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As health care systems grapple with planning for an uncertain future during the COVID-19 pandemic, how do we ensure that people with lived experience are real partners in what comes next? Whichever term we use — recovery, reset, or restart — we have an opportunity to pivot from command-and-control in crisis to co-production of a “new normal.”
Co-production means having patients on the design team co-creating from the start of an improvement effort. We face two overlapping challenges in putting lived experience front and center of the next phase of our COVID-19 response: 1) the unavoidably rapid pace at which we must work and the common misconception that co-production takes a long time and 2) a paternalistic assumption that senior clinicians and managers know best and understand what matters most to patients.
There is an increasing amount of evidence that co-producing change and improvement in health care leads to new approaches that are more likely to succeed and be sustained. One example is using an Always Event® approach. It is being used by over 50 percent of health care providers in England and activates patients and providers collective agency to co-produce and commit to change.
We have identified three conditions needed to quickly co-produce crisis recovery. These draw on learning from the IHI Psychology of Change Framework and early national recovery planning in musculoskeletal services in England:
- Create a culture of co-production where patient and clinical leaders actively embrace partnership and collaboration through open and honest conversations and a shared vision and aim. Invite people to be “comfortable with the uncomfortable uncertainty” of not knowing the outcome at the start of the journey. Suspend pre-conceived ideas about “what people will say.” Instead, show curiosity and listen to people’s experiences — whether lived or learned — about their change ideas and what matters to them.
The assumptions of clinical staff may be different from what matters most to patients. For example, staff in one NHS outpatient unit worried about seeking feedback from patients. They assumed they would get complaints about wait times and demands for more staff. Instead, patients requested to know they were in the right place and to be informed about delays so they could get a coffee or put more money in the parking meter without fear of missing their appointment. - Involve people with lived experience as equal partners from the beginning and every step of the way. This should include in formal roles and meetings and informally through on-line platforms and social media. Depending on the context, partners with relevant lived experience may also include people from the government, non-profit agencies, and civic bodies and organizations.
People with positional authority can invite others to share their ideas. When using the Always Events® approach to co-design, health care providers identify aspects of the patient experience that are important to patients, their care partners, and service users and work with them to design and test changes. It starts with the question “What matters to you?” Patients bring a diverse range of experiences and views about new forms of service delivery or proposed changes. This puts the patient at the heart of what comes next.
- Amplify the voices of people with lived experience. This does not necessarily take extra time and effort, but it does require having an honest conversation about the ways that power shapes the dynamic between patient and provider. We cannot embark on co-production without recognizing inequity — the unfair and unjust distribution of power and resources. To amplify the voices of people with lived experience is to acknowledge that systems of oppression — racism, sexism, and classism, for example — shape the current conditions in our communities and health systems.
Used flexibly, forms of virtual communication can support this process, including social media, email, and online sharing and meeting platforms. For example, the Twitter conversations of people shielding during the COVID-19 pandemic in England revealed that they did not want to be passive recipients of care. Some expressed that they wanted to contribute and support others, which led to the development of a national telephone peer support volunteer role.
In the same way clinicians have adapted ways of working during the COVID-19 crisis, patients are adjusting their self-management of care, and patients and providers are co-producing care in telehealth visits. This period provides a unique opportunity to rapidly develop new kinds of partnerships. By co-producing what comes next with people with lived experience, we help to ensure that those directly affected by the pandemic guide the next phase of COVID-19 recovery.
Cristina Serrao is Lived Experience Ambassador, NHS England/Improvement; David McNally is Head of Experience of Care, NHS England/Improvement; Helen Lee is Experience of Care Professional Lead, NHS England/Improvement; Kate Hilton is faculty, Institute for Healthcare Improvement; and Alex Anderson is a Research Associate, Institute for Healthcare Improvement. Both Hilton and Anderson will be faculty for IHI's Psychology of Change Online Course with Coaching.
You may also be interested in:
Conversation and Action Guide to Support Staff Wellbeing and Joy in Work During and After the COVID-19 Pandemic
IHI's Psychology of Change Online Course with Coaching
IHI Psychology of Change Framework White Paper
The Always Events Toolkit
More COVID-19 Guidance and Resources
