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
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
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.”
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?
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.