international speaker, evidence-based psychologist, and author.

Dr. Beth Darnall, PhD

Beth Darnall is Clinical Associate Professor in the Division of Pain Medicine at Stanford University. A pain psychologist, she has treated patients with chronic pain for 15 years. She serves on the boards of directors for several national pain organizations, editorial boards, is a section editor for Pain Medicine, and served as the 2012 President of the Pain Society of Oregon.

Her research — conducted mainly on women with chronic pain — includes investigations of pain catastrophizing and its impact on neural functioning, the immune system, and sensory perception. She is focused on broadening access to low-cost, high-quality pain psychology treatments. She is currently studying how optimizing psychology prior to breast cancer surgery may improve pain and recovery in women.

She serves as the primary investigator on more than $5 million in NIH funding. She is currently investigating mechanisms of catastrophizing and the single-session catastrophizing treatment she developed.

She is Co-Chair of the American Academy of Pain Medicine’s Task Force on Pain Psychology, and in 2015 received a Presidential Commendation from the American Academy of Pain Medicine.

Her main passion is empowering people with chronic pain to harness the power of their mind-body connection to reduce symptoms and optimize health. She is author of Less Pain, Fewer Pills: Avoid the Dangers of Prescription Opioids and Gain Control Over Chronic Pain © 2014 and The Opioid-Free Pain Relief Kit © 2016.

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.


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!

Get your ticket HERE

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A way Forward and No Going Back


This conversation video with Pete Moore and well known Le Pubbers Kat Gloor, Joletta Belton and Sandy Hilton share thoughts on how the healthcare system is a barrier for access high value care. Very well summarized from multiple perspectives. 

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Why is Pain Painful?

Why is Pain Painful

This is not an easy questions but we love to philosophy. Laura Rathbone – one of our team members sharing her thoughts.
Pain is painful because it is pain. Painful feelings are painful because they are full of the experience of pain. Seems tautological to me because pain is simply the language we’ve decided to give something we experience and mutually agree upon.
I don’t think one can reasonably make any argument that doesn’t include an evolutionary perspective on the merit of feeling some sort of unpleasant experience tied to an increased likelihood of danger wether it be physical or psychological
Pain is pain because evolution has deemed it quite helpful…otherwise we likely wouldn’t be here and we wouldn’t see nocifensive behavior across just about every other living creature.
What pain (that word we ascribe that somewhat mutually defined experience to) means to each person is of course different…and in part I firmly believe that is mainly due to environmental/lifestyle, psychological, and sociological evolutions in humans that have far outpaced physical evolution
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Find out when exercise will help or hinder when you’re experiencing pain

Find out when exercise will help or hinder when you're experiencing pain

About this event

Exercise is a recommended treatment for those with chronic pain. However, individuals with chronic pain have significant pain during activity that can interfere with exercise treatments. We will discuss the underlying neurobiology for how physical activity increases and decreases pain, the clinical implications of these findings, and how treatment with TENS can reduce movement-evoked pain.

World Event Times

London, Thursday, 18 February 2021, 20:00:00 GMT

Amsterdam, Thursday, 18 February 2021, 21:00:00 CET

New York, Thursday, 18 February 2021, 15:00:00 EST

Kathleen A. Sluka, PT, PhD, FAPTA

Professor of Physical Therapy and Rehabilitation Science

Dr. Sluka’s laboratory studies the peripheral and central mechanisms of chronic musculoskeletal pain, and non-pharmacological treatment for chronic pain. These studies involve the use of animal models of muscle pain developed and characterized in Dr. Sluka’s laboratory, as well as projects in human subjects. We use a variety of techniques to address these questions including cell culture, molecular biology, genetic manipulations, behavioral pharmacology, and standard clinical trial methodology. Our overall goals are to improve the management of pain for people with a variety of musculoskeletal pain conditions by discovering the underlying mechanisms that lead to the development of chronic pain, discovering new therapies for pain management, and improving the use of currently available treatment for pain.

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.


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!

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Acknowledgement of patient partners in patient-oriented research

patient-oriented research

Acknowledgement of patient partners in patient-oriented research


Teams that carry out patient-oriented research projects will require different preparation to empower all team members (researchers and patient partners) to discuss authorship and acknowledgement. To facilitate these conversations, the authors have included an overview of the scientific publishing process, explanation of some common terms, and sets of considerations are provided for both patient partners and researchers in determining the range of team member contribution from acknowledgement to authorship. Conversations about authorship can be difficult, even for established research teams.

The authors providing a comprehensive guidance for making these conversations easier and more thoughtfull

Key Points

  1. Provide information on the steps and timeline to publish a paper in an academic journal;

  2. Review existing recommendations of authorship and acknowledgement and their application within the patient-oriented research context to facilitate decision-making about patient partner authorship and acknowledgement;

  3. Discuss related considerations for patient partners and researchers in patient-oriented research; and,

  4. Offer practical advice based on experience of Network members whose research projects have included patient partners as authors.

Research papers and resources

You can get access to the full text (here)

Gemma Pearce has a YouTube video on Co-creation: Dr Gemma Pearce’s talk on Co-Creating Welfare which talks about the project called: Co-Creating Welfare

Have a look below.


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Why Patient Stories Matter at Professional Conferences

Heading Text Why Patient Stories Matter at Professional Conferences


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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Pain, hyperalgesia and activity in nociceptive C units in humans

Pain, hyperalgesia and activity in nociceptive C units in humans


Check out this great bit of work by LaMotte et al from 1992.
Here’s some simple reflections of the science:
– First they’re exploring activity of nociceptors in humans. That means someone volunteered for this!
– They use a crude way of ‘finding’ C-mechanoheat nociceptive units (CMHs) – scrape the skin or pinch it between the fingers
– It is only classified as a C-fibre if the conduction velocity is less than 2 m/s
– It is only classified as mechanoheat nociceptor if it selectively responds to technical or heat stimuli which typically cause pain
– They carefully map the receptive field
– Then they inject capsaicin i.e. the active component of chili peppers
– Interestingly, they tried to limit the numerical rating scale of pain to sensation only (is it possible to separate yourself from the unpleasantness or tolerability?)
What did they find?
– Heat and pain threshold reduced after injecting capsaicin. Now temperatures as low as 30C were felt as painful!
– Cooling the skin reduced pain and the spontaneous firing of the CMHs
– Warming increased this again!
– There was evidence of mechanical hyperalgesia i.e. increased pain to mechanical stimuli
– Some of this was outside of the skin zone affected by the injection i.e. ‘secondary hyperalgesia’
– There was evidence of analgesia around the injection site too
A simple summary:
– Ask a bunch of crazy people if it’s ok to inject some chili into them
– Scrape, pinch, electrically stimulate, heat and cool them whilst asking if it hurts
– Find that the injection makes these things simultaneously hurt more or less depending on where you do it
– Then discover something totally cool but keep in under wraps
Here’s the cool discovery – hang in there!
“A few presumably chemosensitive C units were discovered serendipitously during studies of CMH units….” In other words, it looks like these researchers were (?) the first to discover sleeping or silent nociceptors in humans. BOOM
It’s worth hearing their summary and considering some of the current proposed models to understand pain with.
“An interesting question is why pain from intradermal injection of [capsaicin] is so intense….One possible explanation might be that the discharge pattern in C polymodal nociceptors on capsaicin injection is irregular, with bursts of impulses …. It is conceivable that such high instantaneous firing rates during bursts of impulses could give rise to considerable pain due to temporal summation….It is also possible that several types of nociceptors are activated by capsaicin. Candidate nociceptors in addition to the CMHs could include purely chemosensitive units as well as the heat nociceptors that respond both to noxious heat and to capsaicin but not to mechanical or cold stimuli.”

Research papers

You can access Lemotte’ paper here

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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


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