This report illuminates the power of people in movements to improve health and proposes the need for new models of engagement between institutions and social movements.

Key findings

• People working together in social movements have changed how we experience health and the systems that shape it: reducing stigma around issues like breast cancer, improving end of life care, winning rights for those with disabilities, advancing clinical research and reframing health priorities.
• The report identifies seven ways social movements impact health and care and illustrates the transformative potential of movements through over 20 national, international and historical examples.
• Social movements put pressure on societal systems to accelerate transformation, respond directly to the experiences of people and can diffuse change widely across populations. Yet, they can be messy, turbulent and risky. They represent one approach to the transformation so urgently needed in health and care.
• It is potentially unprecedented for a major public institution like the NHS - with clear hierarchies, rules and protocols - to actively call for and nurture social movements.
• Effective encounters between institutions and movements will require new models of engagement that draw on the efficiency and scale of institutions and the dynamism and agility of movements. The report also stresses that understanding how social movements behave is critical to engaging with them.

There is a unique power to people in social movements - one in which purposeful citizens have the determination and courage to stand up, speak out and seek change in the issues that matter to them and their loved ones.

Movements are agile and dynamic but also messy and turbulent. They arise outside formal institutions and established power structures. They challenge and disrupt. They are restless and determined. They often make society, elites and institutions deeply uncomfortable as they challenge accepted values, norms, priorities and procedures.

There are inherent challenges in established organisations like the NHS working alongside more emergent practice-like movements. Many questions emerge: how can formal institutions work with something as restless and intangible as a movement? Who is accountable to whom? Can shared purpose be created without co-opting citizen-led change?

If institutions and movements are to partner effectively and build on their strengths, new models of engagement must be devised, with commitment on both sides to engage and create better ways of doing things.

Authors

Jacqueline del Castillo, Halima Khan, Lydia Nicholas, Annie Finnis