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The power of people in movements for health

Today, Nesta is launching a new report, Health as a Social Movement: The Power of People in Movements, produced as part of NHS England’s Health as a Social Movement Programme. It illuminates the value and role of health social movements and aims to foster debate, experiments and development of a practice around social movements in health.

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. The AIDS movement, the breast cancer movement and the disability rights movement have all aimed to transform people’s experiences of their own health and identity and the systems which shape it.

Social movements have been gaining increased attention, especially in the context of health and care, as an effective and timely bottom-up approach to system-level change.

A health social movement is a people-powered effort to promote or resist change in the experience of health or the systems that shape it

In their purest form movements are messy, dynamic and emergent. They arise outside formal institutions and beyond established power structures. They challenge and disrupt. They buffer us against dehumanised services, marginalisation, inequality, inequity, and the rigidity and constancy of entrenched institutions. They often make society, elites and institutions deeply uncomfortable as they challenge accepted values, priorities and procedures.

Which is why it is extraordinary, and potentially unprecedented, for the leader of a major public institution like the NHS - a system that is understandably highly controlled, with clear hierarchies, rules and protocols - to actively call for more social movements.

But this interest in movements does coincide with the limits of a ‘treat and cure’ model. Excellent clinical care is both essential and absolutely not enough for the complex issues we face. There is a consensus that we need to move upstream to prevent ill health. But this requires a whole set of actions that are beyond the reach of traditional formal services and which move into the social sphere and into the everyday lives of people. In this context, it is unsurprising that the language and approach of social movements becomes attractive.

The interface between social movements and institutions also create challenges which surface healthy tensions: 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? What are the limits of social movements?

This creative tension between people and institutions lies at the heart of our work on People Powered Health. This report proposes the need for new models of engagement that draw effectively on both the efficiency and scale of institutions and the dynamism and agility of movements.

Social movements are not a panacea for all of our health and care issues. Yet, they do represent one timely approach to the system-level transformation so urgently needed in health and care. This report proposes a foundation or platform for future work related to engaging with movements for health.

In the meantime, a few things everyone can do:

  • Be careful what you call a ‘social movement.’ Take time to understand what they are and how they behave as unique entities and mechanisms for change. It is the characteristics of a movement coming together that makes them what they are, not any single characteristic.
  • Reflect on your own personal and leadership practice to ensure you are creating the conditions in which the people around you who are and could lead change in the community are able to.
  • Don’t create a movement just to create one! Join one - the second follower is usually more powerful than the first.

We are immensely grateful to everyone who contributed to this report. The expertise, knowledge, and perspectives have been immensely valuable in generating a report that will hopefully stimulate critical debate, interaction, and follow-on programmes. As always, all errors and omissions remain our own.

Author

Jacqueline del Castillo

Jacqueline del Castillo

Jacqueline del Castillo

Senior Programme Manager

Jacqueline works in Nesta's Health Lab on initiatives that empower people and communities to improve their own health and the systems which shape it. Most recently, she has been invo...

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Halima Khan

Halima Khan

Halima Khan

Executive Director, Health Lab

Halima is Executive Director of the Health Lab, which aims to create a people powered health system. Health Lab brings together Nesta's practical work on health and ageing to achieve...

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