What do healthcare systems need to truly work in partnership with the communities they serve?
Stream: People
One on level, focusing on the idea of people in healthcare sounds obvious. People lead healthcare, people receive healthcare, people research healthcare. When we talk about lots of people and healthcare we talk about communities, populations, countries, or hemispheres.
As Ian Leistikow said in one of the video interviews with The Mental Elf from the conference: "Healthcare is the epic battle of humanity against nature." (Watch the video at the bottom of this article)
Healthcare has been through its ages, from a heroic age to a scientific age to a systems age and beyond. As the 21st century matures, it has become clearer that health is not best achieved by a top-down, technocratic approach.
A generation ago, it would have been natural to assume that a quality improvement conference stream titled ‘people’ was concerned with healthcare workforce development. Indeed, NHS England’s NHS People Plan is concerned with exactly this. At this year’s International Forum on Quality and Safety in Healthcare the theme of people was deeper and broader than this, focusing on how healthcare organisations might work more closely with people’s lived experience in improvement.
While professionals in healthcare spend their work life treating ill-health and providing care, health and its absence happens in the lives of people, in the communities and circumstances in which they live.
This year’s forum foregrounded the status of lived experience, platforming lived experience partners both in the formulation of the forum programme itself and work between healthcare organisations and the people who belong to the communities they serve.
Lived experience of health conditions, disability and exclusion and inequity in society, and in experiences of healthcare, are the ways in which individuals and communities pass through the provision of healthcare services and organisations.
Health and care begins with people. Healthcare professionals are in a relationship with the people and communities they serve, with the people who belong to their organisation and with people who work in other services systems and institutions. Organisations are in relationships with regulators, politicians, patient groups, insurers and community leaders. Patients are in a relationship with individual clinicians, with organisations and with whole systems.
Where people and communities have been on the receiving end of the neglect, arrogance, ignorance or privilege of others, these relationships will be negative and disempowering.
Without individuals and organisations being ready to build lasting, respectful and generative relationships outside of their organisation, efforts to ‘include’ those with lived experience will continue to propagate the kinds of experience they are intended to resolve.
In a session on co-production in action Cristina Serrão, Lived Experience Ambassador, NHS England, said that the key to coproduction is connecting with people. This requires collaborating with community leaders, being flexible and going where people are.
NHS England’s guidance gives five levels of working with people to improve health and care:
These levels increase in the degree of trust and the depth of relationship required, with co-production asking the most of people’s capacity to listen and to employ empathy, self-reflection and to put their experience, lived and learned, to the task of improving opportunities for the best possible health for communities as a whole.
In a session titled ‘Less talk, More Action: partnering with community leaders to reduce race inequalities’ David Bussue of Sheffield African Caribbean Mental Health Association and Melissa Symonds, Paraya Rostami and Salli Midgley of Sheffield Health and Social Care focused on work to reduce the impact of racism in mental health care.
In the UK, Black people are more likely than white people to be diagnosed with mental health conditions but have the lowest rate of treatment of any ethnic group at 6% compared to 13% of white British people. Black people are under-represented in primary care treatment lists, but over represented in secondary care lists. In 2022, Black people were 5 times as likely as white people to be detained under the mental health act.
Their project, an exercise in co-production, aimed to begin to address this inequity.
The team shared a diagram from Virginia Mason Institute detailing common behaviours displayed by people with power and privilege, often unintentionally, and the common inequities experienced by people without power and privilege. This ‘Waste Wheel’ had been used to guide conversation. Inequity is reenacted and perpetuated by people and organisations :
These behaviours create:
The team stressed that building trust and partnership between communities and healthcare providers must come prior to agreeing an aim for any partnership or co-production. Such partnerships must begin with an honest, professionally vulnerable conversation where the healthcare organisation must hold a mirror to themselves and reflect on what they are actually doing.
Co-production involves a sharing of power to define what is important and the task of working together to bring different kinds of power together to arrive at a common goal and an agreed aim and set of actions to bring that goal into the realm of possibility. It’s an active process of recognising where particular power has allowed the shaping of action to take place in the absence of those most affected by those actions. Claire Snyman told the conference that Canadian healthcare providers are increasingly recognising the strategic value of co-production and co-design as a vital step in improvement. For Pedro Delgado,Vice President, Institute for Healthcare Improvement, co-production must be underpinned by humility in the presence of others' knowledge; curiosity in the form of appreciative enquiry and love; both for healthcare and one’s own health.
The conference heard from April Kyle and Doug Eby of Alaska’s South Central Foundation about the Nuka system of care, a twenty five year journey of community-driven transformation.
Southcentral Foundation is an Alaska Native-owned, nonprofit health care organisation serving approximately 70,000 Alaska Native and American Indian people living in the Municipality of Anchorage, Matanuska-Susitna Borough, and nearby villages.
Incorporated in 1982 under the Tribal authority of Cook Inlet Region, Inc., Southcentral Foundation is the largest of the CIRI nonprofits, employing more than 2,700 people in more than 80 programs.
Presented with a need to improve services, Southcentral Foundation considered three possible routes. The first was a ‘centres of excellence approach’, focusing on specialist efficiency and effectiveness. The second was a ‘whole person approach’ focusing on high capability hubs bringing all services together around powerful and inclusive care coordination. The third was a ‘consumer convenience’ model, basing everything either in the home or in schools or community centres. The chosen path for transformation was a ‘whole person approach, which became known as Nuka.
Nuka’s vision is a Native community that enjoys physical, mental, emotional and spiritual wellness. Its mission is to work together with the Native Community to achieve wellness through health and related services.
Key to Nuka’s wraparound service model is the involvement of the community at all levels, including within the staff team. Kyle and Eby point out that the traditional medical model can replicate the historic harms of colonisation, and that the key to Nuka is avoiding this. The model is based on positive relationships:
Relationships between customer-owners, family and provider must be fostered and supported
Emphasis on wellness of the whole person, family and community (physical, mental, emotional and spiritual wellness
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Locations convenient for customer-owners with minimal stops to get all their needs addressed
Access optimized and waiting times limited
Together with the customer-owner as an active partner
Intentional whole-system design to maximize coordination and minimize duplication
Outcome and process measures continuously evaluated and improved
Not complicated but simple and easy to use
Services financially sustainable and viable
Hub of the system is the family
Interests of customer-owners drive the system to determine what we do and how we do it
Population-Based system and services
Services and systems build on the strengths of Alaska Native cultures
Effective leading in healthcare requires modelling in day-to-day working life the values that are the foundation for improvement. Bob Klaber, Consultant General Paediatrician & Director of Strategy Research & Innovation, Imperial College Healthcare NHS Trust shared Michael West’s work on the four behaviours of compassionate leadership:
Klaber noted that organisations where these four behaviours were widely present, staff wellbeing, team-working and financial performance are markedly better. These behaviours are also the prerequisite for effective co-production.
Fundamental to these relationships are the extent to which parties listen and to which other parties are heard. Maureen Bisognano, President Emerita and Senior Fellow, Institute for Healthcare Improvement, shared with the conference an account of the importance of listening as an active skill and capacity in healthcare which underpins improvement. The absence of listening perpetuates and deepens inequity.
Bisognano told the conference that Black women in the United States are at three to four times the risk as White women of death from pregnancy-related causes, regardless of socio-economic differences. Racism and other inequities within the healthcare system and across the life course contribute to this disparity. Supporting birth, or any other form of equity in healthcare requires holding the healthcare system accountable for addressing racism and social inequities.
Healthcare organisations that cannot, or do not listen, cannot learn and improve. Listening is not an activity, but a quality.
Maureen Bisognano defined four levels of listening:
Respectful curiosity, allied with finding common ground and acknowledging difference, negotiation, creativity and learning from listening, creates in individuals, in teams and organisations the grounds for avoiding the continuation of received ideas, acknowledged and unacknowledged prejudices and habitual assumptions.
In a session at the conference about kindness, Bob Klaber shared Len Berry et al’s research into kindness in cancer care. This work identified six distinct types of kindness:
Kindness in this respect was not just being ‘nice’, but being present with honesty and a clear intention to meet those being cared for, and their families and carers, as they were in their emotions and their situation.
In Intelligent Kindness: Rehabilitating the Welfare State by John Ballant, Penelope Campling and Chris Maloney the authors define a cycle of kindness, in part in an effort to answer the question ‘why do seemingly caring staff behave unkindly?’ as witnessed in examples of healthcare failure and poor care.
In their cycle, kindness directs attentiveness, which in turn enables attunement to the needs of others. This attunement builds trust which generates a therapeutic alliance between the patient or service user and a practitioner or service, which in turn creates better outcomes.
Each part of this cycle reinforces the other, bringing to the fore the human relationships that underpin health activity. Better outcomes create kinship, which removes the barrier of ‘them and us’, which in turn reinforces the capacity for kindness.
Opinions differ as to whether it is possible to measure kindness and listening within healthcare organisations. Bob Klaber pointed towards the work of Simon Anderson and Julie Brownlie at Carnegie UK and their report ‘Getting the measure of Kindness’, saying that ‘what gets measured is what gets done’.
In many cases, co-production will involve repairing a relationship between people and communities and the services that have provided them care. While the practices of co-production and co-design can, and often should, be tools of quality improvement, the work of improving the capacity and capability for organisations to listen and exercise kindness in such relationship building should not be outside of the quality improvement lens.
Watch Ian Leistikow's video interview with The Mental Elf: