Crowdsourcing forecasts on science and technology events and innovations


Kurzweil News: “George Mason University launched today, Jan. 10, the largest and most advanced science and technology prediction market in the world: SciCast.
The federally funded research project aims to improve the accuracy of science and technology forecasts. George Mason research assistant professor Charles Twardy is the principal investigator of the project.
SciCast crowdsources forecasts on science and technology events and innovations from aerospace to zoology.
For example, will Amazon use drones for commercial package delivery by the end of 2017? Today, SciCast estimates the chance at slightly more than 50 percent. If you think that is too low, you can estimate a higher chance. SciCast will use your estimate to adjust the combined forecast.
Forecasters can update their forecasts at any time; in the above example, perhaps after the Federal Aviation Administration (FAA) releases its new guidelines for drones. The continually updated and reshaped information helps both the public and private sectors better monitor developments in a variety of industries. SciCast is a real-time indicator of what participants think is going to happen in the future.
“Combinatorial” prediction market better than simple average


How SciCast works (Credit: George Mason University)
The idea is that collective wisdom from diverse, informed opinions can provide more accurate predictions than individual forecasters, a notion borne out by other crowdsourcing projects. Simply taking an average is almost always better than going with the “best” expert. But in a two-year test on geopolitical questions, the SciCast method did 40 percent better than the simple average.
SciCast uses the first general “combinatorial” prediction market. In a prediction market, forecasters spend points to adjust the group forecast. Significant changes “cost” more — but “pay” more if they turn out to be right. So better forecasters gain more points and therefore more influence, improving the accuracy of the system.
In a combinatorial market like SciCast, forecasts can influence each other. For example, forecasters might have linked cherry production to honeybee populations. Then, if forecasters increase the estimated percentage of honeybee colonies lost this winter, SciCast automatically reduces the estimated 2014 cherry production. This connectivity among questions makes SciCast more sophisticated than other prediction markets.
SciCast topics include agriculture, biology and medicine, chemistry, computational sciences, energy, engineered technologies, global change, information systems, mathematics, physics, science and technology business, social sciences, space sciences and transportation….

Crowdsourcing forecasts on science and technology events and innovations

George Mason University’s just-launched SciCast is largest and most advanced science and technology prediction market in the world
January 10, 2014


Example of SciCast crowdsourced forecast (credit: George Mason University)
George Mason University launched today, Jan. 10, the largest and most advanced science and technology prediction market in the world: SciCast.
The federally funded research project aims to improve the accuracy of science and technology forecasts. George Mason research assistant professor Charles Twardy is the principal investigator of the project.
SciCast crowdsources forecasts on science and technology events and innovations from aerospace to zoology.
For example, will Amazon use drones for commercial package delivery by the end of 2017? Today, SciCast estimates the chance at slightly more than 50 percent. If you think that is too low, you can estimate a higher chance. SciCast will use your estimate to adjust the combined forecast.
Forecasters can update their forecasts at any time; in the above example, perhaps after the Federal Aviation Administration (FAA) releases its new guidelines for drones. The continually updated and reshaped information helps both the public and private sectors better monitor developments in a variety of industries. SciCast is a real-time indicator of what participants think is going to happen in the future.
“Combinatorial” prediction market better than simple average


How SciCast works (Credit: George Mason University)
The idea is that collective wisdom from diverse, informed opinions can provide more accurate predictions than individual forecasters, a notion borne out by other crowdsourcing projects. Simply taking an average is almost always better than going with the “best” expert. But in a two-year test on geopolitical questions, the SciCast method did 40 percent better than the simple average.
SciCast uses the first general “combinatorial” prediction market. In a prediction market, forecasters spend points to adjust the group forecast. Significant changes “cost” more — but “pay” more if they turn out to be right. So better forecasters gain more points and therefore more influence, improving the accuracy of the system.
In a combinatorial market like SciCast, forecasts can influence each other. For example, forecasters might have linked cherry production to honeybee populations. Then, if forecasters increase the estimated percentage of honeybee colonies lost this winter, SciCast automatically reduces the estimated 2014 cherry production. This connectivity among questions makes SciCast more sophisticated than other prediction markets.
SciCast topics include agriculture, biology and medicine, chemistry, computational sciences, energy, engineered technologies, global change, information systems, mathematics, physics, science and technology business, social sciences, space sciences and transportation.
Seeking futurists to improve forecasts, pose questions


(Credit: George Mason University)
“With so many science and technology questions, there are many niches,” says Twardy, a researcher in the Center of Excellence in Command, Control, Communications, Computing and Intelligence (C4I), based in Mason’s Volgenau School of Engineering.
“We seek scientists, statisticians, engineers, entrepreneurs, policymakers, technical traders, and futurists of all stripes to improve our forecasts, link questions together and pose new questions.”
Forecasters discuss the questions, and that discussion can lead to new, related questions. For example, someone asked,Will Amazon deliver its first package using an unmanned aerial vehicle by Dec. 31, 2017?
An early forecaster suggested that this technology is likely to first be used in a mid-sized town with fewer obstructions or local regulatory issues. Another replied that Amazon is more likely to use robots to deliver packages within a short radius of a conventional delivery vehicle. A third offered information about an FAA report related to the subject.
Any forecaster could then write a question about upcoming FAA rulings, and link that question to the Amazon drones question. Forecasters could then adjust the strength of the link.
“George Mason University has succeeded in launching the world’s largest forecasting tournament for science and technology,” says Jason Matheny, program manager of Forecasting Science and Technology at the Intelligence Advanced Research Projects Activity, based in Washington, D.C. “SciCast can help the public and private sectors to better understand a range of scientific and technological trends.”
Collaborative but Competitive
More than 1,000 experts and enthusiasts from science and tech-related associations, universities and interest groups preregistered to participate in SciCast. The group is collaborative in spirit but also competitive. Participants are rewarded for accurate predictions by moving up on the site leaderboard, receiving more points to spend influencing subsequent prognostications. Participants can (and should) continually update their predictions as new information is presented.
SciCast has partnered with the American Association for the Advancement of Science, the Institute of Electrical and Electronics Engineers, and multiple other science and technology professional societies.
Mason members of the SciCast project team include Twardy; Kathryn Laskey, associate director for the C4I and a professor in the Department of Systems Engineering and Operations Research; associate professor of economics Robin Hanson; C4I research professor Tod Levitt; and C4I research assistant professors Anamaria Berea, Kenneth Olson and Wei Sun.
To register for SciCast, visit www.SciCast.org, or for more information, e-mail support@scicast.org. SciCast is open to anyone age 18 or older.”

6 New Year’s Strategies for Open Data Entrepreneurs


The GovLab’s Senior Advisor Joel Gurin: “Open Data has fueled a wide range of startups, including consumer-focused websites, business-to-business services, data-management tech firms, and more. Many of the companies in the Open Data 500 study are new ones like these. New Year’s is a classic time to start new ventures, and with 2014 looking like a hot year for Open Data, we can expect more startups using this abundant, free resource. For my new book, Open Data Now, I interviewed dozens of entrepreneurs and distilled six of the basic strategies that they’ve used.
1. Learn how to add value to free Open Data. We’re seeing an inversion of the value proposition for data. It used to be that whoever owned the data—particularly Big Data—had greater opportunities than those who didn’t. While this is still true in many areas, it’s also clear that successful businesses can be built on free Open Data that anyone can use. The value isn’t in the data itself but rather in the analytical tools, expertise, and interpretation that’s brought to bear. One oft-cited example: The Climate Corporation, which built a billion-dollar business out of government weather and satellite data that’s freely available for use.
2. Focus on big opportunities: health, finance, energy, education. A business can be built on just about any kind of Open Data. But the greatest number of startup opportunities will likely be in the four big areas where the federal government is focused on Open Data release. Last June’s Health Datapalooza showcased the opportunities in health. Companies like Opower in energy, GreatSchools in education, and Calcbench, SigFig, and Capital Cube in finance are examples in these other major sectors.
3. Explore choice engines and Smart Disclosure apps. Smart Disclosure – releasing data that consumers can use to make marketplace choices – is a powerful tool that can be the basis for a new sector of online startups. No one, it seems, has quite figured out how to make this form of Open Data work best, although sites like CompareTheMarket in the UK may be possible models. Business opportunities await anyone who can find ways to provide these much-needed consumer services. One example: Kayak, which competed in the crowded travel field by providing a great consumer interface, and which was sold to Priceline for $1.8 billion last year.
4. Help consumers tap the value of personal data. In a privacy-conscious society, more people will be interested in controlling their personal data and sharing it selectively for their own benefit. The value of personal data is just being recognized, and opportunities remain to be developed. There are business opportunities in setting up and providing “personal data vaults” and more opportunity in applying the many ways they can be used. Personal and Reputation.com are two leaders in this field.
5. Provide new data solutions to governments at all levels. Government datasets at the federal, state, and local level can be notoriously difficult to use. The good news is that these governments are now realizing that they need help. Data management for government is a growing industry, as Socrata, OpenGov, 3RoundStones, and others are finding, while companies like Enigma.io are turning government data into a more usable resource.
6. Look for unusual Open Data opportunities. Building a successful business by gathering data on restaurant menus and recipes is not an obvious route to success. But it’s working for Food Genius, whose founders showed a kind of genius in tapping an opportunity others had missed. While the big areas for Open Data are becoming clear, there are countless opportunities to build more niche businesses that can still be highly successful. If you have expertise in an area and see a customer need, there’s an increasingly good chance that the Open Data to help meet that need is somewhere to be found.”

Open Data in Action


Nick Sinai at the White House: “Over the past few years, the Administration has launched a series of Open Data Initiatives, which, have released troves of valuable data in areas such as health, energy, education, public safety, finance, and global development…
Today, in furtherance of this exciting economic dynamic, The Governance Lab (The GovLab) —a research institution at New York University—released the beta version of its Open Data 500 project—an initiative designed to identify, describe, and analyze companies that use open government data in order to study how these data can serve business needs more effectively. As part of this effort, the organization is compiling a list of 500+ companies that use open government data to generate new business and develop new products and services.
This working list of 500+ companies, from sectors ranging from real estate to agriculture to legal services, shines a spotlight on surprising array of innovative and creative ways that open government data is being used to grow the economy – across different company sizes, different geographies, and different industries. The project includes information about  the companies and what government datasets they have identified as critical resources for their business.
Some of examples from the Open Data 500 Project include:
  • Brightscope, a San Diego-based company that leverages data from the Department of Labor, the Security and Exchange Commission, and the Census Bureau to rate consumers’ 401k plans objectively on performance and fees, so companies can choose better plans and employees can make better decisions about their retirement options.
  • AllTuition, a  Chicago-based startup that provides services—powered by data from Department of Education on Federal student financial aid programs and student loans— to help students and parents manage the financial-aid process for college, in part by helping families keep track of deadlines, and walking them through the required forms.
  • Archimedes, a San Francisco healthcare modeling and analytics company, that leverages  Federal open data from the National Institutes of Health, the Centers for Disease Control and Prevention, and the Center for Medicaid and Medicare Services, to  provide doctors more effective individualized treatment plans and to enable patients to make informed health decisions.
You can learn more here about the project and view the list of open data companies here.

See also:
Open Government Data: Companies Cash In

NYU project touts 500 top open-data firms”

Ten thoughts for the future


The Economist: “CASSANDRA has decided to revisit her fellow forecasters Thomas Malnight and Tracey Keys to find out what their predictions are for 2014. Once again they have produced a collection of trends for the year ahead, in their “Global Trends Report”.
The possibilities of mind control seem alarming ( point 6) as do the  implications of growing income inequality (point 10). Cassandra also hopes that “unemployability” and “unemployerability”, as discussed in point 9, are contested next year (on both linguistic and social fronts).
Nevertheless, the forecasts make for intriguing reading and highlights appear below.
 1. From social everything to being smart socially
Social technologies are everywhere, but these vast repositories of digital “stuff” bury the exceptional among the unimportant. It’s time to get socially smart. Users are moving to niche networks to bring back the community feel and intelligence to social interactions. Businesses need to get smarter about extracting and delivering value from big data including challenging business models. For social networks, mobile is the great leveller. Competition for attention with other apps will intensify the battle to own key assets from identity to news sharing, demanding radical reinvention.
2. Information security: The genie is out of the bottle
Thought your information was safe? Think again. The information security genie is out of the bottle as cyber-surveillance and data mining by public and private organizations increases – and don’t forget criminal networks and whistleblowers. It will be increasingly hard to tell friend from foe in cyberspace as networks build artificial intelligence to decipher your emotions and smart cities track your every move. Big brother is here: Protecting identity, information and societies will be a priority for all.
3. Who needs shops anyway?
Retailers are facing a digitally driven perfect storm. Connectivity, rising consumer influence, time scarcity, mobile payments, and the internet of things, are changing where, when and how we shop – if smart machines have not already done the job. Add the sharing economy, driven by younger generations where experience and sustainable consumption are more important than ownership, and traditional retail models break down. The future of shops will be increasingly defined by experiential spaces offering personalized service, integrated online and offline value propositions, and pop-up stores to satisfy demands for immediacy and surprise.
4. Redistributing the industrial revolution
Complex, global value chains are being redistributed by new technologies, labour market shifts and connectivity. Small-scale manufacturing, including 3D and soon 4D printing, and shifting production economics are moving production closer to markets and enabling mass customization – not just by companies but by the tech-enabled maker movement which is going mainstream. Rising labour costs in developing markets, high unemployment in developed markets, global access to online talent and knowledge, plus advances in robotics mean reshoring of production to developed markets will increase. Mobility, flexibility and networks will define the future industrial landscape.
5. Hubonomics: The new face of globalization
As production and consumption become more distributed, hubs will characterize the next wave of “globalization.” They will specialize to support the needs of growing regional trade, emerging city states, on-line communities of choice, and the next generation of flexible workers and entrepreneurs. Underpinning these hubs will be global knowledge networks and new business and governance models based on hubonomics™, that leverage global assets and hub strengths to deliver local value.
6. Sci-Fi is here: Making the impossible possible
Cross-disciplinary approaches and visionary entrepreneurs are driving scientific breakthroughs that could change not just our lives and work but our bodies and intelligence. Labs worldwide are opening up the vast possibilities of mind control and artificial intelligence, shape-shifting materials and self-organizing nanobots, cyborgs and enhanced humans, space exploration, and high-speed, intelligent transportation. Expect great debate around the ethics, financing, and distribution of public and private benefits of these advances – and the challenge of translating breakthroughs into replicable benefits.
7. Growing pains: Transforming markets and generations
The BRICS are succumbing to Newton’s law of gravitation: Brazil’s lost it, India’s losing it, China’s paying the price for growth, Russia’s failing to make a superpower come-back, and South Africa’s economy is in disarray. In other developing markets currencies have tumbled, Arab Spring governments are still in turmoil and social unrest is increasing along with the number of failing states. But the BRICS & Beyond growth engine is far from dead. Rather it is experiencing growing pains which demand significant shifts in governance, financial systems, education and economic policies to catch up. The likely transformers will be younger generations who aspire to greater freedom and quality of life than their parents.
8. Panic versus denial: The resource gap grows, the global risks rise – but who is listening?
The complex nexus of food, water, energy and climate change presents huge global economic, environmental and societal challenges – heating up the battle to access new resources from the Arctic to fracking. Risks are growing, even as multilateral action stalls. It’s a crisis of morals, governance, and above all marketing and media, pitting crisis deniers against those who recognize the threats but are communicating panic versus reasoned solutions. Expect more debate and calls for responsible capitalism – those that are listening will be taking action at multiple levels in society and business.
9. Fighting unemployability and unemployerability
Companies are desperate for talented workers – yet unemployment rates remain high. Polarization towards higher and lower skill levels is squeezing mid-level jobs, even as employers complain that education systems are not preparing students for the jobs of the future. Fighting unemployability is driving new government-business partnerships worldwide, and will remain a critical issue given massive youth unemployment. Employers must also focus on organizational unemployerability – not being able to attract and retain desired talent – as new generations demand exciting and meaningful work where they can make an impact. If they can’t find it, they will quickly move on or swell the growing ranks of young entrepreneurs.
10. Surviving in a bipolar world: From expecting consistency to embracing ambiguity
Life is not fair, nor is it predictable.  Income inequality is growing. Intolerance and nationalism are rising but interdependence is the currency of a connected world. Pressure on leaders to deliver results today is intense but so too is the need for fundamental change to succeed in the long term. The contradictions of leadership and life are increasing faster than our ability to reconcile the often polarized perspectives and values each embodies. Increasingly, they are driving irrational acts of leadership (think the US debt ceiling), geopolitical, social and religious tensions, and individual acts of violence. Surviving in this world will demand stronger, responsible leadership comfortable with and capable of embracing ambiguity and uncertainty, as opposed to expecting consistency and predictability.”

The United States Releases its Second Open Government National Action Plan


Nick Sinai and Gayle Smith at the White House: “Since his first full day in office, President Obama has prioritized making government more open and accountable and has taken substantial steps to increase citizen participation, collaboration, and transparency in government. Today, the Obama Administration released the second U.S. Open Government National Action Plan, announcing 23 new or expanded open-government commitments that will advance these efforts even further.
…, in September 2011, the United States released its first Open Government National Action Plan, setting a series of ambitious goals to create a more open government. The United States has continued to implement and improve upon the open-government commitments set forth in the first Plan, along with many more efforts underway across government, including implementing individual Federal agency Open Government Plans. The second Plan builds on these efforts, in part through a series of key commitments highlighted in a preview report issued by the White House in October 2013, in conjunction with the Open Government Partnership Annual Summit in London.
Among the highlights of the second National Action Plan:

  • “We the People”: The White House will introduce new improvements to the We the People online petitions platform aimed at making it easier to collect and submit signatures and increase public participation in using this platform. Improvements will enable the public to perform data analysis on the signatures and petitions submitted to We the People, as well as include a more streamlined process for signing petitions and a new Application Programming Interface (API) that will allow third-parties to collect and submit signatures from their own websites.
  • Freedom of Information Act (FOIA) Modernization: The FOIA encourages accountability through transparency and represents an unwavering national commitment to open government principles. Improving FOIA administration is one of the most effective ways to make the U.S. Government more open and accountable. Today, we announced five commitments to further modernize FOIA processes, including launching a consolidated online FOIA service to improve customers’ experience, creating and making training resources available to FOIA professionals and other Federal employees, and developing common FOIA standards for agencies across government.
  • The Global Initiative on Fiscal Transparency (GIFT): The United States will join GIFT, an international network of governments and non-government organizations aimed at enhancing financial transparency, accountability, and stakeholder engagement. The U.S. Government will actively participate in the GIFT Working Group and seek opportunities to collaborate with stakeholders and champion greater fiscal openness and transparency in domestic and global spending.
  • Open Data to the Public: Over the past few years, government data has been used by journalists to uncover variations in hospital billings, by citizens to learn more about the social services provided by charities in their communities, and by entrepreneurs building new software tools to help farmers plan and manage their crops.  Building on the U.S. Government’s ongoing open data efforts, new commitments will make government data even more accessible and useful for the public, including by reforming how Federal agencies manage government data as a strategic asset, launching a new version of Data.gov to make it even easier to discover, understand, and use open government data, and expanding access to agriculture and nutrition data to help farmers and communities.
  • Participatory Budgeting: The United States will promote community-led participatory budgeting as a tool for enabling citizens to play a role in identifying, discussing, and prioritizing certain local public spending projects, and for giving citizens a voice in how taxpayer dollars are spent in their communities. This commitment will include steps by the U.S. Government to help raise awareness of the fact that participatory budgeting may be used for certain eligible Federal community development grant programs.

Other initiatives launched or expanded today include: increasing open innovation by encouraging expanded use of challenges, incentive prizes, citizen science, and crowdsourcing to harness American ingenuity, as well as modernizing the management of government records by leveraging technology to make records less burdensome to manage and easier to use and share. There are many other exciting open-government initiatives described in the second Plan — and you can view them all here.”

25 Tech Ideas for Improving Your Community


GovTech: “Ideation Nation, a technology brainstorming competition for civic solutions, announces its 25 top ideas for government technology projects…”

Top 25 Ideas

4.    Volunteer exchange
5.    Zoning iPhone app
6.    Gift card remainder charity website
7.    Electricity monitoring device rentals
8.    Integrated discovery website for camping, hiking, outdoor recreation
9.    Use the Internet to create a more direct democracy at all levels
10.  Lodge a complaint, get connected on civic issues
11.  Creativity Crowd
12.  Gaming volunteerism and rewarding impact creation
13.  Location-based app for public recycling
14.  Creating an online community map of underutilized spaces
15.  Install on-demand street lighting
16.  Create a bike share app like AirBnB
17.  Renaissance CSA
18.  Create a resource center to share collaborative projects
19.  A citizen’s board of developers
20.  My place: Our World, a civic engagement app
21.  App for food transfer
22.  Create a social networking platform for volunteers and NPOs
23.  Communitywide sharing application
24.  Common permit application
25.  Bike-pool app

Neighborhood Buzz: What people are tweeting in your city.


“Neighborhood Buzz is an experimental system that lets you find out what people in your neighborhood, and neighborhoods in cities around the country, are talking about on Twitter. When you select a neighborhood from a city map, Neighborhood Buzz displays the main topics that people in that neighborhood are discussing — politics, sports, food, etc. — and then lets you drill down to look at the individual tweets in those categories.
The system also lets you see, at a glance, how much people in different neighborhoods in a city are talking about a given topic through a “heat map” overlay on the city’s geographical map.
Neighborhood Buzz uses geo-located tweets as input. Only a small fraction of tweets currently have location tags, but the number is sufficient to provide tens or hundreds of tweets per neighborhood per day.
The topical categorizer that the system uses is statistical — which means that even though we show only the tweets we are most confident the system is categorizing correctly, it still sometimes makes mistakes. You can let us know when the system has incorrectly categorized a tweet, and eventually that will help us to improve the system.
Neighborhood Buzz was originally developed at Northwestern University Knight Lab in our joint projects class in technology and journalism, involving students and faculty from the Medill School of Journalism and the McCormick School of Engineering, Dept. of Electrical Engineering and Computer Science, at Northwestern. It was then re-architected and further developed at the Knight Lab.”

Crisis response needs to be a science, not an art


Jimmy Whitworth in the Financial Times:”…It is an imperative to offer shelter, nutrition, sanitation and medical care to those suddenly bereft of it. Without aid, humanitarian crises would cause still greater suffering. Yet admiration for the agencies that deliver relief should not blind us to the need to ensure that it is well delivered. Humanitarian responses must be founded on good evidence.
The evidence base, unfortunately, is weak. We know that storms, earthquakes and conflicts have devastating consequences for health and wellbeing, and that not responding is not an option, but we know surprisingly little about how best to go about it. Not only is evidence-based practice rare in humanitarian relief operations, it is often impossible.
Questions about how best to deliver clean water or adequate shelter, and even about which health needs should be prioritised as the most pressing, have often been barely researched. Indeed, the evidence gap is so great that the Humanitarian Practice Network has highlighted a “dire lack of credible data to help us understand just how much populations in crisis suffer, and to what extent relief operations are able to relieve that suffering”. No wonder aid responses are often characterised as messy.
Good practice often rests on past practice rather than research. The Bible of humanitarian relief is a document called the Sphere handbook, an important initiative to set minimum standards for provision of health, nutrition, sanitation and shelter. Yet analysis of the 2004 handbook has revealed that just 13 per cent of its 346 standards were supported by good evidence of relevance to health. The handbook, for example, recommended that refugee camps should prioritise measles vaccination – a worthwhile goal, but not one that should clearly be favoured over control of other infectious diseases.

Also under-researched is the question of how best to provide types of relief that everybody agrees meet essential needs. Access to clean water is a clear priority for almost all populations in crisis but little is understood about how this is most efficiently delivered. Is it best to ship bottled water to stricken areas? Are tankers of clean water more effective? Or can water purification tablets do the job? The summer floods in northern India made it clear that there is little good evidence one way or another.

Adequate shelter, too, is a human essential in all but the most benign environments but, once again, the evidence base about how best to provide it is limited. There is a school of thought that building transitional shelter from locally available materials is better in the long run than housing people under tents, tarpaulins and plastic, which if accurate would have far-reaching consequences for standard practice. But too little research has been done…
Researchers also face significant challenges to building a better evidence base. They can struggle to secure access to disaster zones when getting relief in is the priority. The timescales involved in applying for funding and ethical approval, too, make it difficult for them to move quickly enough to set up a study in the critical post-disaster period.
It is to address this that Enhancing Learning and Research for Humanitarian Assistance, with the support of the Wellcome Trust and the UK Department for International Development, recently launched an £8m research programme that investigates these issues.”

Crowdsourcing: Patient-Focused Drug Development Initiative


Press release: “Genetic Alliance and the Pharmaceutical Research and Manufacturers of America (PhRMA) announced an initiative to explore the use of a technology-enabled, crowd-sourcing approach to patient engagement as a complement to ongoing patient-focused drug development efforts under the Prescription Drug User Fee Act (PDUFA V).
As part of the reauthorization of PDUFA, the U.S. Food and Drug Administration (FDA) committed to gain the patient perspective on 20 disease areas in public meetings to be held between 2012 and 2017.
After issuing a Request for Proposals, Genetic Alliance chose advocacy organizations representing three disease areas that will be the focus of FDA patient-focused drug development public meetings in 2014 and 2015. The patient communities in these three disease areas will pilot a crowd-sourcing, technology-enabled approach to gathering input from a diverse set of patients on key benefit-risk questions.
“Using the Platform for Engaging Everyone Responsibly (PEER), there is an opportunity to demonstrate the power of a secure, crowd-sourced approach to provide additional insight into patients’ experience with a disease or condition,” stated Sharon Terry, President and CEO of Genetic Alliance. “The organizations we selected are expert at broad and diverse engagement from the very people that have a vested interest in patient-focused drug development. We are excited to engage these communities.”
For more information about this initiative, visit http://www.geneticalliance.org/pfdd.
 

New U.S. Open Government National Action Plan


The White House Fact Sheet: “In September 2011, President Obama joined the leaders of seven other nations in announcing the launch of the Open Government Partnership (OGP) – a global effort to encourage transparent, effective, and accountable governance.
Two years later, OGP has grown to 60 countries that have made more than 1000 commitments to improve the governance of more than two billion people around the globe.  OGP is now a global community of government reformers, civil society leaders, and business innovators working together to develop and implement ambitious open government reforms and advance good governance…
Today at the OGP summit in London, the United States announced a new U.S. Open Government National Action Plan that includes six ambitious new commitments that will advance these efforts even further.  Those commitments include expanding open data, modernizing the Freedom of Information Act (FOIA), increasing fiscal transparency, increasing corporate transparency, advancing citizen engagement and empowerment, and more effectively managing public resources.
Expand Open Data:  Open Data fuels innovation that grows the economy and advances government transparency and accountability.  Government data has been used by journalists to uncover variations in hospital billings, by citizens to learn more about the social services provided by charities in their communities, and by entrepreneurs building new software tools to help farmers plan and manage their crops.  Building upon the successful implementation of open data commitments in the first U.S. National Action Plan, the new Plan will include commitments to make government data more accessible and useful for the public, such as reforming how Federal agencies manage government data as a strategic asset, launching a new version of Data.gov, and expanding agriculture and nutrition data to help farmers and communities.
Modernize the Freedom of Information Act (FOIA):  The FOIA encourages accountability through transparency and represents a profound national commitment to open government principles.  Improving FOIA administration is one of the most effective ways to make the U.S. Government more open and accountable.  Today, the United States announced a series of commitments to further modernize FOIA processes, including launching a consolidated online FOIA service to improve customers’ experience and making training resources available to FOIA professionals and other Federal employees.
Increase Fiscal Transparency:   The Administration will further increase the transparency of where Federal tax dollars are spent by making federal spending data more easily available on USASpending.gov; facilitating the publication of currently unavailable procurement contract information; and enabling Americans to more easily identify who is receiving tax dollars, where those entities or individuals are located, and how much they receive.
Increase Corporate Transparency:  Preventing criminal organizations from concealing the true ownership and control of businesses they operate is a critical element in safeguarding U.S. and international financial markets, addressing tax avoidance, and combatting corruption in the United States and abroad.  Today we committed to take further steps to enhance transparency of legal entities formed in the United States.
Advance Citizen Engagement and Empowerment:  OGP was founded on the principle that an active and robust civil society is critical to open and accountable governance.  In the next year, the Administration will intensify its efforts to roll back and prevent new restrictions on civil society around the world in partnership with other governments, multilateral institutions, the philanthropy community, the private sector, and civil society.  This effort will focus on improving the legal and regulatory framework for civil society, promoting best practices for government-civil society collaboration, and conceiving of new and innovative ways to support civil society globally.
More Effectively Manage Public Resources:   Two years ago, the Administration committed to ensuring that American taxpayers receive every dollar due for the extraction of the nation’s natural resources by committing to join the Extractive Industries Transparency Initiative (EITI).  We continue to work toward achieving full EITI compliance in 2016.  Additionally, the U.S. Government will disclose revenues on geothermal and renewable energy and discuss future disclosure of timber revenues.
For more information on OGP, please visit www.opengovpartnership.org or follow @opengovpart on Twitter.”
See also White House Plans a Single FOIA Portal Across Government