Speaker: Joletta Belton

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Implementing models of care for musculoskeletal conditions in health systems to support value-based care

Implementing models of care for musculoskeletal conditions in health systems to support value-based care

Synopsis

Recognition is growing that to create patient‐centred care, health‐care organizations need to more directly engage patients across the spectrum of health‐care design and quality improvement. We highlight two papers that emphasize the necessity of implementing models and frameworks for research and  the clinical setting. From: Abstract

Models of Care (MoCs), and their local Models of Service Delivery, for people with musculoskeletal conditions are becoming an acceptable way of supporting effective implementation of value-based care. MoCs can support the quadruple aim of value-based care through providing people with musculoskeletal disease improved access to health services, better health outcomes and satisfactory experience of their healthcare; ensure the health professionals involved are experiencing satisfaction in delivering such care and health system resources are better utilised. Implementation of MoCs is relevant at the levels of clinical practice (micro), service delivery organisations (meso) and health system (macro) levels. The development, implementation and evaluation of MoCs has evolved over the last decade to more purposively engage people with lived experience of their condition, to operationalise the Chronic Care Model and to employ innovative solutions. This paper explores how MoCs have evolved and are supporting the delivery of value-based care in health systems..

From: Abstract

Key Points

This study demonstrated the feasibility and benefits of including a roughly equal number of patients and clinical providers/staff in design events and ensuring that the patients represent diverse perspectives.

The evidence is clear that the development, implementation and evaluation of MoCs must rely more on the involvement of those with the lived experience. Their involvement must be in collaboration with those who provide care, their managers and funders.

Research papers

 
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What can patients contribute and why it is needed?

What can patients contribute and why it is needed?

Synopsis

If patient-oriented research is intended to focus on priorities that are important to patients and produce information that is truly taken up and used to improve health care practice, therapies and policies, a strong foundation for ensuring successful collaboration must be laid.

The Canadian vision:

“Patients are active partners in health research that will lead to improved health outcomes and an enhanced health care system.”

Key Points

Patients bring the perspective as “experts” from their unique experience and knowledge gained through living with a condition or illness, as well as their experiences with treatments and the health care system. Involvement of patients in research increases its quality and, as health care providers utilize research evidence in their practice, increases the quality of care. “Engaging patients in health care research makes (investments in) research more accountable and transparent, provides new insights that could lead to innovative discoveries, and ensures that research is relevant to patients concerns. The international experience with engaging citizens and patients in research has shown that involving them early in the design of studies, ideally as early as at the planning stage, leads to better results.”Footnote 1 By encouraging a diversity of patients to tell their stories, new themes may emerge to guide research. Patients gain many benefits through their involvement including increased confidence and master new skills, access to information they can understand and use, and a feeling of accomplishment from contributing to research relevant to their needs.

Read more about this here

Research papers

Two other papers that may be of your interest that talk more about co-design/co-production of care/services:
 
 
 
And research oriented resources, may be useful for any researchers interested in taking on this work:
The AP2 website – International Association for Public Participation is a great resource . Here is the resource page for their 3 pillars: https://www.iap2.org/page/pillars
 
And the Canadian Institute of Health Research’s Ethics guidance for developing partnerships with patients and researchers and their webpage for their overall Strategy for Patient Oriented Research
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Investigating Trust, Expertise, and Epistemic Injustice in Chronic Pain

Investigating Trust, Expertise, and Epistemic Injustice in Chronic Pain

Investigating Trust, Expertise, and Epistemic Injustice in Chronic Pain

Synopsis

Trust is central to the therapeutic relationship, but the epistemic asymmetries between the expert healthcare provider and the patient make the patient, the trustor, vulnerable to the provider, the trustee. The narratives of pain sufferers provide helpful insights into the experience of pain at the juncture of trust, expert knowledge, and the therapeutic relationship. While stories of pain sufferers having their testimonies dismissed are well documented, pain sufferers continue to experience their testimonies as being epistemically downgraded. This kind of epistemic injustice has received limited treatment in bioethics. In this paper, we examine how a climate of distrust in pain management may facilitate what Fricker calls epistemic injustice. We critically interrogate the processes through which pain sufferers are vulnerable to specific kinds of epistemic injustice, such as testimonial injustice. We also examine how healthcare institutions and practices privilege some kinds of evidence and ways of knowing while excluding certain patient testimonies from epistemic consideration. We argue that providers ought to avoid epistemic injustice in pain management by striving toward epistemic humility. Epistemic humility, as a form of epistemic justice, may be the kind disposition required to correct the harmful prejudices that may arise through testimonial exchange in chronic pain management.

Key Points

The first challenge relates to the conflicting obligations HCPs face in providing care for patients living with pain, especially when the pain sufferer is also living with addiction and mental illness.

The second challenge is that epistemic humility re- quires the HCP to be empathic and compassionate in inviting the pain sufferer to tell their story.

A third challenge in motivating epistemic humility is that caring for patients with pain can be demand- ing. Many providers are overworked and overburdened

Further reading

We would strongly recommend you to read this paper. You can find a full text here

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Pain doesn’t stigmatize people. We do that to each other

Pain doesn’t stigmatize people. We do that to each other

Synopsis

This is a bit heavier reading yet really important, Pain doesn’t stigmatize people. We do that to each other. By DANIEL S. GOLDBERG JANUARY 23, 2020 – published on StatNews.com. Well worth a read. For the full article you can the the link. 

 A bioethicist who did his PhD on stigma in chronic pain: 

‘I view stigma as the combination of difference plus deviance: An in-group marks an out-group as different on the basis of a shared demographic characteristic, then judges the out-group as deviant. This is precisely what happens too many people in pain. They are marked as different because of their pain, and then have that pain denied, invalidated, and delegitimized. This is more likely to happen to women and racial or ethnic minorities than to white men.’

To alleviate pain stigma, we also have to decouple it from the stigma directed toward opioid use. While these two types of stigma often occur in the same spaces, they are not identical. We stigmatize people in pain, like my friend Andrea, who neither take nor desire opioids. And we stigmatize individuals who take opioids even if they do not live with chronic pain. A focus on opioid stigma is welcome and important, but it is not equivalent to intervening specifically to address pain stigma. Both of these terrible burdens deserve our attention and efforts.

We have tools to effectively and fairly treat people who live with chronic pain. We have the power to help them live better. We should do so, and without stigma.

The author

Daniel S. Goldberg is a faculty member in the Center for Bioethics and Humanities at the University of Colorado Anschutz Medical Campus, associate professor of family medicine at the University of Colorado School of Medicine, and associate professor of epidemiology at the Colorado School of Public Health. He is the principal investigator of an epidemiologic study related to addiction stigma funded by The Well Being Trust, a 501(c)(3).

Professor Goldberg also wrote ‘Pain, objectivity and history: understanding pain stigma‘ in BMJ and they did an interview with him about it: https://blogs.bmj.com/medical-humanities/2017/12/21/daniel-goldberg-shame-stigma-medicine/

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Why Do We Fear Co-Producing Health with Patients?

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

Synopsis

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.

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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

Synopsis

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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A way Forward and No Going Back

Synopsis

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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Acknowledgement of patient partners in patient-oriented research

patient-oriented research

Acknowledgement of patient partners in patient-oriented research

Synopsis

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

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