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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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Dr. Melissa Farmer at Le Pub Home Brew

Why should you listen to me? Why do I think I have all the answers? I base my confidence on seven (looooong) years of graduate training at McGill University, which is renowned for the pain research program founded by the pain pioneer Ron Melzack. It is a rich multidisciplinary environment where basic scientists attend clinical rounds, where clinicians combine adventurous creativity with pain-mechanism based approaches, and where I developed mouse models of chronic pain based on my patient observations in the clinic. And as a clinical psychology trainee in a multidisciplinary chronic pain clinic, I have been exposed to a wide spectrum of pain populations and bizarre symptom presentations that no longer phase me.

Painless complex regional pain syndrome, anyone? I’ve seen it.

I have embraced many opportunities to listen to people smarter than myself discuss pain mechanisms: graduate courses on acute and chronic pain physiology, lectures by major figures in pain research, drunken conversations at rowdy IASP parties. And as a postdoc, I trained with a brilliant pain neuroimager whose science is 5+ years ahead of the field. So I know some things about pain.

Dr. Farmer is a Research Assistant Professor in the Physiology Department of the Northwestern University Feinberg School of Medicine in Chicago.

Melissa Farmer, a clinician-scientist with roots in sexology, pain research, and neuroscience who is based in Northwestern University’s Feinberg School of Medicine in the Department of Physiology, as a Research Assistant Professor. Her doctorate in Clinical Psychology was obtained from McGill University, where she pursued human and animal research related to chronic pain. She specialises in translational research approaches, including cross-species analysis of cognition, emotion, and pain perception across multiple levels of analysis (cellular, systems, behaviour, animal model development, psychophysiology, clinical psychological assessment/treatment, multimodal neuroimaging).

Dr. Farmer’s current interests include:

  • Deciphering mechanisms underlying complex pelvic pain;
  • Fear memory formation/reconsolidation of visceral pain; and
  • Development of pain neuroscience education for non-scientists.

Meet Melissa in the video below:

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Psychologically informed therapy

Psychologically Informed Therapy


Psychologically informed therapy utilizing ACT (Acceptance and Commitment Therapy)

is the new frontier in working with people with persistent pain. Many non-psychologist clinicians find it hard to get started in this area. It can feel closed off and exclusive.

Bronnie Lennox Thompson has joined us at Le Pub Scientifique, as she has guided us through some ideas and strategies she uses to help people live well with pain.

  • What patient centred care really means
  • Reframing people’s expectations of pain
  • Core ACT skills
  • How to confidently enable your patients to live well with pain

Soft skills are bloody hard

Bronnie Lennox Thompson


Research papers

Evidence for psychological treatments in chronic pain. A few papers that Bronnie mentioned

Williams et al. (2020) Cochrane Database of Systematic Reviews
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Relive: Tasha Stanton

I. Am. Stanton
I. Am. Stanton

Tasha Stanton – I Am Stanton! Adventures in Pain, Perception and Science

Tasha Stanton

When Lorimer Moseley recommends someone by saying they are quite simply ‘an excellent person, great communicator and fantastic research leader’ as he did when he introduced us to Tasha Stanton, we knew we were in for quite a night!


A/Prof Tasha Stanton’s life and work in science has truly been an adventure, we don’t use that word without good reason! Tasha’s award-winning research is focussed on understanding the deep complexity of why people hurt and why, sometimes, pain doesn’t go away. In order to do this Tasha’s work has taken her to the frontiers of perception, using technology such as virtual and mediated reality to fundamentally alter peoples’ perception of their body and their experience of pain.

Key Points

  • A lot of our senses have homeostatic functions, their role is to try to keep balance within us and promote us to undertake different behaviours to help us retore balance. If you feel cold, the feeling of cold has this homeostatic function to make us seek warmth
  • Sensory information; sound, vision, touch influence our perception and our bodily feelings like pain and stiffness.
  • Stiffness protects us from movement that might be damaging or that we believe might be damaging.
  • Sensory cues can change pain. When we manipulate sensory input, there can be a significant reduction in pain and stiffness. The sound of a creaky gate can increase stiffness. The more it is repeated the larger the effect. We also see the opposite, when the noise decreases the pain and stiffness reduces.
  • If bodily feelings aren’t just a ‘read out’ of the peripheral information that’s coming in then we need to rethink what those bodily functions (stiffness, pain) are for.
  • We have innate processes between vision and pain. Using illusion to change the size of body parts, you can manipulate pain and swelling.
  • Not only are our bodily experiences shaped by sensory cues, but we are actually altering physiological regulation of the body.
  • We have a dynamic system that adapts and updates based upon the available information, for that person, in that environment, in that society.
  • Clinicians- are we adding safety or danger to our sessions? Many of our treatments are targeting fear.

And there are some keypoints for patients too:

  • The assumption that bodily functions like pain and stiffness solely reflect the biological state of the tissues doesn’t hold up. Many people have enormous amounts of pain and no damage or people have scans which show a great deal of damage but virtually no pain.
  • We have unique experiences of the world.
  • Your beliefs shape what you see.
  • Its key to approach each clinical encounter with the primary aim of listening…ask questions without assumptions. Do not make quick judgements.
  • Many people underestimate how challenging it is to have pain that doesn’t go away.
  • Visual cues in general can have large influence on what people experience. Scary scan pictures.
  • We have a need for experimental lab research because we need to better understand how our treatments work or don’t work.
  • We can use perceptual alterations to promote discussion about biological process that underlie our bodily feelings like pain
  • New theories are needed to underlie and underpin new treatments. To make progress we have to do the background work to understand how treatment mechanisms work .

Research papers

“Does feeling back stiffness actually reflect having a stiff back?”

This (free to access) paper by Tasha Stanton demonstrates what a superstar of the pain world she is.

Feeling stiffness in the back: a protective perceptual inference in chronic back pain

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The Rollercoaster of Professional Life – still evolving

By David Butler,  November 22, 2016

I wrote the first version of this over 3 years ago and I still get contacted by health professionals who want to discuss their similar rollercoaster journeys. Here’s an update on my ever-evolving roller coaster.


The first wave

When I emerged proudly with my degree in the late 70s, all packed with Maitland style manual therapy, I was convinced I could fix all and sundry and I often opened a clinical conversation with “what can I fix today?” (I feel ill saying it now!) Anyway, it all worked well for a few years but then I noticed that “it” was not delivering the goods so well. Unbelievably some patients dared not get better. Things were feeling professionally grim, career changes were pondered, but then, proud and erect, fresh from New Zealand, Robin McKenzie rode into town, maybe even on a white horse!

The second wave 

Wow – this was it! How silly was I to miss the disc and the novel notion of actually getting people to treat themselves and to give your thumbs a good rest. People started getting better again, my practice was full of lumbar rolls, the “Treat your Own” books and models of discs and I was on a roll too. This McKenzie approach worked wonders for a few years, but then the outcomes began to taper off, some patients wouldn’t improve, some wanted the old fashioned hands on that I had almost given away and a now familiar professional grimness emerged again. What next?

The third wave

I heard about a year-long Maitland post graduate course in South Australia and I reasoned that there must be more to it than I’d first thought, so I signed up for the year. I made it through a bit wounded, but the old “I can fix anything” returned and I went into the outer suburbs of Adelaide to ply my trade, wriggling and cracking joints and doing the new teasing nerves stuff. People got better and complex problems seemed to dissolve. But would you believe it – it happened again – the clinical outcomes tailed off with what I now recognise as centrally sensitised states, overuse syndrome and complex regional pain syndrome. I pondered a career change. Perhaps professional surfing?

The fourth wave

By now (late 80s, early 90s) I was becoming a bit older and wiser and trying to think more deeply about things – so I thought –“stuff the others – I’ll try and work it out myself”. And so I went off on the “neural tension” bandwagon – the idea of the physical health of the nervous system and mobilising nerves. I did some reading, had a few thoughts, stood on the shoulders of a few others and even wrote a couple of books. This was it I thought! Life will be easy from now on as we wriggled and glided and teased nerves from head to toe. Patients flocked in … but the old diminishing outcomes emerged again, even for something I had helped to invent. Grim days – coffee was coming into fashion I pondered becoming a barista and investigated what it would take to become a marriage celebrant.

The fifth mini-wave

I was getting very wary now – the early work of Vladamir Janda was being updated and researched, particularly at the University of Queensland and once obscure bits of anatomy such as transversus abdominis, obturator internus and short neck flexors were now the new targets and the “with it” practitioners had ultrasound machine to view muscles. I went to the courses and gave it a go but my heart wasn’t in it. Waves can be exhausting, and the outcomes were eluding me again, just like my transversus abdominis. I tried the taping stuff too, but like a focus on a single muscle, it just didn’t make enough sense.

I drifted off into the world of pain and neuroscience and am still happily here. No magic, just a lot of hard work using neuroscience to fuel educational and imagery therapy and the good parts of the historic waves I’ve ridden. I thought I may have reached nirvana with the brain, but now I realise that neurones are only 10% of the brain and as the rest is immune cells, so there is long way to go.

I am still on this fifth mini-wave – trying to keep up with the world of brain plasticity, neuroimmunological balances and recent research and concepts of DAMPS (danger associated molecular patterns) and BAMPS (behaviour associated molecular patterns) and even CAMPS (cognitive associate molecular patterns) among others, all identified by Toll Like Receptors which can ratchet up their behaviour and keep enhances immune responses bubbling. It’s infectious science.  But …

Uh oh – a sixth mini-wave beckons

I never thought this would happen, but I peering back at the tissues where I started all those years ago. The brain is so trendy that the scientific and some of the clinical world seemed to forget the rest of the body. I have been trimming my nails in anticipation of a return to the flesh! Not giving up the neuroimmunology of course but things like how can we dance with the different receptors in tissues, deal with the immunocompetence of the meninges, or indeed most tissues, and the simple and undervalued licence to touch is sacrosanct – even if just touching a hand while sharing knowledge. I notice and try and understand the trend towards predictive processing and Bayesian thinking, and find it fascinating but I am a wary old bugger. After all – all the talk was about phenomenology a year or so back but it seems to have gone out of favour. Are some of our colleagues onto their next mini waves

Three thoughts

1. I look around now at the course advertisements in the back of the journals and it seems the new roller coaster is still driven by dry needling, loading joints and lifting weights, someone called Pilates, and now mindfulness has become trendy – even yoga is on the up. No doubt some people are flying with it, and good on them, but not me – I am too war weary to get on the roller coaster again but I am sure there is something in it like there is in everything and if your professional paradigms are wide enough and trending towards biopsychosocial then there is a rational place for everything. The waves are not a loss if you can absorb them.

2. What bugs me is that it took so long to realise that it was I myself who was probably the main variable in outcomes – not the techniques. I am not saying that massaging patients with a wet salmon will help. However the interactional power needs better analysis and understanding and as Pat Wall would say “in the end, if the majority of the outcomes are based on placebo, do not fear, but work out what it was in the placebo which gave the outcome”.

3. But what saddens me is that I now see a rapid and enforced rollercoaster in young therapists just out of college – youngsters with that precious, must be captured mindset of wanting to change the world. Yet increasingly employment is all about the dollar, the speed, the getting patients back and thus treatment processes inevitably based on singular biomedial paradigms. There is no time to work out for themselves what this professional rollercoaster of life is all about. We all need to work it out ourselves in some way. If not – we face professional burnout. I am looking forward to wave 7 soon!

– David Butler

Original post is published on NOIJAM.COM