EdgeTalk June 2017: From Me to We – The Future of the NHS as a Social Movement - Jacqueline del Castillo
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EdgeTalk June 2017: From Me to We – The Future of the NHS as a Social Movement - Jacqueline del Castillo
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EdgeTalk June 2017: From Me to We – The Future of the NHS as a Social Movement - Jacqueline del Castillo
- 1. Health as a Social Movement
- 3. Social movements are one of the most effective forms of pressure on health and care systems
- 4. “What does the NHS expect? For people to camp outside of hospital?”
- 6. One way to get social movements wrong is to see them everywhere Charles Tilly, preeminent sociologist
- 7. What can we learn from social movements that have scaled?
- 9. “We cannot understand social movements unless we understand how they spread”
- 10. Vision: what change do you want to SEE? Actions: what can people DO?
- 11. Diffusion of social movements
- 12. Diffusion of social movements CULTURAL CHASM
- 13. Diffusion of social movements CULTURAL CHASM
- 16. A small change in how we manage notes can bring about a cultural change in how health care is delivered and experienced
- 17. Impact to date 1. Adoption by 7 million patients internationally 2. Cultural change in medical practice 3. Clinically relevant benefits: improved patient safety, medication adherence, patient recall 4. Potential to save healthcare costs
- 18. Adverse Childhood Experiences (ACEs) movement
- 19. “My patient said, being overweight is SAFE.” - Dr. Vincent Felitti
- 20. 10 adverse childhood experiences NEGLECTABUSE HOUSEHOLD DYSFUNCTION
- 22. The correlations
- 23. 86% of U.S. healthcare costs spent on people with >1 chronic condition $5.8 T estimated impact of the social costs and lost earnings associated with child maltreatment in US alone The economics of prevention
- 24. Training teachers and students about ACEs and toxic stress over 10 years 66% decrease in youth arrests for violent crime, saving more than $1.4 billion
- 25. Growing leaders and recruiting spokespeople Resolving conflicting approaches within movements Crafting a unified message Institutions ‘getting in our way’ Applying pressure to current institutions and systems People starting too many movements Limited funding for movement activity Ensuring the right ‘voices’ within a movement Incorporating evaluation methods for social movements
- 26. “People in power are people.”
- 28. “Don’t start a social movement, join one.”
- 29. “You need to get to the point where you are so exhausted by a problem that you are willing to dedicate everything to a solution”
- 30. 30+ movement leaders 10+ social movements 10+ countries
- 31. Dr. Nadine Burke, Founder of Center for Youth Wellness
- 33. “Remember, people in power are people.”
- 34. ACEs are common
- 37. HIV/AIDS Disability rights Tobacco control Breast cancer Rare disease End-of-life/palliative care Global mental health Open data movement Adverse childhood experiences Complementary & alternative medicine Alzheimer’s disease
- 38. “If you think this is anything less than a human rights movement, think again… the smoking fight took 60 years.”
- 39. A HEALTH SOCIAL MOVEMENT IS: promote resist or
- 40. Why is this issue ripe for a movement? 1. Childhood trauma is stigmatised 2. There are deep cognitive biases to break amongst medical practitioners 3. Research uptake has been low, especially in healthcare 4. Pathways to solutions now exist 5. People are mobilizing around the issue
- 41. Empathises with people and communities Mobilises people and resources Pressures systems to change Orbits existing systems Waves in intensity over time Experiments with new ideas Rages and roars for issues that matter Self-governs its own activities A social movement EMPOWERS
- 42. A new model of engagement Social Movements The NHS, Health & Care Organisations A healthy tension: How might the NHS engage with social movements most productively?
- 43. One path to institutionalisation
Editor's Notes
- We feel that “social movements,” as mechanisms of change, are extreme importance to health systems everywhere that are grappling with their future sustainability.
- In Nesta’s Health Lab, we call this People-Powered Health. And, in particular, within movements, we see people coming together to address their own issues - issues faced by marginalized groups, power imbalances, inequalities, gaps in services offerings, human rights, widespread stigma and contested illnesses. But, they can also promote preventative lifestyles and the wider determinants of health.
- Social movements are one of the most effective forms of pressure on health and care systems. “You need to get to the point where you are so exhausted by a problem that you are willing to dedicate everything to a solution” Melissa Creary, Assistant Professor, University of Michigan School of Public Health
- Last September, we launched a report on social movements in health which detailed the value of social movements to health and care. Two major insights were: There is a need to develop models of engagement between social movements and institutions. There is no definitive definition of a social movement. It is more interesting to look at how they behave and grow.
- boundary
- There is no blueprint for a social movement. But, there are powerful practical insights and principles that any change maker can apply.
- We’re all familiar with the transformative change that has been brought about by social movements like HIV/AIDS where people chained themselves to fences to access to drugs.
- We cannot understand social movements unless we understand how they spread
- So, what spreads in a social movement?
- When I attended a movement meeting, this is what one woman said.
- In 2007, Steve Keating volunteered to participate in a scientific research study. An MRI revealed a brain abnormality which later developed into a massive tumour. Since his diagnosis, he has become an activist in the OpenNotes movement, encouraging doctors to share medical records with patients and patients to participate in their own care. “No one really sees the problems involved in getting your own data until you’re in the hot seat… How come, as a patient, we’re last in line to our own data?” says Steve. “When I suggested this to my colleagues, half of them thought I’d lost it… we wanted to offer ready-access to patients for those things that we write about them. The law gives them access to it. But we’ve made it as difficult as humanly possible for them to access it,” - Tom Delbanco, MD, Co-Founder, OpenNotes, Harvard Medical School An initial experiment involved 3 Boston hospitals, 100 doctors and 20,000 patients. At the end of 12 months, no doctor wanted to give up the program and 70% of patients reported feeling more in control of their health. OpenNotes started in 2010 with a vision for patients becoming partners in their own care through transparent medical records. The ultimate goal is better decision-making, better care and patients feeling more in control of their health.
- OpenNotes started in 2010 with a vision for patients becoming partners in their own care through transparent medical records. The ultimate goal is better decision-making, better care and patients feeling more in control of their health. An international movement supporting the adoption of open notes and calling for a fundamental change in medical practice.
- The movement has reached 7 million patients. In December 2015, three foundations invested $10 million to reach 50 million patients over three years.
- When I attended a movement meeting, this is what one woman said.
- The ACEs movement is based on a study published in 1998 conducted by the CDC and Kaiser Permanente. The doctor who ran it, Dr. Vincent Felliti, was running an obesity clinic. He noticed people were losing massive amounts of weight - 50 kilos, 100 kilos - and then, immediately gaining it back. When he asked one woman why she gained it back, she said, “For me, being overweight is safe.” She had been abused as a child. He wondered if this might be true for other people.
- He conducted a massive study linking patient medical records and their symptoms to a questionnaire about their childhood experiences. The study identified 10 adverse childhood events…
- And, direct correlations with unhealthy behaviors and most major chronic disease.
- The correlations are astonishing.
- And the economics, are startling.
- https://www.youtube.com/watch?v=tMaBi-SVPjo
- 30+ movement leaders 10+ social movements 10+ countries
- https://www.youtube.com/watch?v=tMaBi-SVPjo
- Turns out, ACEs are common.
- Breast cancer where celebrities like Shirley Temple spoke out to break the stigma surrounding breast cancer.
- We also know that social movements are one of the most effective forms of pressure on NHS services.
- When I attended a movement meeting, this is what one woman said.
- So, what do we know about social movements? We know that a social movement EMPOWERS - this doesn’t mean from the top-down. It means that people in movements feel empowered. The acronym represents how movements behave.