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Why Do We Fear Co-Producing Health with Patients?

Why It Matters

Two health care professionals share how they have embraced the process of co-producing care by facing up to their own fears and vulnerabilities.
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Why Do We Fear Co-Producing Health with Patients

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.

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

The Human Side of Change

Over time, patients showed Helen that she and her colleagues — despite their expertise — didn’t have all the answers. Patients helped Helen understand the necessity of learning from (and with) people with lived experience. Working with people in this way made her realize that she needed to embrace the discomfort she was feeling, work in partnership, and spend time understanding what mattered to her patients.

We recently hosted a tweet chat with the Arthritis and Musculoskeletal Alliance (ARMA). The image below highlights the feedback we got about perceived barriers to co-production in orthopaedic and rheumatology services:

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Perceived Barriers to Co-Production in Orthopaedic and Rheumatology Services

Communication and power dynamics, to highlight two examples, relate to how humans interact. Though the people part of change has long been recognized as an important aspect of QI, it is too often neglected.

In his last blog post as CEO of the Institute for Healthcare Improvement (IHI), Derek Feeley noted that we sometimes see improvement work in purely technical terms. “We often forget the human part,” he noted. “If we go back to W. Edwards Deming and the four domains of the Theory of Profound Knowledge, we don’t generally spend enough time on the psychology domain.” Co-Produce in Authentic Relationship is one of five interrelated domains of practice in the IHI Psychology of Change Framework that organizations can use to advance and sustain improvement.

People using health care services share their life with us every day, often when they are at their most vulnerable. We must take the leap and lean into our vulnerability with compassion to effectively co-produce better care with patients. It is absolutely worth it when we do.

What can we do to make co-producing with patients the way to improve? How do our experiences and reflections compare to yours? Tweet us with your thoughts and ideas.

Helen Lee (@helenlee321_lee) is Experience of Care Professional Lead in the Experience of Care Team at NHS England and NHS Improvement. Aimee Robson (@AimeeRobson4) is the Head of Personalised Care (Clinical, Workforce & Quality) in the Personalised Care Group for NHS England.

You may also be interested in:

Always Events® — a co-production quality improvement methodology

Care Quality Commission — Quality improvement in hospital trusts: Sharing learning from trusts on a journey of QI

Patient Experience Journal — NHS England Always Events® program: Developing a national model for co-production

Putting Always Events at the Center of Patient-Centered Care

Co-production for personal health budget and Integrated Personal Commission summary guide

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