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)”

Nudging for Success

Curated on Posted on by Stefaan Verhulst

Press Release: “A groundbreaking report published today by ideas42 reveals several innovations that college administrators and policymakers can leverage to significantly improve college graduation rates at a time where completion is more out of reach than ever for millions of students.

The student path through college to graduation day is strewn with subtle, often invisible barriers that, over time, hinder students’ progress and cause some of them to drop out entirely. In Nudging for Success: Using Behavioral Science to Improve the Postsecondary Student Journey, ideas42 focuses on simple, low-cost ways to combat these unintentional obstacles and support student persistence and success at every stage in the college experience, from pre-admission to post-graduation. Teams worked with students, faculty and administrators at colleges around the country.

Even for students whose tuition is covered by financial aid, whose academic preparation is exemplary, and who are able to commit themselves full-time to their education, the subtle logistical and psychological sticking points can have a huge impact on their ability to persist and fully reap the benefits of a higher education.

Less than 60% of full-time students graduate from four-year colleges within six years, and less than 30% graduate from community colleges within three years. There are a myriad of factors often cited as deterrents to finishing school, such as the cost of tuition or the need to juggle family and work obligations, but behavioral science and the results of this report demonstrate that lesser-known dynamics like self-perception are also at play.

From increasing financial aid filing to fostering positive friend groups and a sense of belonging on campus, the 16 behavioral solutions outlined in Nudging for Success represent the potential for significant impact on the student experience and persistence. At Arizona State University, sending behaviorally-designed email reminders to students and parents about the Free Application for Federal Student Aid (FAFSA) priority deadline increased submissions by 72% and led to an increase in grant awards. Freshman retention among low-income, first generation, under-represented or other students most at risk of dropping out increased by 10% at San Francisco State University with the use of a testimonial video, self-affirming exercises, and monthly messaging aimed at first-time students.

“This evidence demonstrates how behavioral science can be the key to uplifting millions of Americans through education,” said Alissa Fishbane, Managing Director at ideas42. “By approaching the completion crisis from the whole experience of students themselves, administrators and policymakers have the opportunity to reduce the number of students who start, but do not finish, college—students who take on the financial burden of tuition but miss out on the substantial benefits of earning a degree.”

The results of this work drive home the importance of examining the college experience from the student perspective and through the lens of human behavior. College administrators and policymakers can replicate these gains at institutions across the country to make it simpler for students to complete the degree they started in ways that are often easier and less expensive to implement than existing alternatives—paving the way to stronger economic futures for millions of Americans….(More)”

The Digital Equilibrium Project

Curated on Posted on by Stefaan Verhulst

Press Release by The Digital Equilibrium Project: “Cybersecurity, government and privacy experts are banding together as part of The ‘Digital Equilibrium Project’ to foster a new, productive dialogue on balancing security and privacy in the connected world. The project aims to address the underlying issues fueling acrimonious debates like the contentious court order between Apple and the U.S. Government.

  • The diverse group includes current and former leaders of some of the world’s largest cybersecurity firms and organizations, former officials in the NSA and national law enforcement, and leaders of some of the nation’s most influential privacy organizations. These individuals believe new thinking and collaboration is needed to avert potential catastrophes as the digital and physical worlds become more interdependent.
  • The group will release its foundational paper ‘Balancing Security and Privacy in the Connected World’ on Tuesday, March 1st at the RSA Conference – the world’s largest cybersecurity conference.
  • This project and related paper, months in the making, seek to end the kinds of standoffs we are seeing between Apple and the U.S. Government, addressing the underlying lack of social norms and legal constructs for the digital world.
  • They will convene a mid-year summit to craft a framework or ‘constitution’ for the digital world. The intent of this constitution is to help guide policy creation, broker compromise and serve as the foundation for decision making around cybersecurity issues. Senior executives from the Justice Department, Apple and other technology firms will be invited to participate…..

Next week the group will publish its foundational paper, crafted over extensive meetings, interviews and working sessions. The paper is meant to foster a new, collaborative discussion on the most pressing questions that could determine the future safety and social value of the Internet and the digital technologies that depend on it. In addition to releasing the paper at the RSA Conference, members of the group will discuss the paper and related issues during a main-stage panel session moderated by Art Coviello, former Executive Chairman of RSA Security, and James Kaplan, a McKinsey partner, on Thursday, March 3rd. Panel members will include: Michael Chertoff, Executive Chairman of The Chertoff Group and former Secretary of Homeland Security; Trevor Hughes, President and CEO of the International Association of Privacy Professionals; Mike McConnell, former Director of the NSA and Director, National Intelligence; and Nuala O’Connor, President and CEO, Center for Democracy & Technology.

The paper urges governments, corporations and privacy advocates to put aside the polarizing arguments that have cast security and privacy as opposing forces, and calls for a mid-year summit meeting between these parties to formulate a new structure for advancement of these pressing issues. It poses four fundamental questions that must be addressed to ensure the digital world can evolve in ways that ensure individual privacy while enabling the productivity and commercial gains that can improve quality of life around the globe. The four questions are:

  • What practices should organizations adopt to achieve their goals while protecting the privacy of their customers and other stakeholders?
  • How can organizations continue to improve the protection of their digital infrastructures and adopt privacy management practices that protect their employees?
  • What privacy management practices should governments adopt to maintain civil liberties and expectations of privacy, while ensuring the safety and security of their citizens, organizations, and critical infrastructure?
  • What norms should countries adopt to protect their sovereignty while enabling global commerce and collaboration against criminal and terrorist threats?

The Digital Equilibrium Project’s foundational paper will available for download on March 1st at www.digitalequilibriumproject.com”

Big Data: A Tool for Inclusion or Exclusion? Understanding the Issues

Curated on Posted on by Stefaan Verhulst

Press Release: “A new report from the Federal Trade Commission outlines a number of questions for businesses to consider to help ensure that their use of big data analytics, while producing many benefits for consumers, avoids outcomes that may be exclusionary or discriminatory.

“Big data’s role is growing in nearly every area of business, affecting millions of consumers in concrete ways,” said FTC Chairwoman Edith Ramirez. “The potential benefits to consumers are significant, but businesses must ensure that their big data use does not lead to harmful exclusion or discrimination.”

The report, Big Data: A Tool for Inclusion or Exclusion? Understanding the Issues, looks specifically at big data at the end of its lifecycle – how it is used after being collected and analyzed, and draws on information from the FTC’s 2014 workshop, “Big Data: A Tool for Inclusion or Exclusion?,” as well as the Commission’s seminar on Alternative Scoring Products. The Commission also considered extensive public comments and additional public research in compiling the report.

The report highlights a number of innovative uses of big data that are providing benefits to underserved populations, including increased educational attainment, access to credit through non-traditional methods, specialized health care for underserved communities, and better access to employment.

In addition, the report looks at possible risks that could result from biases or inaccuracies about certain groups, including more individuals mistakenly denied opportunities based on the actions of others, exposing sensitive information, creating or reinforcing existing disparities, assisting in the targeting of vulnerable consumers for fraud, creating higher prices for goods and services in lower-income communities and weakening the effectiveness of consumer choice.

The report outlines some of the various laws that apply to the use of big data, especially in regards to possible issues of discrimination or exclusion, including the Fair Credit Reporting Act, FTC Act and equal opportunity laws. It also provides a range of questions for businesses to consider when they examine whether their big data programs comply with these laws.

The report also proposes four key policy questions that are drawn from research into the ways big data can both present and prevent harms. The policy questions are designed to help companies determine how best to maximize the benefit of their use of big data while limiting possible harms, by examining both practical questions of accuracy and built-in bias as well as whether the company’s use of big data raises ethical or fairness concerns….(More)”

Daedalus Issue on “The Internet”

Curated on Posted on by Stefaan Verhulst

Press release: “Thirty years ago, the Internet was a network that primarily delivered email among academic and government employees. Today, it is rapidly evolving into a control system for our physical environment through the Internet of Things, as mobile and wearable technology more tightly integrate the Internet into our everyday lives.

How will the future Internet be shaped by the design choices that we are making today? Could the Internet evolve into a fundamentally different platform than the one to which we have grown accustomed? As an alternative to big data, what would it mean to make ubiquitously collected data safely available to individuals as small data? How could we attain both security and privacy in the face of trends that seem to offer neither? And what role do public institutions, such as libraries, have in an environment that becomes more privatized by the day?

These are some of the questions addressed in the Winter 2016 issue of Daedalus on “The Internet.”  As guest editors David D. Clark (Senior Research Scientist at the MIT Computer Science and Artificial Intelligence Laboratory) and Yochai Benkler (Berkman Professor of Entrepreneurial Legal Studies at Harvard Law School and Faculty Co-Director of the Berkman Center for Internet and Society at Harvard University) have observed, the Internet “has become increasingly privately owned, commercial, productive, creative, and dangerous.”

Some of the themes explored in the issue include:

  • The conflicts that emerge among governments, corporate stakeholders, and Internet users through choices that are made in the design of the Internet
  • The challenges—including those of privacy and security—that materialize in the evolution from fixed terminals to ubiquitous computing
  • The role of public institutions in shaping the Internet’s privately owned open spaces
  • The ownership and security of data used for automatic control of connected devices, and
  • Consumer demand for “free” services—developed and supported through the sale of user data to advertisers….

Essays in the Winter 2016 issue of Daedalus include:

  • The Contingent Internet by David D. Clark (MIT)
  • Degrees of Freedom, Dimensions of Power by Yochai Benkler (Harvard Law School)
  • Edge Networks and Devices for the Internet of Things by Peter T. Kirstein (University College London)
  • Reassembling Our Digital Selves by Deborah Estrin (Cornell Tech and Weill Cornell Medical College) and Ari Juels (Cornell Tech)
  • Choices: Privacy and Surveillance in a Once and Future Internet by Susan Landau (Worcester Polytechnic Institute)
  • As Pirates Become CEOs: The Closing of the Open Internet by Zeynep Tufekci (University of North Carolina at Chapel Hill)
  • Design Choices for Libraries in the Digital-Plus Era by John Palfrey (Phillips Academy)…(More)

See also: Introduction

Creating Value through Open Data

Curated on Posted on by Stefaan Verhulst

Press Release: “Capgemini Consulting, the global strategy and transformation consulting arm of the Capgemini Group, today published two new reports on the state of play of Open Data in Europe, to mark the launch of the European Open Data Portal. The first report addresses “Open Data Maturity in Europe 2015: Insights into the European state of play” and the second focuses on “Creating Value through Open Data: Study on the Impact of Re-use of Public Data Resources.” The countries covered by these assessments include the EU28 countries plus Iceland, Liechtenstein, Norway, and Switzerland – commonly referred to as the EU28+ countries. The reports were requested by the European Commission within the framework of the Connecting Europe Facility program, supporting the deployment of European Open Data infrastructure.

Open Data refers to the information collected, produced or paid for by public bodies and can be freely used, modified and shared by anyone.. For the period 2016-2020, the direct market size for Open Data is estimated at EUR 325 billion for Europe. Capgemini’s study “Creating Value through Open Data” illustrates how Open Data can create economic value in multiple ways including increased market transactions, job creation from producing services and products based on Open Data, to cost savings and efficiency gains. For instance, effective use of Open Data could help save 629 million hours of unnecessary waiting time on the roads in the EU; and help reduce energy consumption by 16%. The accumulated cost savings for public administrations making use of Open Data across the EU28+ in 2020 are predicted to equal 1.7 bn EUR. Reaping these benefits requires reaching a high level of Open Data maturity.

In order to address the accessibility and the value of Open Data across European countries, the European Union has launched the Beta version of the European Data Portal. The Portal addresses the whole Data Value Chain, from data publishing to data re-use. Over 240,000 data sets are referenced on the Portal and 34 European countries. It offers seamless access to public data across Europe, with over 13 content categories to categorize data, ranging from health or education to transport or even science and justice. Anyone, citizens, businesses, journalists or administrations can search, access and re-use the full data collection. A wide range of data is available, from crime records in Helsinki, labor mobility in the Netherlands, forestry maps in France to the impact of digitization in Poland…..The study, “Open Data Maturity in Europe 2015: Insights into the European state of play”, uses two key indicators: Open Data Readiness and Portal Maturity. These indicators cover both the maturity of national policies supporting Open Data as well as an assessment of the features made available on national data portals. The study shows that the EU28+ have completed just 44% of the journey towards achieving full Open Data Maturity and there are large discrepancies across countries. A third of European countries (32%), recognized globally, are leading the way with solid policies, licensing norms, good portal traffic and many local initiatives and events to promote Open Data and its re-use….(More)”

RethinkCityHall.org

Curated on Posted on by Stefaan Verhulst

Press Release (Boston): “Mayor Martin J. Walsh today announced the launch of RethinkCityHall.org, a website designed to encourage civic participation in the City Hall campus plan study, a one-year comprehensive planning process that will serve as a roadmap for the operation and design improvements to City Hall and the plaza.

This announcement is one of three interrelated efforts that the City is pursuing to reinvigorate and bring new life to both City Hall and City Hall Plaza.   As part of the Campus Plan Request for Qualifications (RFQ) that was released on June 8, 2015, the City has selected Utile, a local architecture and planning firm, to partner with the city to lead the campus plan study.  Utile is teamed with Grimshaw Architects and Reed Hilderbrand for the design phases of the effort.

“I am excited to have Utile on board as we work to identify ways to activate our civic spaces,” said Mayor Walsh. “As we progress in the planning process, it is important to take inventory of all of our assets to be able to identify opportunities for improvement. This study will help us develop a thoughtful and forward-thinking plan to reimagine City Hall and the plaza as thriving, healthy and innovative civic spaces.”

“We are energized by Mayor Walsh’s challenge and are excited to work with the various constituencies to develop an innovative plan,” said Tim Love, a principal at Utile. “Thinking about the functional, programmatic and experiential aspects of both the building and plaza provides the opportunity to fundamentally rethink City Hall.”

Both the City and Utile are committed to an open and interactive process that engages members of the public, community groups, professional organizations, and as part of that effort the website will include information about stakeholder meetings and public forums. Additionally, the website will be updated on an ongoing basis with the research, analysis, concepts and design scenarios generated by the consultant team….(More)”

Infographic: World Statistics Day 2015

Curated on Posted on by Stefaan Verhulst

Press Release: “The U.S. Census Bureau will join statistical organizations throughout the world to celebrate the second World Statistics Day on Oct. 20, 2015.

This interactive infographic is a compilation of news graphics that highlights the wide range of ways the Census Bureau supports this year’s theme of “Better data. Better lives.”

The Census Bureau uses statistics to provide critical and timely information about the people, places and economy of the United States.

For more information on World Statistics Day 2015, please see the links provided below.

Hacking the Obesity Epidemic

Curated on Posted on by Stefaan Verhulst

Press Release: “The de Beaumont Foundation, in collaboration with the Health Data Consortium and the Department of Health and Human Services (HHS), is pleased to announce the winners of the U.S. Obesity Data Challenge at NHS England’s Health and Care Innovation Expo 2015. The challenge is part of a joint U.S.-England initiative designed to harness the power of health data in tackling the epidemic of adult obesity in both countries….

The winning entries are:

  • Healthdata+Obesity (1st place) — This simple, curated dashboard helps health officials tell a powerful story about the root causes of obesity. The dashboard provides customizable data visualizations at the national, state, and local level as well as an interactive map, national benchmarks, and written content to contextualize the data. Developed by HealthData+, a partnership between the Public Health Institute and LiveStories.
  • The Neighborhood Map of U.S. Obesity (2nd Place) — This highly-detailed, interactive mapincorporates obesity data with a GIS database to provide a localized, high-resolution visualization of the prevalence of obesity. Additional data sources can also be added to the map to allow researchers and health officials greater flexibility in customizing the map to support analysis and decision-making on a community level. Developed by RTI International.
  • The Health Demographic Analysis Tool – Visualizing The Cross-Sector Relationship Between Obesity And Social Determinants (3rd Place) — This interactive database maps the relationship between the social determinants of health (factors like educational attainment, income, and lifestyle choices) and health outcomes in order to illustrate what plays a role in community health. The powerful images generated by this tool provide compelling material for new health interventions as well as a way to look retrospectively at the impact of existing public health campaigns. Developed by GeoHealth Innovations andCommunity Health Solutions….(More)

President Obama Signs Executive Order Making Presidential Innovation Fellows Program Permanent

Curated on Posted on by Stefaan Verhulst

White House Press Release: “My hope is this continues to encourage a culture of public service among our innovators, and tech entrepreneurs, so that we can keep building a government that’s as modern, as innovative, and as engaging as our incredible tech sector is.  To all the Fellows who’ve served so far – thank you.  I encourage all Americans with bold ideas to apply.  And I can’t wait to see what those future classes will accomplish on behalf of the American people.” –- President Barack Obama

Today, President Obama signed an executive order that makes the Presidential Innovation Fellows Program a permanent part of the Federal government going forward. The program brings executives, entrepreneurs, technologists, and other innovators into government, and teams them up with Federal employees to improve programs that serve more than 150 million Americans.

The Presidential Innovation Fellows Program is built on four key principles:

  • Recruit the best our nation has to offer: Fellows include entrepreneurs, startup founders, and innovators with experience at large technology companies and startups, each of whom leverage their proven skills and technical expertise to create huge value for the public.
  • Partner with innovators inside government: Working as teams, the Presidential Innovation Fellows and their partners across the government create products and services that are responsive, user-friendly, and help to improve the way the Federal government interacts with the American people.
  • Deploy proven private sector strategies: Fellows leverage best practices from the private sector to deliver better, more effective programs and policies across the Federal government.
  • Focus on some of the Nation’s biggest and most pressing challenges: Projects focus on topics such as improving access to education, fueling job creation and the economy, and expanding the public’s ability to access their personal health data.

Additional Details on Today’s Announcements

The Executive Order formally establishes the Presidential Innovation Fellows Program within the General Services Administration (GSA), where it will continue to serve departments and agencies throughout the Executive Branch. The Presidential Innovation Fellow Program will be administered by a Director and guided by a newly-established Advisory Board. The Director will outline steps for the selection, hiring, and deployment of Fellows within government….

Fellows have partnered with leaders at more than 25 government agencies, delivering impressive results in months, not years, driving extraordinary work and innovative solutions in areas such as health care; open data and data science; crowd-sourcing initiatives; education; veterans affairs; jobs and the economy; and disaster response and recovery. Examples of projects include:

Open Data

When government acts as a platform, entrepreneurs, startups, and the private sector can build value-added services and tools on top of federal datasets supported by federal policies. Taking this approach, Fellows and agency stakeholders have supported the creation of new products and services focused on education, health, the environment, and social justice. As a result of their efforts and the agencies they have worked with:….

Jobs and the Economy

Fellows continue to work on solutions that will give the government better access to innovative tools and services. This is also helping small and medium-sized companies create jobs and compete for Federal government contracts….

Digital Government

The Presidential Innovation Fellows Program is a part of the Administration’s strategy to create lasting change across the Federal Government by improving how it uses technology. The Fellows played a part in launching 18F within the General Services Administration (GSA) and the U.S. Digital Services (USDS) team within the Office of Management and Budget….

Supporting Our Veterans

  • …Built a one-stop shop for finding employment opportunities. The Veterans Employment Center was developed by a team of Fellows working with the Department of Veterans Affairs in connection with the First Lady’s Joining Forces Initiative and the Department of Labor. This is the first interagency website connecting Veterans, transitioning Servicemembers, and their spouses to meaningful employment opportunities. The portal has resulted in cost savings of over $27 million to the Department of Veterans Affairs.

Education

  • …More than 1,900 superintendents pledged to more effectively leverage education technology in their schools. Fellows working at the Department of Education helped develop the idea of Future Ready, which later informed the creation of the Future Ready District Pledge. The Future Ready District Pledge is designed to set out a roadmap to achieve successful personalized digital learning for every student and to commit districts to move as quickly as possible towards our shared vision of preparing students for success. Following the President’s announcement of this effort in 2014, more than 1,900 superintendents have signed this pledge, representing 14 million students.

Health and Patient Care

  • More than 150 million Americans are able to access their health records online. Multiple rounds of Fellows have worked with the Department of Health and Human Services (HHS) and the Department of Veterans Affairs (VA) to expand the reach of theBlue Button Initiative. As a result, patients are able to access their electronic health records to make more informed decisions about their own health care. The Blue Button Initiative has received more than 600 commitments from organizations to advance health information access efforts across the country and has expanded into other efforts that support health care system interoperability….

Disaster Response and Recovery

  • Communities are piloting crowdsourcing tools to assess damage after disasters. Fellows developed the GeoQ platform with FEMA and the National Geospatial-Intelligence Agency that crowdsources photos of disaster-affected areas to assess damage over large regions.  This information helps the Federal government better allocate critical response and recovery efforts following a disaster and allows local governments to use geospatial information in their communities…. (More)