Crowdsourcing Site Works to Detect Spread of Zika

Curated on Posted on by Stefaan Verhulst

Suzanne Tracy at Scientific Computing Source: “Last month, the Flu Near You crowdsourcing tool expanded its data collection to include Zika, chikungunya and dengue symptoms, such as eye pain, yellow skin/eyes and joint/bone pain. Flu Near You is a free and anonymous Web site and mobile application that allows the public to report their health information by completing brief weekly surveys.

Created by epidemiologists at Harvard, Boston Children’s Hospital and The Skoll Global Threats Fund, the novel participatory disease surveillance tool is intended to complement existing surveillance systems by directly engaging the public in public health reporting. As such, it relies on voluntary participation from the general public, asking participants to take a few seconds each week to report whether they or their family members have been healthy or sick.

Using participant-reported symptoms, the site graphs and maps this information to provide local and national views of illness. Thousands of reports are analyzed and mapped to provide public health officials and researchers with real-time, anonymous information that could help prevent the next pandemic.

The survey, which launched in 2011, is conducted year-round for several reasons.

  • First, it is possible for an influenza outbreak to occur outside of the traditional flu season. For instance, the first wave of pandemic H1N1 hit in the spring of 2009. The project wants to capture any emerging outbreak, should something similar occur again.
  • Second, the project’s symptoms-based health forms allow it to monitor other diseases, such as the recently-added Zika, chikungunya and dengue, which may have different seasons than influenza….(More)

See also: http://flunearyou.org and video: Fight the flu. Save lives

Don’t know where to go when the volcano blows? Crowdsource it.

Curated on Posted on by Stefaan Verhulst

Anne Frances Johnson in ThrivingEarthExchange: “In the shadow of a rumbling volcano, Quito, Ecuador solicits just-in-time advice from the world’s disaster experts…

Cotopaxi’s last large-scale eruption was in 1877, and the volcano’s level of activity suggests another one is inevitable. In addition to spewing lava, a major eruption would melt Cotopaxi’s glaciers and send a large flow of material barreling down the mountain, posing an immediate risk to people and potentially causing rivers to overflow their banks. Some 120,000 people living in the valley beneath the volcano would have a mere 12 minutes to escape the lava’s path, and more than 325,000 other area residents would have only slightly more time to evacuate. An eruption could also create significant long-term challenges across a broad area, including dangerous air quality and disruptions to infrastructure, food systems and water supplies.

As danger looms, a city gets coaching from the crowd

Aware that the city was underprepared for a significant eruption, The Governance Lab, a program of the New York University Tandon School of Engineering, volunteered its time and expertise to help local officials accelerate preparation efforts. The GovLab, which helps governments and other institutions work collaboratively to solve problems, teamed up with Linq, the city’s innovation agency.

“We were very aware that this was a time-sensitive matter—we needed experts, and we needed them fast,” explained Dinorah Cantú-Pedraza, a human rights lawyer and Research Fellow at The GovLab who collaborated on the project. “So that’s why we decided to create online sessions focused on how innovations can solve specific problems facing the city.”…

GovLab’s “fail-fast, learn-by-doing” approach is crucial to its projects’ success in remaining responsive to the problems at hand. “That was a central element in how we worked with our partners and improved the approach as we went forward,” said Cantú-Pedraza.

To help translate the Cotopaxi crowdsourcing model for other circumstances, GovLab is working to build a network of innovators and experts that can be tapped on short notice to address problems as they emerge around the world. Although we can hope for the best in Quito and elsewhere, the reality is that we must plan for the worst…(More)

How tech is forcing firms to be better global citizens

Curated on Posted on by Stefaan Verhulst

Catherine Lawson at the BBC: “…technology is forcing companies to up their game and interact with communities more directly and effectively….

Platforms such as Kritical Mass have certainly given a fillip to the idea of crowd-supported philanthropy, attracting individuals and corporate sponsors to its projects, whether that’s saving vultures in Kenya or bringing solar power to rural communities in west Africa.

Sponsors can offer funding, volunteers, expertise or marketing. So rather than imposing corporate ideas of “do-gooding” on communities in a patronising manner, firms can simply respond to demand.

HelpfulPeeps has pushed its volunteering platform into more than 40 countries worldwide, connecting people who want to share their time, knowledge and skills with each other for free.

In the UK, online platform Neighbourly connects community projects and charities with companies and people willing to volunteer their resources. For example, Starbucks has pledged 2,500 days of volunteering and has so far backed 70 community projects….

Judging by the strong public appetite for supporting good causes and campaigning against injustice on sites such as Change.org, Avaaz.org, JustGiving andGoFundMe, his assessment appears to be correct.

And LinkedIn says millions of members have signalled on their profiles that they want to serve on a non-profit board or use their skills to volunteer….

Tech companies in particular are offering expertise and skills to good causes as way of making a tangible difference.

For example, in January, Microsoft announced that through its new organisation,Microsoft Philanthropies, it will donate $1bn-worth (£700m) of cloud computing resources to serve non-profits and university researchers over the next three years…

And data analytics specialist Applied Predictive Technologies (APT) has offered its data-crunching skills to help the Capital Area Food Bank charity distribute food more efficiently to hungry people around the Washington DC area.

APT used data to develop a “hunger heat map” to help CAFB target resources and plan for future demand better.

In another project, APT helped The Cara Program – a Chicago-based charity providing training and job placements to people affected by homelessness or poverty – evaluate what made its students more employable….

And Launch, an open platform jointly founded by Nasa, Nike, the US Agency for International Development, and the US Department of State aims to provide support for start-ups and “inspire innovation”.

In the age of internet transparency, it seems corporates no longer have anywhere to hide – a spot of CSR whitewashing is not going to cut it anymore….(More)”.

Research and Evaluation of Participatory Budgeting in the U.S. and Canada

Curated on Posted on by Stefaan Verhulst

Public Agenda: “Communities across the country are experimenting with participatory budgeting (PB), a democratic process in which residents decide together how to spend part of a public budget. Learning more about how these community efforts are implemented and with what results will help improve and expand successful forms of participatory budgeting across the U.S. and Canada.

Public Agenda is supporting local evaluation efforts and sharing research on participatory budgeting. Specifically, we are:

  • Building a community of practice among PB evaluators and researchers.
  • Working with evaluators and researchers to make data and research findings comparable across communities that use participatory budgeting.
  • Developing key metrics and research tools to help evaluate participatory budgeting (download these documents here).
  • Publishing a “Year in Participatory Budgeting Research” review based on data, findings, experiences and challenges from sites in the U.S. and Canada.
  • Conducting original, independent research on elected officials’ views of and experiences with participatory budgeting.
  • Convening the North American Participatory Budgeting Research Board.

…Below, you will find evaluation tools and resources we developed in close collaboration with PB evaluators and researchers in the U.S. and Canada. We also included the local evaluation reports from communities around the U.S. and Canada using PB in budget decisions.

To be the first to hear about new PB resources and news, join our email list. We also invite you to email us to join our listserv and participate in discussion about evaluation and research of participatory budgeting in the U.S. and Canada.

New to PB and looking to introduce it to your community? You should start here instead! Once your PB effort is under way, come back to this page for tools to evaluate how you’re doing.

15 Key Metrics for Evaluating Participatory Budgeting: A Toolkit for Evaluators and Implementers

Evaluation is a critical component of any PB effort. Systematic and formal evaluation can help people who introduce, implement, participate in or otherwise have a stake in PB understand how participatory budgeting is growing, what its reach is, and how it’s impacting the community and beyond.

We developed the 15 Key Metrics for Evaluating Participatory Budgeting toolkit for people interested in evaluating PB efforts in their communities. It is meant to encourage and support some common research goals across PB sites and meaningfully inform local and national discussions about PB in the U.S. and Canada. It is the first iteration of such a toolkit and especially focused on providing practical and realistic guidance for the evaluation of new and relatively new PB processes.

Anyone involved in public engagement or participation efforts other than participatory budgeting may also be interested in reviewing the toolkit for research and evaluation ideas.

The toolkit requires registration before you can download.

The toolkit includes the following sections:

15 Key Metrics for Evaluating Participatory Budgeting: 15 indicators (“metrics”) that capture important elements of each community-based PB process and the PB movement in North America overall. Click here for a brief description of these metrics….(More)”

The Opportunity Project: Utilizing Open Data to Build Stronger Ladders of Opportunity for All

Curated on Posted on by Stefaan Verhulst

White House Factsheet: “In the lead up to the President’s historic visit to SxSW, today the Administration is announcing the launch of “The Opportunity Project,” a new open data effort to improve economic mobility for all Americans. As the President said in his State of the Union address, we must harness 21st century technology and innovation to expand access to opportunity and tackle our greatest challenges.

The Opportunity Project will put data and tools in the hands of civic leaders, community organizations, and families to help them navigate information about critical resources such as access to jobs, housing, transportation, schools, and other neighborhood amenities. This project is about unleashing the power of data to help our children and our children’s children access the resources they need to thrive. Today, the Administration is releasing a unique package of Federal and local datasets in an easy-to-use format and accelerating a new way for the federal government to collaborate with local leaders, technologists, and community members to use data and technology to tackle inequities and strengthen their communities.

Key components of this announcement include:

·         The launch of “The Opportunity Project” and Opportunity.Census.gov to provide easy access to the new package of Opportunity Project data, a combination of Federal and local data, on key assets that determine access to opportunity at the neighborhood level. This data can now be used by technologists, community groups, and local governments in order to help families find affordable housing, help businesses identify services they need, and help policymakers see inequities in their communities and make investments to expand fair housing and increase economic mobility.

·         The release of a dozen new private sector and non-profit digital tools that were built in collaboration with eight cities and using the Opportunity Project data to help families, local leaders, advocates, and the media navigate information about access to jobs, housing, transportation, schools, neighborhood amenities, and other critical resources. Participating cities include Baltimore, Detroit, Kansas City, MO, New Orleans, New York, Philadelphia, San Francisco, and Washington, D.C., as well as organizations and companies such as Redfin, Zillow, GreatSchools, PolicyLink andStreetwyze.

·         More than thirty additional non-profits, community organizations, coding boot camps, academic institutions, and local governments have already committed to use the Opportunity Project data to build stronger ladders of opportunity in communities across the country.

·         The Administration is issuing a Call to Action to the public to develop new tools, offer additional sources of data, deepen community engagement through the use of the data, and other actions. We want to hear about what new steps you are taking or programs you are implementing to address these topics.

This project represents an important continuation of how the Federal government is working with communities and technologists to enhance the power of open data by making it more accessible to a wide variety of users across the country, and by facilitating collaborations between software developers and community members to build digital tools that make it easier for communities and families to solve their greatest challenges….(More)”

Community Engagement Matters (Now More Than Ever)

Curated on Posted on by Stefaan Verhulst

Melody Barnes & Paul Schmitz at Stanford Social Innovation Review: “…Data-driven and evidence-based practices present new opportunities for public and social sector leaders to increase impact while reducing inefficiency. But in adopting such approaches, leaders must avoid the temptation to act in a top-down manner. Instead, they should design and implement programs in ways that engage community members directly in the work of social change. …

Under the sponsorship of an organization called Results for America, we recently undertook a research project that focused on how leaders can and should pursue data-driven social change efforts. For the project, we interviewed roughly 30 city administrators, philanthropists, nonprofit leaders, researchers, and community builders from across the United States. We began this research with a simple premise: Social change leaders now have an unprecedented ability to draw on data-driven insight about which programs actually lead to better results.

Leaders today know that babies born to mothers enrolled in certain home visiting programs have healthier birth outcomes. (The Nurse-Family Partnership, which matches first-time mothers with registered nurses, is a prime example of this type of intervention.3) They know that students in certain reading programs reach higher literacy levels. (Reading Partners, for instance, has shown impressive results with a program that provides one-on-one reading instruction to struggling elementary school students.4) They know that criminal offenders who enter job-training and support programs when they leave prison are less likely to re-offend and more likely to succeed in gaining employment. (The Center for Employment Opportunities has achieved such outcomes by offering life-skills education, short-term paid transitional employment, full-time job placement, and post-placement services.5)

Results for America, which launched in 2012, seeks to enable governments at all levels to apply data-driven approaches to issues related to education, health, and economic opportunity. In 2014, the organization published a book called Moneyball for Government. (The title is a nod to Moneyball, a book by Michael Lewis that details how the Oakland A’s baseball club used data analytics to build championship teams despite having a limited budget for player salaries.) The book features contributions by a wide range of policymakers and thought leaders (including Melody Barnes, a co-author of this article). The editors of Moneyball for Government, Jim Nussle and Peter Orszag, outline three principles that public officials should follow as they pursue social change:

  • “Build evidence about the practices, policies, and programs that will achieve the most effective and efficient results so that policymakers can make better decisions.
  • “Invest limited taxpayer dollars in practices, policies, and programs that use data, evidence, and evaluation to demonstrate they work.
  • “Direct funds away from practices, policies, and programs that consistently fail to achieve measurable outcomes.”6

These concepts sound simple. Indeed, they have the ring of common sense. Yet they do not correspond to the current norms of practice in the public and nonprofit sectors. According to one estimate, less than 1 percent of federal nondefense discretionary spending goes toward programs that are backed by evidence. In a 2014 report, Lisbeth Schorr and Frank Farrow note that the influence of evidence on decision-making—“especially when compared to the influence of ideology, politics, history, and even anecdotes”—has been weak among policymakers and social service providers. (Schorr is a senior fellow at the Center for the Study of Social Policy, and Farrow is director of the center.)

That needs to change. There is both an economic and a moral imperative for adopting data-driven approaches. Given persistently limited budgets, public and nonprofit leaders must direct funds to programs and initiatives that use data to show that they are achieving impact. Even if unlimited funds were available, moreover, leaders would have a responsibility to design programs that will deliver the best results for beneficiaries….

The Need for “Patient Urgency”

The inclination to move fast in creating and implementing data-driven programs and practices is understandable. After all, the problems that communities face today are serious and immediate. People’s lives are at stake. If there is evidence that a particular intervention can (for example) help more children get a healthy start in life—or help them read at grade level, or help them develop marketable skills—then setting that intervention in motion is pressingly urgent.

But acting too quickly in this arena entails a significant risk. All too easily, the urge to initiate programs expeditiously translates into a preference for top-down forms of management. Leaders, not unreasonably, are apt to assume that bottom-up methods will only slow the implementation of programs that have a record of delivering positive results.

A former director of data and analytics for a US city offers a cautionary tale that illustrates this idea. “We thought if we got better results for people, they would demand more of it,” she explains. “Our mayor communicated in a paternal way: ‘I know better than you what you need. I will make things better for you. Trust me.’ The problem is that they didn’t trust us. Relationships matter. Not enough was done to ask people what they wanted, to honor what they see and experience. Many of our initiatives died—not because they didn’t work but because they didn’t have community support.”

To win such support, policymakers and other leaders must treat community members as active partners. “Doing to us, not with us, is a recipe for failure,” says Fuller, who has deep experience in building community-led coalitions. “If we engage communities, then we have a solution and we have the leadership necessary to demand that solution and hold people accountable for it.” Engaging a community is not an activity that leaders can check off on a list. It’s a continuous process that aims to generate the support necessary for long-term change. The goal is to encourage intended beneficiaries not just to participate in a social change initiative but also to champion it.

“This work takes patient urgency,” Fuller argues. “If you aren’t patient, you only get illusory change. Lasting change is not possible without community. You may be gone in 5 or 10 years, but the community will still be there. You need a sense of urgency to push the process forward and maintain momentum.” The tension between urgency and patience is a productive tension. Navigating that tension allows leaders and community members to achieve the right level of engagement.

Rich Harwood, president of the Harwood Institute for Public Innovation, makes this point in a post on his website: “Understanding and strengthening a community’s civic culture is as important to collective efforts as using data, metrics and measuring outcomes. … A weak civic culture undermines the best intentions and the most rigorous of analyses and plans. For change to happen, trust and community ownership must form, people need to engage with one another, and we need to create the right underlying conditions and capabilities for change to take root and spread.”…(More)

Visualizing Potential Outbreaks of the Zika Virus

Curated on Posted on by Stefaan Verhulst

Google’s Official Blog: “The recent Zika virus outbreak has caused concern around the world. We’ve seen more than a 3,000 percent increase in global search interest since November, and last month, the World Health Organization (WHO) declared a Public Health Emergency. The possible correlation with Zika, microcephaly and other birth defects is particularly alarming.

But unlike many other global pandemics, the spread of Zika has been harder to identify, map and contain. It’s believed that 4 in 5 people with the virus don’t show any symptoms, and the primary transmitter for the disease, the Aedes mosquito species, is both widespread and challenging to eliminate. That means that fighting Zika requires raising awareness on how people can protect themselves, as well as supporting organizations who can help drive the development of rapid diagnostics and vaccines. We also have to find better ways to visualize the threat so that public health officials and NGO’s can support communities at risk….

A volunteer team of Google engineers, designers, and data scientists is helping UNICEF build a platform to process data from different sources (i.e., weather and travel patterns) in order to visualize potential outbreaks. Ultimately, the goal of this open source platform is to identify the risk of Zika transmission for different regions and help UNICEF, governments and NGO’s decide how and where to focus their time and resources. This set of tools is being prototyped for the Zika response, but will also be applicable to future emergencies….

We already include robust information for 900+ health conditions directly on Search for people in the U.S. We’ve now also added extensive information about Zika globally in 16 languages, with an overview of the virus, symptom information, and Public Health Alerts from that can be updated with new information as it becomes available.

We’re also working with popular YouTube creators across Latin America, including Sesame Street and Brazilian physician Drauzio Varella, to raise awareness about Zika prevention via their channels.

We hope these efforts are helpful in fighting this new public health emergency, and we will continue to do our part to help combat this outbreak.

And if you’re curious about what that 3,000 percent search increase looks like, take a look:….(More)

Ideas Help No One on a Shelf. Take Them to the World

Curated on Posted on by Stefaan Verhulst

Tina Rosenberg at The New York Times: “Have you thought of a clever product to mitigate climate change? Did you invent an ingenious gadget to light African villages at night? Have you come up with a new kind of school, or new ideas for lowering the rate of urban shootings?

Thanks, but we have lots of those.

Whatever problem possesses you, we already have plenty of ways to solve it. Many have been rigorously tested and have a lot of evidence behind them — and yet they’re sitting on a shelf.

So don’t invent something new. If you want to make a contribution, choose one of those ideas — and spread it.

Spreading an idea can mean two different things. One is to take something that’s working in one place and introduce it somewhere else. If you want to reduce infant mortality in Cleveland, why not try what’s working in Baltimore?

Well, you might not know about what’s working because there’s no quick system for finding it.

Even when a few people do search out the answer, innovative ideas don’t spread by themselves. To become well known, they require effort from their originators. For example, a Bogotá, Colombia, maternity hospital invented Kangaroo Care — a method of keeping premature babies warm by strapping them 24/7 to Mom’s chest. It saved a lot of lives in Bogotá. But what allowed it to save lives around the world was a campaign to spread it to other countries.

The Colombians established Fundación Canguro and got grants from wealthy countries to bring groups of doctors and nurses from all over to visit Bogotá for two or three weeks.  Once the visitors had gone back and set up a program in their hospital, the foundation loaned them a doctor and nurse to help get them started. Save the Children now leads a global partnership to spread Kangaroo Care, with the goal of reaching half the world.

In short, this work requires dedicated organizations, a smart program and lots of money.

The other meaning of spreading an idea is creating ways to get new inventions out to people who need them.

“When I talk to college students or anyone who’s thinking about entrepreneurship or targeting global poverty, the gadget is where 99 percent of people start thinking,” said Nicholas Fusso, the director of D-Prize (its slogan: “Distribution is development”).  “That’s important — but the biggest problems in the poverty world aren’t a lack of gadgets or new products. It’s figuring out how people can have access to them.” So D-Prize gives seed money, in chunks of $10,000 to $20,000, to tiny new organizations that have good ideas for how to distribute useful things.

This analysis may be familiar to regular readers of Fixes. Indeed, the first Fixes column, more than five years ago, focused on distribution: getting health care to people in rural Africa by putting health care workers on motorcycles and keeping the bikes running….

Philanthropists and government aid agencies are only starting to get interested in the challenges of distribution — one new philanthropy that does have this focus is Good Ventures. As for academia, it still rewards invention almost exclusively. “There’s a lot of attention and award-giving and prize-giving and credit to people who come up with fancy new ideas instead of reaching people and having impact,” said Brodbar. “The incentives aren’t aligned. The culture of social entrepreneurship needs to change.”

Recognizing the true value of spreading an idea would also allow people who aren’t inventors (which is most of us) to get involved in social change. “The notion that if you want to engage in [social entrepreneurship] you have to have the big idea does a disservice to this space and people who want to play a role in it,” said Brodbar. “It’s a much wider front door.”…(More)

In Peru, trackable vultures are helping authorities find illegal garbage dumps

Curated on Posted on by Stefaan Verhulst

Springwise: “Peru’s black vultures are well known locally for their natural aptitude for garbage location. They don’t have to search too hard, since much of the garbage produced by the city of Lima is dumped illegally and ends up in the Pacific ocean. Now, the Ministry of the Environment has launched the Gallinazo Avisa campaign — meaning Vultures Warn — to clean up the city. It is using the vultures to its advantage, by fitting a flock of them with GoPros, which collect real-time GPS data, and enable the people to find the illegal dumps across the city.

The scheme is being run with the help of the Museum of Natural History and a local university, who had already tagged vultures to understand their seasonal movements. Each of the birds has been given a name and character, and their movements can be followed in real-time through an interactive map. Promotional videos have been created, which place the vultures in a filmic narrative as misunderstood heroes. Not only does the GPS data enable the location of garbage, the footage collected is also having a two-fold effect. First, it is educating the citizens about the repercussions of illegal dumping, and second, it is improving the reputation of the vultures by transforming them into allies of the people….(More)

vulturewarn-1-garbage-animal-bird-data-location

 

Meet your Matchmaker: New crowdsourced sites for rare diseases

Curated on Posted on by Stefaan Verhulst

Carina Storrs at CNN: “Angela’s son Jacob was born with a number of concerning traits. He had an extra finger, and a foot and hip that were abnormally shaped. The doctors called in geneticists to try to diagnose his unusual condition. “That started our long, 12-year journey,” said Angela, who lives in the Baltimore area.

As geneticists do, they studied Jacob’s genes, looking for mutations in specific regions of the genome that could point to a problem. But there were no leads.

In the meantime, Jacob developed just about every kind of health problem there is. He has cognitive delays, digestive problems, muscle weakness, osteoporosis and other ailments.

“It was extremely frustrating, it was like being on a roller coaster. You wait six to eight weeks for the (gene) test and then it comes back as showing nothing,” recalled Angela, who asked that their last name not be used to protect her son’s privacy. “How do we go about treating until we get at what it is?”

Finally a test last year, which was able to take a broad look at all of Jacob’s genes, revealed a possible genetic culprit, but it still did not shed any light on his condition. “Nothing was known about the gene,” said Dr. Antonie Kline, director of pediatric genetics at the Greater Baltimore Medical Center, who had been following Jacob since birth.

Fortunately, Kline knew about an online program called GeneMatcher, which launched in December 2013. It would allow her to enter the new mystery gene into a database and search for other clinicians in the world who work with patients who have mutations in the same gene….

the search for “someone else on the planet” can be hard, Hamosh said. The diseases in GeneMatcher are rare, affecting fewer than 200,000 people in the United States, and it can be difficult for clinicians with similar patients to find each other just through word of mouth and professional connections. Au, the Canadian researcher with a patient similar to Jacob, is actually a friend of Kline’s, but the two had never realized their patients’ similarities.

It was not just Hamosh and her colleagues who were struck by the need for something like GeneMatcher. At the same time they were developing their program, researchers in Canada and the UK were creating PhenomeCentral and Decipher, respectively.

The three are collectively known as matchmaker programs. They connect patients with rare diseases which clinicians may never have seen before. In the case of PhenomeCentral, however, clinicians do not have to have a genetic culprit and can search only for other patients with similar traits or symptoms.

In the summer of 2015, it got much easier for clinicians all over the world to use these programs, when a clearinghouse site called Matchmaker Exchange was launched. They can now enter the patient information one time and search all three databases….(More)

“