Friday, February 16, 2024

 

Entrepreneurship on the periphery: between precarious work and the search for a meaningful life


A study conducted in a poor suburb of São Paulo city (Brazil) analyzed how low-income communities deal with the hardships deriving from the economic crisis that began in 2014 and worsened during the pandemic


Peer-Reviewed Publication

FUNDAÇÃO DE AMPARO À PESQUISA DO ESTADO DE SÃO PAULO

Entrepreneurship on the periphery 

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THROUGHOUT THE STUDY, ENTREPRENEURSHIP EMERGED AS ONE OF THE MAIN STRATEGIES USED BY THE POOR TO FIND AN ECONOMIC ROLE IN THE CONTEXT OF THE CRISIS

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CREDIT: VALTER CAMPANATO/AGÊNCIA BRASIL




Understanding how the poor deal with the effects of the economic crisis into which Brazil plunged in 2014 was the aim of the research project “The crisis seen from the periphery: struggle for social mobility in the frontiers of (i)legality” conducted by Leonardo de Oliveira Fontes with FAPESP’s support (19/13125-2 and 21/13970-4). An article published in the International Journal of Urban and Regional Research is one of the results of the investigation.

Fontes is currently a professor in the Department of Sociology at the State University of Campinas (UNICAMP) in São Paulo state and a researcher in Urban Ethnography at CEBRAP, a think tank based in São Paulo City.

“Throughout the study, ‘entrepreneurship’ appeared as one of the main strategies used by members of poor communities to participate in the economy in the context of the crisis. This finding, which I obtained via a qualitative survey, was corroborated by quantitative data. A survey conducted in 2021 by the Global Entrepreneurship Monitor (GEM) showed that 50 million Brazilians who did not yet own a business would like to start one in the next three years. That number was 75% more than in 2020,” Fontes said.

The number was attributed mainly to the economic crisis, aggravated by the COVID-19 pandemic, and at least partly expressed the lack of a better alternative, since the average monthly income of informal workers had fallen from about BRL 2,200 in 2014 to BRL 1,991 in 2022. This compares with an average of BRL 2,472 per month for formal workers in 2022.

The outlying suburbs of big cities in Brazil are inhabited by low-income families and known as the periferia (periphery). The entrepreneurs surveyed can be divided into two groups, according to Fontes: those who work entirely in the informal economy, and those who join the formal economy by registering as “individual micro-entrepreneurs” (microempreendedores individuais, or MEIs), a type of sole proprietorship with a simplified tax regime for self-employed workers earning up to BRL 81,000 (now about USD 16,300) per year. More than 15 million people are now registered as MEIs nationwide, more than 1 million of them in São Paulo city.

“According to a ‘map of inequality’ [Mapa da Desigualdade] produced by Rede Nossa São Paulo in 2022, the study area for my research, Jardim Ângela, was the district with the second-largest proportion of MEIs, with 2.47% of the total in the city, behind Grajaú,” Fontes said. Jardim Ângela and Grajaú both belong to the periferia as low-income suburbs of São Paulo.

His research, on which the article is based, was qualitative and ethnographic, involving in-depth interviews and participatory observation in strategic locations. “Since 2019, I’ve been doing what we call participatory observation, in person or virtually, in trade shows and meetings for entrepreneurs,” he said. “For the project, I conducted some 20 interviews and had informal conversations with entrepreneurs from varying socioeconomic backgrounds who ran different types of business. I also interviewed some formalized workers, in order to compare their differing choices in terms of entry to the labor market.”

In his analysis of entrepreneurship among workers, he found two main perspectives in the sociological literature. Some authors see entrepreneurship as part of a neoliberal capitalist accumulation strategy, where issues such as the so-called “Uberization of labor” are central, alongside the loss of labor rights. Uberization, or the gig economy, is a term now used by some sociologists to refer to a system in which freelancers or independent contractors offer on-demand services via online platforms and apps controlled by large corporations.

The second approach Fontes detected was taken by authors who saw the growth of worker entrepreneurship as a mechanism of ideological persuasion whereby isolated poor individuals are held responsible for their own success or failure, their identity as “workers” is weakened, and their capacity for organizing and fighting for demands is undermined as a result.

“This second perspective is based on a book by Michel Foucault [1926-84] entitled The Birth of Biopolitics [published in English in 2008], in which ‘neoliberal reason’ is seen as a way of governing the poor via the idea of ‘self-entrepreneurship’. In other words, workers are persuaded to see themselves as small business units. This is a disposition produced in them by the system, so that they strive to maximize their income by investing their ‘human capital’,” Fontes explained.

He set out to move beyond these perspectives in his qualitative survey by looking for the origin of the entrepreneurial disposition in inhabitants of São Paulo’s periphery and analyzing the degree to which neoliberal practices took root in the behaviors and social institutions that existed there.

“My argument was that if the idea of entrepreneurship and even the values of neoliberalism [not necessarily the same thing] did indeed take root there, they had historical and social origins that went beyond mere ‘ideological persuasion’ or the construction of an entirely novel ‘neoliberal subjectivity’,” he said.

In the article, Fontes presents the cases of five interviewees belonging to three different families – two couples with children, and a single woman – with the aim of analyzing how gender roles also significantly influence development of an entrepreneurial disposition. He identified three sets of important moral values among men aged 50 or more: a “worker’s ethic”, a “getting-by ethic”, and a “provider’s ethic”.

“The worker’s ethic was constructed in the Brazilian urban peripheries in opposition to the figures of ‘criminals’ [bandidos] and ‘good-for-nothing scum’ [vagabundos]. Working, no matter how, and not being involved in any kind of criminal activity, ‘is the right thing to do’ for this older generation. So Hamilton, 49, told me, ‘My first job was as a scrap metal scavenger. I sold the scrap metal, and people said I was a beggar. When I was a child and a teenager, (...) it was that or nothing. I didn’t learn to steal, I didn’t become a drug dealer. I didn’t learn any of that. I learned to collect scrap metal. I worked. That was the right thing to do.’”

Getting by (se virar, which can also be translated as making do or surviving) centers on the idea of earning a livelihood to feed the family. You cannot afford to pick and choose. You must take whatever work comes along and do any odd jobs you can to supplement your income. As Hamilton told Fontes, “When I was a kid, we lived in a wooden shack. The roof leaked and we had to keep our stuff suspended on hooks so it stayed dry. My dad had taken off. We learned to survive and get by. That made us pretty self-reliant.”

The provider’s ethic centers on the idea that men are breadwinners (provedores). “There’s a certain heroism in this masculinity that values overcoming obstacles to give your children a better life than yours, and possibly to be able to afford ‘luxuries’ like vacation travel, a private school, medical insurance, or dining out on special occasions,” Fontes said.

Practically all his interviewees espoused the getting-by ethic. The women with children also expressed what he calls a “carer’s ethic” associated with the mother’s duty to be as present as possible for her children as they grow up. Here it is worth noting that 48% of Brazilian households are headed by women, according to research by Grupo Globo and IBGE, the national census bureau. Family structures are ever more rapidly being reconfigured in Brazil, he said. Whether they are the sole breadwinner or share this responsibility with a man or another woman, mothers often prioritize flexible work schedules so they can devote as much time as possible to their children, and this is where entrepreneurship comes in handy.

“Finally, among younger people aged 30 or thereabouts, another trend is emerging: the desire to pursue some kind of professional fulfillment. Although many people of this generation are motivated by the getting-by ethic, since from an early age they had to start doing paid work to help support the family, they often say they’re dissatisfied with their place in the labor market. This dissatisfaction may have to do with humiliation or oppression in the workplace, especially moral or sexual harassment in the case of women, but it may also reflect a disconnect between the job and what they would really like to do,” Fontes said.

Renata, 35, told him she felt “a certain repugnance” about her work in advertising, linked to an “excessive drive to make sales”. She saw her work as an entrepreneur, making and selling notebooks, as a way of life with meaning: “I don’t see it as just work or just a source of income. I value the emotional attachment, the motivational aspect. I’m motivated and moved to know my notebooks will go to people who like to write, to draw with charcoal or crayons, to do research and make notes from their reading, you know? All that is really fulfilling.”

Stressing the importance of meaningfulness, she also told Fontes that when someone says, “‘Look, Renata, I want 20 notebooks like this’, it’s crazy because 20 notebooks will be delivered by my business to that person and I know the person will give them to someone, maybe as a donation to a project. So I feel inspired by the person. It’s the positive feelings and my connection with the people who place orders with me that make the job special.”

Not all interviewees thought of themselves as entrepreneurs. Some preferred to call themselves freelancers or self-employed workers. On the other hand, some who accepted the label also complained that it had been debased and was now used to mask loss of rights or high unemployment. Others considered it dignified enough, not least because it highlighted their self-reliance and resourcefulness as “peripheral” workers.

As a result of his research, Fontes concluded that some neoliberal prescriptions had indeed become rooted or embedded in practices and projects that previously existed among urban working-class people. “It’s not a matter of winning hearts and minds, or ideological conversion of the working class to neoliberalism. Urban workers aren’t just victims, but agents of change and resistance to neoliberal logic,” he said.

“It’s also necessary to distinguish between the wish to work for oneself or be an entrepreneur and fully buying into ‘neoliberal reason’. Some of my interviewees did actually see entrepreneurship as a justification or even a romanticization of their precarious status in the labor market. Others considered entrepreneurship as a temporary or permanent solution to their need for flexible work hours or extra income. Lastly, there were some who wanted to find a new meaning in the idea of entrepreneurship, avoiding precariousness, personal dissatisfaction and degrading conditions in the labor market.”

According to Fontes, there are undoubtedly “elective affinities” between the values expressed by entrepreneurs on the periphery and so-called “neoliberal reason”, but he also detected elements of resistance and contestation, arguing that this complexity should be valued and sociologically analyzed.

About São Paulo Research Foundation (FAPESP)

The São Paulo Research Foundation (FAPESP) is a public institution with the mission of supporting scientific research in all fields of knowledge by awarding scholarships, fellowships and grants to investigators linked with higher education and research institutions in the State of São Paulo, Brazil. FAPESP is aware that the very best research can only be done by working with the best researchers internationally. Therefore, it has established partnerships with funding agencies, higher education, private companies, and research organizations in other countries known for the quality of their research and has been encouraging scientists funded by its grants to further develop their international collaboration. You can learn more about FAPESP at www.fapesp.br/en and visit FAPESP news agency at www.agencia.fapesp.br/en to keep updated with the latest scientific breakthroughs FAPESP helps achieve through its many programs, awards and research centers. You may also subscribe to FAPESP news agency at http://agencia.fapesp.br/subscribe.

 

Increased access to water a threat to nomadic livestock farmers


Peer-Reviewed Publication

UPPSALA UNIVERSITY

Professor Giuliano Di Baldassarre, Uppsala University 

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GIULIANO DI BALDASSARRE, PROFESSOR OF ENVIRONMENTAL ANALYSIS, DEPARTMENT OF EARTH SCIENCES, UPPSALA UNIVERSITY, AND DIRECTOR OF THE CENTRE OF NATURAL HAZARDS & DISASTER SCIENCE, EMAIL: giuliano.dibaldassarre@geo.uu.se , OFFICE PHONE: +46-18-471 71 62

 

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CREDIT: MIKAEL WALLERSTEDT




Increasing access to water in extremely arid parts of sub-Saharan Africa can help nomadic livestock farmers in the short term. However, in the long run it may lead to serious consequences for their livelihoods. This is shown by new research from Uppsala University, published in Nature Climate Change.

“When you increase access to water in arid areas, often as an urgent emergency measure, it becomes easier for livestock owners to stay there longer. However, that in turn increases the demand for water and pasture for their animals, to a level that isn’t there, and that risks having a severe impact on the population and reducing their resilience to drought and climate change,” says Giuliano Di Baldassarre, Professor of Environmental Analysis at Uppsala University.

Millions of farmers in sub-Saharan Africa are affected by drought, which often leads to water crises, famine and migration. Drought is particularly disastrous in drylands, which typically experience great variation in precipitation, with short rainy periods followed by dry spells lasting for months. The communities in these areas mostly consist of nomadic livestock farmers. Seasonal movements of herds are the traditional strategy used by nomadic livestock farmers around the world to deal with drought.

In recent times, initiatives to improve the water infrastructure in arid areas have become more common. One of the strategies is to make deep wells and boreholes to extract water. This is often an emergency measure to save the animals’ lives during drought.

In a new study, led by Uppsala University, researchers have investigated how the new sources of water affect nomadic communities. They have used qualitative methods of anthropological research in large arid areas in various African countries, and quantitative methods, such as data analysis and socio-hydrological modelling, in Angola.

In their research, the researchers have compared how the overall conditions in drylands look in terms of the extent of drought, access to water, soil conditions and population size. They have examined statistics from the years 1954–2018 on the boreholes, shallow and deep wells created, when they were made and for what purpose. Most of the water infrastructure created had multiple functions and was intended both for household use and for livestock and irrigation. During 2021, the researchers followed eight nomadic communities in Angola and conducted in-depth interviews with 24 focus groups.

The study shows that when access to water improves, thanks to new wells and boreholes, the need for water grows further. Both the human population and the livestock need more water, and the animals need more pasture.

“It is not possible to guarantee access to water and there is a risk of even greater problems for livestock farmers if they settle more permanently in one place. Our study shows that measures aimed solely at increasing the water supply, without effective management, risk threatening the resilience of nomadic communities to drought and climate change, and this is happening at a time when drought is expected to increase in many regions in the coming decades,” says Di Baldassarre.

 

Piemontese, L., Terzi, S., Di Baldassarre, G.,  Menestrey Schwieger, D.A., Castelli, G., and E. Bresci (2024). Over-reliance on water infrastructure can hinder climate resilience in pastoral drylands. Nature Climate Change, doi: 10.1038/s41558-024-01929-z, https://www.nature.com/articles/s41558-024-01929-z


 

High vaccination coverage key against expected increase of measles cases in the EU/EEA


In 2023, significant increases in the number of measles cases and outbreaks were observed globally, including in 40 of the 53 countries of the European region, and in at least ten EU/EEA countries


Reports and Proceedings

EUROPEAN CENTRE FOR DISEASE PREVENTION AND CONTROL (ECDC)

Incidence of measles cases (per million population) reported to TESSy by country, EU/EEA countries, 1 January 2023 to 31 December 2023 

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DURING THE PERIOD 1 JANUARY TO 31 DECEMBER 2023, THE NOTIFICATION RATE PER 1 MILLION POPULATION WAS HIGHEST IN ROMANIA (92.16), LIECHTENSTEIN (76.32), AUSTRIA (20.72), BELGIUM (5.94) AND ESTONIA (3.0).

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CREDIT: ECDC




Measles cases are expected to continue increasing in the European Union and European Economic Area (EU/EEA) in the coming months due to sub-optimal vaccination coverage for measles-containing vaccines (MCV) in a number of EU/EEA countries, the high probability of importation from areas experiencing high circulation and the fact that the coming months represent the seasonal peak of the virus.

The evaluation is included in a recent ECDC assessment Measles on the rise in the EU/EEA: Considerations for public health response. ECDC data show that in January and early February 2024, the number of EU/EEA countries reporting measles cases has increased. At least seven deaths have been reported from two countries.

Andrea Ammon, ECDC Director said: “Nobody should die from measles. The increase in cases of measles, a highly contagious, but vaccine-preventable disease, is a stark reminder that all Member States should maximise efforts to achieve and maintain high vaccination coverage for all vaccine-preventable diseases. Vaccines are a safe and effective way to reduce the health burden of infectious diseases and avoid unnecessary loss of life.” 

Measles poses a threat to individuals of all age groups, which highlights the importance of maintaining high vaccination coverage across the entire population. The highest potential impact of measles, due to the high morbidity following infection, is for infants too young to be immunised (usually those under the age of 12 months, depending on national schedules). Unvaccinated children under five years old are also at increased risk, as measles can have several complications in this age group. Additionally, other groups such as the immunocompromised are at risk of severe outcomes from measles. 

Stella Kyriakidesthe European Union Commisioner for Health and Food Safety, added: “The rising trend in measles cases across Europe is worrying. This is an extremely contagious disease which can cause serious complications, particularly for children and vulnerable persons. The good news is that it is a disease which is preventable through vaccination and that there are plenty of safe and effective vaccines available in the EU. When we see measles outbreaks, we know there is a gap in vaccinations. I urge everyone to check their vaccination status and parents to make sure their children and young person’s vaccines are up to date. Vaccination protects and saves lives, it is one of our strongest tools against measles and many other infectious diseases.”

Measles spreads very easily, therefore, high vaccination coverage of 95% or higher of the population vaccinated with two doses of the vaccine, is essential to interrupt transmission in a country or community. 

Efforts should therefore be intensified to identify and reach unvaccinated or partially vaccinated populations. Equity in access to immunisation should be ensured especially for vulnerable populations like migrants, ethnic minorities, and those who live in crowded settings e.g. refugee camps.

High-quality surveillance systems are essential for early detection, response, and control of local measles outbreaks. In addition, enhanced laboratory diagnostic capacity facilitates to track virus genotypes and identify transmission chains.

Raising awareness on the measles situation among health professionals across various specialties is important to ensure timely diagnosis, especially in older children and adults.

Efforts should be also made to identify the reasons for low vaccine uptake in communities and implement tailored interventions. These include risk communication and community-based initiatives, including towards underserved population groups.

ECDC remains committed to collaborate with EU/EEA countries and international partners to assist countries in increasing vaccination coverage and protect public health.

 

A scholar of the patient ‘revolution’ tracks the arc from powerlessness to influence in REBEL HEALTH


Susannah Fox provides an action-oriented & radically hopeful field guide to the underground, patient-led revolution for better health & health care

Book Announcement

THE MIT PRESS

Cover art to "Rebel Health" 

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COVER ART TO "REBEL HEALTH"

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CREDIT: THE MIT PRESS, 2024.




“In the age of rapid health advancements, Fox reminds us that no amount of tech can replace the support of others who have gone or are going through similar struggles—the relieving elixir of what she calls ‘just-in-time someone-like-me.’”
Esther Perel, psychotherapist; author of Mating in Captivity; host of Where Should We Begin

For Immediate Release

[Cambridge, MA, 2/16/2024] — Anyone who has fallen off the conveyer belt of mainstream health care and into the shadowy corners of illness knows what a dark place it is to land. Where is the infrastructure, the information, the guidance? What should you do next? In Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care (on sale 2/13/2024 from The MIT Press), Susannah Fox draws on twenty years of tracking the expert networks of patients, survivors, and caregivers who have come of age between the cracks of the health care system to offer a way forward.

Covering everything from diabetes to ALS to Moebius Syndrome to chronic disease management, Fox taps into the wisdom of these individuals, learns their ways, and fuels the rebel alliance that is building up our collective capacity for better health. Rebel Health shows how the next wave of health innovation will come from the front lines of this patient-led revolution. Fox identifies and describes four archetypes of this revolution: seekers, networkers, solvers, and champions. Each chapter includes tips, such as picking a proxy to help you navigate the relevant online communities, or learning how to pitch new ideas to investors and partners or new treatments to the FDA. On a personal level, anyone who wants to navigate the health care maze faster will want to become a health rebel or recruit some to their team. On a systemic level, it is a competitive advantage for businesses, governments, and organizations to understand and leverage the power of connection among patients, survivors, and caregivers.

Two groups of people will benefit from reading Rebel Health:

  1. Anyone who feels alone, forgotten, or lost in the shadows of suffering, whether they are navigating a new diagnosis or life with a chronic condition. Patients, survivors, and caregivers will learn new skills and how to deploy them for themselves and their loved ones.
  2. Anyone working inside health care who is fed up with the status quo. If they are ready to create positive change – improve health outcomes, keep people safe, find effective treatments, or bring better products and services to the market – they need new allies and strategies. Rebels are standing by to help.

Health care needs to invite the rebels inside, to connect them with the resources they need to test and scale their ideas. Rebel Health is a how-to guide. Proactive, optimistic, and innovative, Rebel Health is a guiding light for anyone who wishes to join the health rebel alliance and become the hero of their own story.

Author Q&A:

  1. What were the origins of writing Rebel Health? Could you discuss how you decided on the final format of this book?’

Early in my career researching the intersection of health and technology, a mentor told me to spend time in communities of people living with rare diseases and other life-changing diagnoses because they live on the frontiers of medicine. I discovered that these patients, survivors, and caregivers are the rebels of health care. They push boundaries, build new tools, and creatively get access to what they need to take care of themselves and their loved ones. Follow them and you will see the future, faster. It became clear that many more people could benefit from their example so I wrote this field guide as a way for people to gain the skills needed to be the hero of their own health story and for leaders to spot opportunities for investment.

2. You identify four different archetypes in Rebel Health: Seekers, Networkers, Solvers, and Champions. Could you explain the process of how you identified these archetypes?

People whose needs are not being met by mainstream health care react to adversity in a variety of ways. A glimmer of hope, like connection with a peer, can draw a patient out of despair and they set to work on a solution, together. Or a spark of intense frustration jolts a caregiver into action. I was curious about what happens next. What actions do they take?

Once I started looking for patterns, I was able to create categories of activities and motivations. I discerned three archetypes from the start: Seekers, who go on the hunt for answers; Networkers, who pool resources and learn in community; and Solvers, who attack problems and build tools. Champions, who fast-track innovations, emerged as an archetype as I got further into writing the book and recognized the importance of patient-led teams getting access to resources like funding, media attention, regulatory guidance, and materials.

3. One of the core tenets for the patient-led revolution is connection, especially through the internet. You also highlight the importance of being pro-social, not anti-science. How do you recommend patients navigate misinformation in self-care online forums?

Misinformation is a threat to our health as individuals and as a society. We need everyone to help stop its spread. People who are gathering, creating, and sharing health information peer-to-peer, both online and offline, should fact-check and cite their sources. That’s especially hard in a fast-moving situation like a global pandemic or a scary diagnosis but we have to try. Clinicians, researchers, policymakers, and journalists can help by making it easy to find and share facts. The patient-led revolution thrives when people have open access to medical journals and other industrial-strength information.

4. Towards the end of Rebel Health, you identify the need for health care leaders to open doors to patient advocates. If you could relay one message to executives, what would it be?

Seekers, Networkers, and Solvers stand ready to help you achieve your goals. Begin by listening to the needs they identify and find ways to align your mission with theirs. It is a competitive advantage to partner with patients, survivors, and caregivers.

5.  Rebel Health highlights the importance of caregivers in the patient-led revolution. How can health care providers ally themselves with caregivers in the patient-led revolution?

Health care leaders should identify and support caregivers in both their customer and their employee populations. In the care economy, if these essential, unpaid workers wobble, we all fall. Caregivers are also inventive. Companies and investors looking for new product and service ideas should partner with and learn from caregivers, who are innovating every day to make life better for their loved ones.

6. One of the most fascinating aspects of your book is the anecdotes with real-life Seekers, Networkers, Solvers, and Champions. What were some key familiar themes that you saw across your interviews and case studies?

Finding a “just-in-time someone-like-you” to console and advise you is a priceless treasure. This is true whether you are dealing with a common, even welcome, situation like a healthy pregnancy, or a life-limiting diagnosis like cystic fibrosis or ALS. Across every community and condition, people find it useful to learn from peers on the same path.

Courage is another recurring theme. It takes bravery to raise your hand and say, “I need help” or “I have an idea.” But it is the first step to getting access to what you need to solve a problem.  Everyone, whether they are a Seeker, Networker, Solver, or Champion, has to fight through doubt and take that first step.

7. This book is a field guide, and each chapter highlights tips for the four archetypes. It’s dynamic and made to be used. What is your hope for readers walking away from your book and into health care facilities?

I want everyone to step into their power as change agents. If your questions are not being answered, learn the ways of Seekers and go on the hunt. If you see a device or system that does not work the way it should, think like a Solver and start looking for ways to fix it. If you feel alone, find the Networkers. If you are in a position of influence and spot a patient-led team doing great work, be a Champion and help them scale. Everyone has the opportunity to join the revolution for better medical care.

Endorsements:
“Susannah Fox makes visible the experience and wisdom of remarkable patients who are creating solutions and setting new standards for what is possible in health care, providing inspiration for all seeking better health.”
Harlan M. Krumholz, Harold H. Hines Jr. Professor of Medicine, Yale School of Medicine
 
“Through Susannah Fox’s unique framework of four patient archetypes, she shines a light on the ingenuity that arises when people collectively leverage their lived experiences to change the status quo, giving us hope for the continuation of a patient-led revolution.”
Gina Assaf and Lisa McCorkell, cofounders of Patient-Led Research Collaborative
 
“Susannah Fox teaches us how the best path to improving care is to rebel! Rebel Health is a crucial look at how patient communities can make the difference when the medical field ignores their concerns.”
Andy Slavitt, General Partner, Town Hall Ventures; author of Preventable

Rebel Health is a wonderful testament and practical guide to the way people can come together and tap into their collective resilience to address health challenges. Susannah Fox writes with great wisdom and depth about how the different actors (Seekers, Networkers, Solvers, and Champions) work together to promote innovative patient-led solutions to previously unrecognized health needs.”
Jack Saul, author of Collective Trauma, Collective Healing: Promoting Community Resilience in the Aftermath of Disaster

“Navigating the health care system can feel overwhelming for anyone recently diagnosed with a disease and for health care professionals trying to give excellent care to their patients. A revolution is brewing, and no one is more qualified than Susannah Fox to lead it. Rebel Health is an inspiring and empowering field guide for transforming American medicine into true health care. Highly recommended!”  
Dean Ornish, New York Times bestselling author of UnDo It!; Founder and President, Preventive Medicine Research Institute; Clinical Professor of Medicine, University of California, San Francisco

Photo of author Susannah Fox.

CREDIT

Cory Hancock

About the author:

Susannah Fox helps people navigate health and technology. She served as Chief Technology Officer for the US Department of Health and Human Services, where she led an open data and innovation lab. Prior to that, she was the entrepreneur-in-residence at the Robert Wood Johnson Foundation and directed the health portfolio at the Pew Research Center’s Internet Project. https://susannahfox.co

 

Electrification or hydrogen? Both have distinct roles in the European energy transition


Peer-Reviewed Publication

POTSDAM INSTITUTE FOR CLIMATE IMPACT RESEARCH (PIK)




“Previous research has shown that our power system can be transformed to renewable sources like wind and solar at low cost and low environmental impact. However, the next question is how this renewable electricity can be used to substitute fossil fuel use in the buildings, industry and transport sectors. Our analysis shows that the direct use of electricity, for example, via electric cars and heat pumps, is critical for a broad range of sectors, while the conversion of electricity to hydrogen is important only for few applications,” says Felix Schreyer, PIK scientist and lead author of the study.

The study, published in 'One Earth', is the first to analyse the interplay of electrification and hydrogen in EU climate neutrality scenarios at greater sectoral detail. The analysis shows higher potentials for electrification and identifies a more confined deployment range for hydrogen-based energy than earlier studies. Using the energy-economy model REMIND, PIK-scientists investigated plausible combinations of both strategies in EU energy system transformation pathways under different scenario assumptions. They found that, across scenarios, direct electrification is the dominant strategy for passenger cars and low-temperature heating in buildings and industry, while hydrogen and synthetic fuels produced from electricity are needed primarily for aviation, shipping, the chemical industry and as electricity storage. Hence, electrification and hydrogen are largely complementary, while they compete for a small share of only about 15% of final energy. These uncertain segments include sectors like truck transport and high-temperature industrial process heat.

Three cornerstones for a successful transformation: Advancing the expansion of renewables, removing obstacles and providing incentives

“Ramping up renewable electricity supply and switching to electric technologies wherever possible is by far the fastest and cheapest way of eliminating carbon emissions in most sectors. We therefore expect the share of electricity in final energy to increase from 20% to 42-60%,” says co-author Gunnar Luderer, leader of the Energy Systems Group at PIK. This is because electric technologies are increasingly available and use electricity very efficiently, while the conversion to hydrogen and synthetic fuels and their combustion come with significant energy losses. Overall, EU electricity demand increases across their scenarios by 80-160% in 2050 depending on the amount of hydrogen imports and the role of electrification and hydrogen in uncertain sectors. This means that around twice as much power as today will have to be produced by then.

The authors also discuss the current state of EU policy with regards to electrification and hydrogen and outline three critical cornerstones for a successful transformation: Policy-making should 1) prioritise electrification and hydrogen respectively in sectors where they are preferred across all scenarios, 2) remove barriers to renewable power expansion and 3) incentivize the scale-up of hydrogen supply chains.

“Our study highlights that policymakers should respect the different sectoral roles of both strategies: By promoting electrification via electric applications for road transport and heating while prioritising hydrogen and synthetic fuels for applications where they are indispensable,” says PIK scientist and co-author Falko Ueckerdt.

 

Widely used machine learning models reproduce dataset bias in Rice study


High-income communities overrepresented in relevant datasets for immunotherapy research


Peer-Reviewed Publication

RICE UNIVERSITY





HOUSTON – (Feb. 16, 2024) – Rice University computer science researchers have found bias in widely used machine learning tools used for immunotherapy research.

Ph.D. students Anja Conev, Romanos Fasoulis and Sarah Hall-Swan, working with computer science faculty members Rodrigo Ferreira and Lydia Kavraki, reviewed publicly available peptide-HLA (pHLA) binding prediction data and found it to be skewed toward higher-income communities. Their paper examines the way that biased data input affects the algorithmic recommendations being used in important immunotherapy research.

Peptide-HLA binding prediction, machine learning and immunotherapy

HLA is a gene in all humans that encodes proteins working as part of our immune response. Those proteins bind with protein chunks called peptides in our cells and mark our infected cells for the body’s immune system, so it can respond and, ideally, eliminate the threat.

Different people have slightly different variants in genes, called alleles. Current immunotherapy research is exploring ways to identify peptides that can more effectively bind with the HLA alleles of the patient.

The end result, eventually, could be custom and highly effective immunotherapies. That is why one of the most critical steps is to accurately predict which peptides will bind with which alleles. The greater the accuracy, the better the potential efficacy of the therapy.

But calculating how effectively a peptide will bind to the HLA allele takes a lot of work, which is why machine learning tools are being used to predict binding. This is where Rice’s team found a problem: The data used to train those models appears to geographically favor higher-income communities.

Why is this an issue? Without being able to account for genetic data from lower-income communities, future immunotherapies developed for them may not be as effective.

“Each and every one of us has different HLAs that they express, and those HLAs vary between different populations,” Fasoulis said. “Given that machine learning is used to identify potential peptide candidates for immunotherapies, if you basically have biased machine models, then those therapeutics won’t work equally for everyone in every population.”

Redefining ‘pan-allele’ binding predictors

Regardless of the application, machine learning models are only as good as the data you feed them. A bias in the data, even an unconscious one, can affect the conclusions made by the algorithm.

Machine learning models currently being used for pHLA binding prediction assert that they can extrapolate for allele data not present in the dataset those models were trained on, calling themselves “pan-allele” or “all-allele.” The Rice team’s findings call that into question.

“What we are trying to show here and kind of debunk is the idea of the ‘pan-allele’ machine learning predictors,” Conev said. “We wanted to see if they really worked for the data that is not in the datasets, which is the data from lower-income populations.”

Fasoulis’ and Conev’s group tested publicly available data on pHLA binding prediction, and their findings supported their hypothesis that a bias in the data was creating an accompanying bias in the algorithm. The team hopes that by bringing this discrepancy to the attention of the research community, a truly pan-allele method of predicting pHLA binding can be developed.

Ferreira, faculty advisor and paper co-author, explained that the problem of bias in machine learning can’t be addressed unless researchers think about their data in a social context. From a certain perspective, datasets may appear as simply “incomplete,” but making connections between what is or what is not represented in the dataset and underlying historical and economic factors affecting the populations from which data was collected is key to identifying bias.

“Researchers using machine learning models sometimes innocently assume that these models may appropriately represent a global population,” Ferreira said, “but our research points to the significance of when this is not the case.” He added that “even though the databases we studied contain information from people in multiple regions of the world, that does not make them universal. What our research found was a correlation between the socioeconomic standing of certain populations and how well they were represented in the databases or not.”

Professor Kavraki echoed this sentiment, emphasizing how important it is that tools used in clinical work be accurate and honest about any shortcomings they may have.

“Our study of pHLA binding is in the context of personalized immunotherapies for cancer — a project done in collaboration with MD Anderson,” Kavraki said. “The tools developed eventually make their way to clinical pipelines. We need to understand the biases that may exist in these tools. Our work also aims to alert the research community on the difficulties of obtaining unbiased datasets.”

Conev noted that, though biased, the fact that the data was publicly available for her team to review was a good start. The team is hoping its findings will lead new research in a positive direction — one that includes and helps people across demographic lines.

Ferreira is an assistant teaching professor of computer science. Kavraki is the Noah Harding Professor of Computer Science, a professor of bioengineering, electrical and computer engineering and director of the Ken Kennedy Institute for Information Technology.

The research was supported by the National Institutes of Health (U01CA258512) and Rice University.

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This release was authored by John Bogna and can be found online at news.rice.edu.

Follow Rice News and Media Relations via Twitter @RiceUNews.

Peer-reviewed paper:

HLAEquity: Examining biases in pan-allele peptide-HLA binding predictors | iScience | DOI: 10.1016/j.isci.2023.108613

Authors: Anja Conev, Romanos Fasoulis, Sarah Hall-Swan, Rodrigo Ferreira and Lydia Kavraki

https://www.cell.com/iscience/fulltext/S2589-0042(23)02690-1?_returnURL=https%3A%2F%2Flinkinghub.elsevier.com%2Fretrieve%2Fpii%2FS2589004223026901%3Fshowall%3Dtrue

Image downloads:

https://news-network.rice.edu/news/files/2024/02/pHLA-1-76111b2f602ee562.jpg
CAPTION: Lydia Kavraki (top row, left), Rodrigo Ferreira (top row, right), Romanos Fasoulis (bottom row, from left), Sarah Hall-Swan and Anja Conev (Rice University)

Links:

Department of Computer Science: https://csweb.rice.edu/
Department of Bioengineering: https://bioengineering.rice.edu/
Department of Electrical and Computer Engineering: https://eceweb.rice.edu/
Department of Mechanical Engineering: https://mech.rice.edu/
George R. Brown School of Engineering: https://engineering.rice.edu/
The Ken Kennedy Institute: https://kenkennedy.rice.edu/
Kavraki Lab: https://www.kavrakilab.org/

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