Jacqueline del Castillo
Lydia Nicholas
Rachel Nye
Halima Khan
Publication Date
November 29, 2017

This report from the global innovation foundation Nesta presents actionable ways to grow social movements based on the practical experience of over 40 social movement leaders, allies, and dissenters around the world. It looks primarily at four movements - HIV/AIDS, global mental health, rare disease, and disability rights - and includes a diverse set of additional examples. The insights are intended to be conversation starters about what learnings might be applicable to movements in the United Kingdom (UK) and to broader movements affecting the social determinants of health. This report forms part of Nesta's larger Health as a Social Movement programme, funded by National Health Service (NHS) England and conducted in collaboration with a set of organisations and professionals, to understand how people in movements bring communities together to drive change.

To select social movements, Nesta asked the following questions: Is the movement aiming to improve health or wellbeing, either directly or indirectly? Are people referring to it as a social movements (versus an organisation or initiative)? Is it challenging existing norms, beliefs, institutions, or systems? Has it changed form or scale, moving from grassroots to policy to institutions to law? Does it claim to have shifted values and norms or contributed to system change? Research spanned countries where activism is particularly high, including the UK, United States (US), South Africa, and India. The people who were interviewed represent these global social movements:

  • HIV/AIDS has achieved mass grassroots mobilisation, rapidly bringing people with lived experience together, and has engaged a range of global institutions to fight for equal access to treatment for all.
  • Global mental health represents a vast group of people, in overlapping and often conflicting sub-movements, fighting to improve the lives of people with mental illness. Some of their aims include generating evidence, closing the treatment gap for people in low-income countries, and promoting human rights.
  • Rare disease, consisting of intersecting efforts to improve conditions for people affected by the over 7,000 identified rare diseases, often involves leading research, organising peer support, and developing new networks that challenge established structures and power relationships.
  • Disability rights promotes the participation of disabled people in policy and service delivery globally and helps bring the world's attention to the human rights of disabled people internationally.

Insights around three themes emerged through the research - how social movements get off the ground, who they involve, and how they influence through relationships. In brief, it was found that social movements:

  1. Focus on an important set of early actions, including cultivating leaders and early members, nurturing a diverse set of collective actions, developing effective messages, utilising assets and resources creatively, and coordinating activity within and outside of the movement. When a social movement grows, it spreads a vision and set of collective actions to attain it, as opposed to traditional change programmes, which encourage the adoption of an intervention, product, service, or programme. Successful social movements grow in influence by engaging the right people in the right places at the right time.
    • One tool described as effective in addressing challenges associated with message development in the context of diverse, and often conflicting, ideologies and approaches within a movement is framing. An example of this dynamic process of developing communication messages that speak to the interests and motivations of specific audiences comes from the breast cancer movement, which during the 1990s in the US used three frames to redefine breast cancer from an individual problem to a major public health crisis in demand of federal funding: (i) breast cancer as an epidemic, which created a sense of urgency around the disease; (ii) breast cancer as a gender inequity issue; and (iii) breast cancer as a threat to family stability, a message that was timely in the context of American politics. The Frameworks Institute, a non-profit in Washington DC, US, works with advocates to frame social issues and devise communications strategies. Their "Hall of Frames" features work on the social determinants of health, and their Gaining Momentum communications toolkit challenges American advocates to reframe the conversation on ageing - so, rather than current cultural idioms such as "fighting" ageing, they advocate positioning ageing as a process with forward momentum, highlighting the untapped potential of an ageing population and the risks associated with bypassing that potential. A test of how this metaphor affects people's implicit bias has showed that it reduced people’s subconscious ageism by 30%.
  2. Understand the value of cultivating a diverse set of voices and the unique experiences, skills, and interests they bring. The research revealed five "voices" that contribute to a social movement's success: people with lived experience, pioneers of knowledge, subject experts, spokespeople, and institutional supporters.
  3. Make smart trade-offs about where and how to invest their energy in relationships to achieve the highest level of influence and impact. Social movements influence, and are influenced by, a complex web of relationships with informal and formal groups, including institutions, funders, dissenters, public opinion, the media, and other movements.

In addition to questions to spark action outlined in text boxes around each of the above themes, the report offers policy recommendations, including:

  • Applying the insights from this report to a UK context will require adaptation and translation.
  • How an institution responds to a social movement can have a significant impact on the movement's lifecycle and impact. People in institutions can be encouraged to work alongside early-stage movements to support their autonomy and avoid early co-option.
  • People desiring to fund social movements can learn from people who have experience, such as the New World Foundation and the Robert Wood Johnson Foundation.

Nesta website, December 5 2017. Image credit: Nesta