How Medical Crowdsourcing Empowers Patients & Doctors

Curated on Posted on by Stefaan Verhulst

Rob Stretch at Rendia: “Whether you’re a solo practitioner in a rural area, or a patient who’s bounced from doctor to doctor with adifficult–to-diagnose condition, there are many reasons why you might seek out expert medical advice from a larger group. Fortunately, in 2016, seeking feedback from other physicians or getting a second opinion is as easy as going online.

“Medical crowdsourcing” sites and apps are gathering steam, from provider-only forums likeSERMOsolves and Figure 1, to patient-focused sites like CrowdMed. They share the same mission of empowering doctors and patients, reducing misdiagnosis, and improving medicine. Is crowdsourcing the future of medicine? Read on to find out more.

Fixing misdiagnosis

An estimated 10 percent to 20 percent of medical cases are misdiagnosed, even more than drug errors and surgery on the wrong patient or body part, according to the National Center for Policy Analysis. And diagnostic errors are the leading cause of malpractice litigation. Doctors often report that with many of their patient cases, they would benefit from the support and advice of their peers.

The photo-sharing app for health professionals, Figure 1, is filling that need. Since we reported on it last year, the app has reached 1 million users and added a direct-messaging feature. The app is geared towards verified medical professionals, and goes to great lengths to protect patient privacy in keeping with HIPAAlaws. According to co-founder and CEO Gregory Levey, an average of 10,000 unique users check in toFigure 1 every hour, and medical professionals and students in 190 countries currently use the app.

Using Figure 1 to crowdsource advice from the medical community has saved at least one life. EmilyNayar, a physician assistant in rural Oklahoma and a self-proclaimed “Figure 1 addict,” told Wired magazine that because of photos she’d seen on the app, she was able to correctly diagnose a patient with shingles meningitis. Another doctor had misdiagnosed him previously, and the wrong medication could have killed him.

Collective knowledge at zero cost

In addition to serving as “virtual colleagues” for isolated medical providers, crowdsourcing forums can pool knowledge from an unprecedented number of doctors in different specialties and even countries,and can do so very quickly.

When we first reported on SERMO, the company billed itself as a “virtual doctors’ lounge.” Now, the global social network with 600,000 verified, credentialed physician members has pivoted to medical crowdsourcing with SERMOsolves, one of its most popular features, according to CEO Peter Kirk.

“Crowdsourcing patient cases through SERMOsolves is an ideal way for physicians to gain valuable information from the collective knowledge of hundreds of physicians instantly,” he said in a press release.According to SERMO, 3,500 challenging patient cases were posted in 2014, viewed 700,000 times, and received 50,000 comments. Most posted cases received responses within 1.5 hours and were resolved within a day. “We have physicians from more than 96 specialties and subspecialties posting on the platform, working together to share their valuable insights at zero cost to the healthcare system.”

While one early user of SERMO wrote on KevinMD.com that he felt the site’s potential was overshadowed by the anonymous rants and complaining, other users have noted that the medical crowdsourcing site has,like Figure 1, directly benefitted patients.

In an article on PhysiciansPractice.com, Richard Armstrong, M.D., cites the example of a family physician in Canada who posted a case of a young girl with an E. coli infection. “Physicians from around the world immediately began to comment and the recommendations resulted in a positive outcome for the patient.This instance offered cross-border learning experiences for the participating doctors, not only regarding the specific medical issue but also about how things are managed in different health systems,” wrote Dr.Armstrong.

Patients get proactive

While patients have long turned to social media to (questionably) crowdsource their medical queries, there are now more reputable sources than Facebook.

Tech entrepreneur Jared Heyman launched the health startup CrowdMed in 2013 after his sister endured a “terrible, undiagnosed medical condition that could have killed her,” he told the Wall Street Journal. She saw about 20 doctors over three years, racking up six-figure medical bills. The NIH Undiagnosed DiseaseProgram finally gave her a diagnosis: fragile X-associated primary ovarian insufficiency, a rare disease that affects just 1 in 15,000 women. A hormone patch resolved her debilitating symptoms….(More)”

How Technology Can Restore Our Trust in Democracy

Curated on Posted on by Stefaan Verhulst

Cenk Sidar in Foreign Policy: “The travails of the Arab Spring, the rise of the Islamic State, and the upsurge of right-wing populism throughout the countries of West all demonstrate a rising frustration with the liberal democratic order in the years since the 2008 financial crisis. There is a growing intellectual consensus that the world is sailing into uncharted territory: a realm marked by authoritarianism, shallow populism, and extremism.

One way to overcome this global resentment is to use the best tools we have to build a more inclusive and direct democracy. Could new technologies such as Augmented Reality (AR), Virtual Reality (VR), data analytics, crowdsourcing, and Blockchain help to restore meaningful dialogue and win back people’s hearts and minds?

Underpinning our unsettling current environment is an irony: Thanks to modern communication technology, the world is more connected than ever — but average people feel more disconnected. In the United States, polls show that trust in government is at a 50-year low. Frustrated Trump supporters and the Britons who voted for Brexit both have a sense of having “lost out” as the global elite consolidates its power and becomes less responsive to the rest of society. This is not an irrational belief: Branko Milanovic, a leading inequality scholar, has found that people in the lower and middle parts of rich countries’ income distributions have been the losers of the last 15 years of globalization.

The same 15 years have also brought astounding advances in technology, from the rise of the Internet to the growing ubiquity of smartphones. And Western society has, to some extent, struggled to find its bearings amid this transition. Militant groups seduce young people through social media. The Internet enables consumers to choose only the news that matches their preconceived beliefs, offering a bottomless well of partisan fury and conspiracy theories. Cable news airing 24/7 keeps viewers in a state of agitation. In short, communication technologies that are meant to bring us together end up dividing us instead (and not least because our politicians have chosen to game these tools for their own advantage).

It is time to make technology part of the solution. More urgently than ever, leaders, innovators, and activists need to open up the political marketplace to allow technology to realize its potential for enabling direct citizen participation. This is an ideal way to restore trust in the democratic process.

As the London School of Economics’ Mary Kaldor put it recently: “The task of global governance has to be reconceptualized to make it possible for citizens to influence the decisions that affect their lives — to reclaim substantive democracy.” One notable exception to the technological disconnect has been fundraising, as candidates have tapped into the Internet to enable millions of average voters to donate small sums. With the right vision, however, technological innovation in politics could go well beyond asking people for money….(More)”

Through the looking glass: Harnessing big data to respond to violent extremism

Curated on Posted on by Stefaan Verhulst

Michele Piercey, Carolyn Forbes, and Hasan Davulcu at Devex:”People think and say all sorts of things that they would never actually do. One of the biggest challenges in countering violent extremism is not only figuring out which people hold radical views, but who is most likely to join and act on behalf of violent extremist organizations. Determining who is likely to become violent is key to designing and evaluating more targeted interventions, but it has proven to be extremely difficult.

There are few recognized tools for assessing perceptions and beliefs, such as whether community sentiment about violent extremist organizations is more or less favorable, or which narratives and counternarratives resonate with vulnerable populations.

Program designers and monitoring and evaluation staff often rely on perception surveying to assess attitudinal changes that CVE programs try to achieve, but there are limitations to this method. Security and logistical challenges to collecting perception data in a conflict-affected community can make it difficult to get a representative sample, while ensuring the safety of enumerators and respondents. And given the sensitivity of the subject matter, respondents may be reluctant to express their actual beliefs to an outsider (that is, social desirability bias can affect data reliability).

The rise of smartphone technology and social media uptake among the burgeoning youth populations of many conflict-affected countries presents a new opportunity to understand what people believe from a safer distance, lessening the associated risks and data defects. Seeing an opportunity in the growing mass of online public data, the marketing industry has pioneered tools to “scrape” and aggregate the data to help companies paint a clearer picture of consumer behavior and perceptions of brands and products.

These developments present a critical question for CVE programs: Could similar tools be developed that would analyze online public data to identify who is being influenced by which extremist narratives and influences, learn which messages go viral, and distinguish groups and individuals who simply hold radical views from those who support or carry out violence?

Using data to track radicalization

Seeking to answer this question, researchers at Arizona State University’s Center for the Study of Religion and Conflict, Cornell University’s Social Dynamics Laboratory, and Carnegie Mellon’s Center for Computational Analysis of Social and Organizational systems have been innovating a wide variety of data analytics tools. ASU’s LookingGlass tool, for example, maps networks of perception, belief, and influence online. ASU and Chemonics International are now piloting the tool on a CVE program in Libya.

Drawn from the humanities and social and computational sciences, LookingGlass retrieves, categorizes, and analyzes vast amounts of data from across the internet to map the spread of extremist and counter-extremist influence online. The tool displays what people think about their political situation, governments and extremist groups, and tracks changes in these perceptions over time and in response to events. It also lets users visualize how groups emerge, interact, coalesce, and fragment in relation to emerging issues and events and evaluates “information cascades” to assess what causes extremist messages to go viral on social media and what causes them to die out.

By assessing the relative influence and expressed beliefs of diverse groups over time and in critical locations, LookingGlass represents an advanced capability for providing real-time contextual information about the ideological drivers of violent and counter-violent extremist movements online. Click here to view a larger version.

For CVE planners, LookingGlass can map social movements in relation to specific countries and regions. Indonesia, for example, has been the site of numerous violent movements and events. A relatively young democracy, the country’s complex political environment encompasses numerous groups seeking radical change across a wide spectrum of social and political issues….(More)”

 

Make Algorithms Accountable

Curated on Posted on by Stefaan Verhulst

Julia Angwin in The New York Times: “Algorithms are ubiquitous in our lives. They map out the best route to our destination and help us find new music based on what we listen to now. But they are also being employed to inform fundamental decisions about our lives.

Companies use them to sort through stacks of résumés from job seekers. Credit agencies use them to determine our credit scores. And the criminal justice system is increasingly using algorithms to predict a defendant’s future criminality.
Those computer-generated criminal “risk scores” were at the center of a recent Wisconsin Supreme Court decision that set the first significant limits on the use of risk algorithms in sentencing.
The court ruled that while judges could use these risk scores, the scores could not be a “determinative” factor in whether a defendant was jailed or placed on probation. And, most important, the court stipulated that a pre sentence report submitted to the judge must include a warning about the limits of the algorithm’s accuracy.

This warning requirement is an important milestone in the debate over how our data-driven society should hold decision-making software accountable.But advocates for big data due process argue that much more must be done to assure the appropriateness and accuracy of algorithm results.

An algorithm is a procedure or set of instructions often used by a computer to solve a problem. Many algorithms are secret. In Wisconsin, for instance,the risk-score formula was developed by a private company and has never been publicly disclosed because it is considered proprietary. This secrecy has made it difficult for lawyers to challenge a result.

 The credit score is the lone algorithm in which consumers have a legal right to examine and challenge the underlying data used to generate it. In 1970,President Richard M. Nixon signed the Fair Credit Reporting Act. It gave people the right to see the data in their credit reports and to challenge and delete data that was inaccurate.

For most other algorithms, people are expected to read fine-print privacy policies, in the hopes of determining whether their data might be used against them in a way that they wouldn’t expect.

 “We urgently need more due process with the algorithmic systems influencing our lives,” says Kate Crawford, a principal researcher atMicrosoft Research who has called for big data due process requirements.“If you are given a score that jeopardizes your ability to get a job, housing or education, you should have the right to see that data, know how it was generated, and be able to correct errors and contest the decision.”

The European Union has recently adopted a due process requirement for data-driven decisions based “solely on automated processing” that“significantly affect” citizens. The new rules, which are set to go into effect in May 2018, give European Union citizens the right to obtain an explanation of automated decisions and to challenge those decisions. However, since the European regulations apply only to situations that don’t involve human judgment “such as automatic refusal of an online credit application or e-recruiting practices without any human intervention,” they are likely to affect a narrow class of automated decisions. …More recently, the White House has suggested that algorithm makers police themselves. In a recent report, the administration called for automated decision-making tools to be tested for fairness, and for the development of“algorithmic auditing.”

But algorithmic auditing is not yet common. In 2014, Eric H. Holder Jr.,then the attorney general, called for the United States SentencingCommission to study whether risk assessments used in sentencing were reinforcing unjust disparities in the criminal justice system. No study was done….(More)”

Open Data for Developing Economies

Curated on Posted on by Stefaan Verhulst

Scan of the literature by Andrew Young, Stefaan Verhulst, and Juliet McMurren: This edition of the GovLab Selected Readings was developed as part of the Open Data for Developing Economies research project (in collaboration with WebFoundation, USAID and fhi360). Special thanks to Maurice McNaughton, Francois van Schalkwyk, Fernando Perini, Michael Canares and David Opoku for their input on an early draft. Please contact Stefaan Verhulst ([email protected]) for any additional input or suggestions.

Open data is increasingly seen as a tool for economic and social development. Across sectors and regions, policymakers, NGOs, researchers and practitioners are exploring the potential of open data to improve government effectiveness, create new economic opportunity, empower citizens and solve public problems in developing economies. Open data for development does not exist in a vacuum – rather it is a phenomenon that is relevant to and studied from different vantage points including Data4Development (D4D), Open Government, the United Nations’ Sustainable Development Goals (SDGs), and Open Development. The below-selected readings provide a view of the current research and practice on the use of open data for development and its relationship to related interventions.

Selected Reading List (in alphabetical order)

  • Open Data and Open Development…
  • Open Data and Developing Countries (National Case Studies)….(More)”

Metric Power

Curated on Posted on by Stefaan Verhulst

Book by David Beer: This book examines the powerful and intensifying role that metrics play in ordering and shaping our everyday lives. Focusing upon the interconnections between measurement, circulation and possibility, the author explores the interwoven relations between power and metrics. He draws upon a wide-range of interdisciplinary resources to place these metrics within their broader historical, political and social contexts. More specifically, he illuminates the various ways that metrics implicate our lives – from our work, to our consumption and our leisure, through to our bodily routines and the financial and organisational structures that surround us. Unravelling the power dynamics that underpin and reside within the so-called big data revolution, he develops the central concept of Metric Power along with a set of conceptual resources for thinking critically about the powerful role played by metrics in the social world today….(More)”

Expanding citizen science models to enhance open innovation

Curated on Posted on by Stefaan Verhulst

 in the Conversation: “Over the years, citizen scientists have provided vital data and contributed in invaluable ways to various scientific quests. But they’re typically relegated to helping traditional scientists complete tasks the pros don’t have the time or resources to deal with on their own. Citizens are asked to count wildlife, for instance, or classify photos that are of interest to the lead researchers.

This type of top-down engagement has consigned citizen science to the fringes, where it fills a manpower gap but not much more. As a result, its full value has not been realized. Marginalizing the citizen scientists and their potential contribution is a grave mistake – it limits how far we can go in science and the speed and scope of discovery.

Instead, by harnessing globalization’s increased interconnectivity, citizen science should become an integral part of open innovation. Science agendas can be set by citizens, data can be open, and open-source software and hardware can be shared to assist in the scientific process. And as the model proves itself, it can be expanded even further, into nonscience realms.

…

 

The time is right for citizen science to join forces with open innovation. This is a concept that describes partnering with other people and sharing ideas to come up with something new. The assumption is that more can be achieved when boundaries are lowered and resources – including ideas, data, designs and software and hardware – are opened and made freely available.

Open innovation is collaborative, distributed, cumulative and it develops over time. Citizen science can be a critical element here because its professional-amateurs can become another significant source of data, standards and best practices that could further the work of scientific and lay communities.

Globalization has spurred on this trend through the ubiquity of internet and wireless connections, affordable devices to collect data (such as cameras, smartphones, smart sensors, wearable technologies), and the ability to easily connect with others. Increased access to people, information and ideas points the way to unlock new synergies, new relationships and new forms of collaboration that transcend boundaries. And individuals can focus their attention and spend their time on anything they want.

We are seeing this emerge in what has been termed the “solution economy” – where citizens find fixes to challenges that are traditionally managed by government.

Consider the issue of accessibility. Passage of the 1990 Americans with Disabilities Act aimed to improve accessibility issues in the U.S. But more than two decades later, individuals with disabilities are still dealing with substantial mobility issues in public spaces – due to street conditions, cracked or nonexistent sidewalks, missing curb cuts, obstructions or only portions of a building being accessible. These all can create physical and emotional challenges for the disabled.

To help deal with this issue, several individual solution seekers have merged citizen science, open innovation and open sourcing to create mobile and web applications that provide information about navigating city streets. For instance, Jason DaSilva, a filmmaker with multiple sclerosis, developed AXS Map – a free online and mobile app powered by Google Places API. It crowdsources information from people across the country about wheelchair accessibility in cities nationwide….

Perhaps the most pressing limitation of scaling up the citizen science model is issues with reliability. While many of these projects have been proven reliable, others have fallen short.

For instance, crowdsourced damage assessments from satellite images following 2013’s Typhoon Haiyan in the Philippines faced challenges. But according to aid agencies, remote damage assessments by citizen scientists had a devastatingly low accuracy of 36 percent. They overrepresented “destroyed” structures by 134 percent….(More)”

Gamification of physical activity: Beat the Street and Pokémon Go

Curated on Posted on by Stefaan Verhulst

Katherine Knight at NESTA: “Since launching in the US on 6 July, Pokémon Go has become a global phenomenon with millions of downloads and more active users than Twitter. The game has been attributed with improving mental health, establishing augmented reality as mainstream and boosting traffic to local businesses.

Pokémon Go has also caused a massive spike in physical activity similar to that seen following New Year’s Resolutions. While the game’s main intention was not to transform the health of its players, it has clearly demonstrated the powerful potential of gamification as a means to get people active.

Gamified design has already been recognised by leading organisations in transport, nature, and the voluntary sector as a way to engage new audiences and change behaviour, but only recently have we come to understand how gamification can be used to dramatically increase physical activity and improve public health.

Changing habitual behaviours such as inactivity or driving to school and work has proven difficult via traditional health initiatives. Gamification provides new opportunities move people towards a more active lifestyle by providing positive incentives and rewards for players who get moving. In the case of Pokémon GO, the incentive to catch and collect as many Pokémon as possible is enough to nudge players to go outside and get active.

Gamification offers advantages over other types of physical activity campaigns due to its ability to bypass the perceived barriers to becoming active. Gamified design can deliver health through stealth by encouraging people to play a fun, free game rather than take part in a fitness scheme.

The impact of gamifying health can be clearly seen in Intelligent Health’s Beat the Street initiative which transforms communities into playable cities. At the heart of Beat the Street is a six-week game where residents are encouraged to explore their local area by tapping cards and fobs against special sensors – Beat Boxes – distributed across their town. Players are rewarded with points, can create teams and earn prizes depending on how far they run, walk or cycle….(More)”.

Network Science

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Book by Albert-László Barabási: “Networks are everywhere, from the Internet, to social networks, and the genetic networks that determine our biological existence. Illustrated throughout in full colour, this pioneering textbook, spanning a wide range of topics from physics to computer science, engineering, economics and the social sciences, introduces network science to an interdisciplinary audience. From the origins of the six degrees of separation to explaining why networks are robust to random failures, the author explores how viruses like Ebola and H1N1 spread, and why it is that our friends have more friends than we do. Using numerous real-world examples, this innovatively designed text includes clear delineation between undergraduate and graduate level material. The mathematical formulas and derivations are included within Advanced Topics sections, enabling use at a range of levels. Extensive online resources, including films and software for network analysis, make this a multifaceted companion for anyone with an interest in network science….(More)”

Stop the privatization of health data

Curated on Posted on by Stefaan Verhulst

John T. Wilbanks & Eric J. Topol in Nature: “Over the past year, technology titans including Google, Apple, Microsoft and IBM have been hiring leaders in biomedical research to bolster their efforts to change medicine….

In many ways, the migration of clinical scientists into technology corporations that are focused on gathering, analysing and storing information is long overdue. Because of the costs and difficulties of obtaining data about health and disease, scientists conducting clinical or population studies have rarely been able to track sufficient numbers of patients closely enough to make anything other than coarse predictions. Given such limitations, who wouldn’t want access to Internet-scale, multidimensional health data; teams of engineers who can build sensors for data collection and algorithms for analysis; and the resources to conduct projects at scales and speeds unthinkable in the public sector?

Yet there is a major downside to monoliths such as Google or smaller companies such as consumer-genetics firm 23andMe owning health data — or indeed, controlling the tools and methods used to match people’s digital health profiles to specific services.

Digital profiling in other contexts is already creating what has been termed a ‘black box’ society. Online adverts are tailored to people’s age, location, spending and browsing habits. Certain retail services have preferentially been made available only to particular groups of people. And law enforcers are being given tools to help them make sentencing decisions that cannot be openly assessed (see go.nature.com/29umpu1). This is all thanks to the deliberately hidden collection and manipulation of personal data.

If undisclosed algorithmic decision-making starts to incorporate health data, the ability of black-box calculations to accentuate pre-existing biases in society could greatly increase. Crucially, if the citizens being profiled are not given their data and allowed to share the information with others, they will not know about incorrect or discriminatory health actions — much less be able to challenge them. And most researchers won’t have access to such health data either, or to the insights gleaned from them….(More)”