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.
From Crowdsourcing to Crowdseeding: The Cutting Edge of Empowerment?
New chapter by Peter van der Windt in the book Bits and Atoms: Information and Communication Technology in Areas of Limited Statehood: “In 2009 Columbia University launched a pilot project in the Kivus region of the Democratic Republic of Congo called Voix des Kivus. The point of the project was to examine the potential for using SMS technology to gather conflict event data in real-time. Given previous experiences in Eastern Congo, the research team expected that collecting high-quality event data in Eastern Congo in the traditional way (sending out enumerator teams) would be challenging, while using traditional approaches to collect event information in real-time would be impossible. As a result the team launched an SMS-based pilot project called Voix des Kivus. Parts of the Kivus have cellphone coverage, and cellphones are relatively inexpensive. Moreover, while enumerator teams have problems crossing bad roads or washed-away bridges, phone-signals do not. Finally, an SMS-message sent is received
instantaneously.
The Voix des Kivus project used a “crowdseeding” approach which combines the innovations of crowdsourcing with standard principles of survey research and
statistical analysis. It used a sampling frame, selected sites through systematic random sampling, and identified specific reporters in each site. Researchers then
“seeded” mobile phones to select “phoneholders” and trained them on how to use the system and what to report. Only these pre-selected reporters could contribute
into the system, rather than anyone with a mobile phone or connection of some sort, as it the case with standard crowdsourcing platforms.
This chapter draws on this experience to discuss how such ICT projects might empower populations by enabling the collection and distribution of information as an alternative mechanism of governance…”
Selected Readings on Crowdsourcing Opinions and Ideas
The Living Library’s Selected Readings series seeks to build a knowledge base on innovative approaches for improving the effectiveness and legitimacy of governance. This curated and annotated collection of recommended works on the topic of crowdsourcing was originally published in 2013.
As technological advances give individuals greater ability to share their opinions and ideas with the world, citizens are increasingly expecting government to consult with them and factor their input into the policy-making process. Moving away from the representative democracy system created in a less connected time, e-petitions; participatory budgeting (PB), a collaborative, community-based system for budget allocation; open innovation initiatives; and Liquid Democracy, a hybrid of direct and indirect democracy, are allowing citizens to make their voices heard between trips to the ballot box.
Selected Reading List (in alphabetical order)
- Eirikur Bergmann — Reconstituting Iceland — Constitutional Reform Caught in a New Critical Order in the Wake of Crisis — a paper exploring the history and of Iceland’s “Crowdsourced Constitution.”
- Oliver Gassmann, Ellen Enkel and Henry Chesbrough — The Future of Open Innovation — a paper discussing opportunities and trends related to open innovation.
- Hollie Russon Gilman — The Participatory Turn: Participatory Budgeting Comes to America — a dissertation focused on both the recent history of international PB efforts and the largely untapped potential for PB in the United States.
- Alexa Kasdan and Lindsay Cattell — New Report on NYC Participatory Budgeting — a research and evaluation report on the 2011 PB process undertaken in New York City.
- Kai Masser — Participatory Budgeting as Its Critics See It — a critical look at PB drawing on lessons learned from a German pilot initiative.
- OECD — Citizens as Partners: Information, Consultation and Public Participation in Policy-making — this policy report examines the use of crowdsourcing in OECD countries to act as a new form of representation and participation.
- Angel Tchorbadjiiski — Liquid Democracy — a thesis on the potential benefits of and challenges to the wider use of Liquid Democracy.
Annotated Selected Reading List (in alphabetical order)
Bergmann, Eirikur. “Reconstituting Iceland – Constitutional Reform Caught in a New Critical Order in the Wake of Crisis.” in Academia.edu, (presented at the Political Legitimacy and the Paradox of Regulation, Leiden University, 2013). http://bit.ly/1aaTVYP.
- This paper explores the tumultuous history of Iceland’s “Crowdsourced Constitution.” The since-abandoned document was built upon three principles: distribution of power, transparency and responsibility.
- Even prior to the draft being dismantled through political processes, Bergmann argues that an overenthusiastic public viewed the constitution as a stronger example of citizen participation than it really was: “Perhaps with the delusion of distance the international media was branding the production as the world’s first ‘crowdsourced’ constitution, drafted by the interested public in clear view for the world to follow…This was however never a realistic description of the drafting. Despite this extraordinary open access, the Council was not able to systematically plough through all the extensive input as [it] only had four months to complete the task.”
- Bergmann’s paper illustrates the transition Iceland’s constitution has undertaken in recent years: moving form a paradigmatic example of crowdsourcing opinions to a demonstration of the challenges inherent in bringing more voices into a realm dominated by bureaucracy and political concerns.
Gassmann, Oliver, Ellen Enkel, and Henry Chesbrough. “The Future of Open Innovation.” R&D Management 40, no. 3 (2010): 213– 221. http://bit.ly/1bk4YeN.
- In this paper – an introduction to a special issue on the topic – Gassmann, Enkel and Chesbrough discuss the evolving trends in open innovation. They define the concept, referencing previous work by Chesbrough et al., as “…the purposive inflows and outflows of knowledge to accelerate internal innovation, and expand the markets for external use of innovation, respectively.”
- In addition to examining the existing literature for the field, the authors identify nine trends that they believe will define the future of open innovation for businesses, many of which can also be applied to governing insitutions:
- Industry penetration: from pioneers to mainstream
- R&D intensity: from high to low tech
- Size: from large firms to SMEs
- Processes: from stage gate to probe-and-learn
- Structure: from standalone to alliances
- Universities: from ivory towers to knowledge brokers Processes: from amateurs to professionals
- Content: from products to services
- Intellectual property: from protection to a tradable good
Gilman, Hollie Russon. “The Participatory Turn: Participatory Budgeting Comes to America.” Harvard University, 2012. https://bit.ly/2BhaeVv.
- In this dissertation, Gilman argues that participatory budgeting (PB) produces better outcomes than the status quo budget process in New York, while also transforming how those who participate understand themselves as citizens, constituents, Council members, civil society leaders and community stakeholders.
- The dissertation also highlights challenges to participation drawing from experience and lessons learned from PB’s inception in Porto Alege, Brazil in 1989. While recognizing a diversity of challenges, Gilman ultimately argues that, “PB provides a viable and informative democratic innovation for strengthening civic engagement within the United States that can be streamlined and adopted to scale.”
Kasdan, Alexa, and Cattell, Lindsay. “New Report on NYC Participatory Budgeting.” Practical Visionaries. Accessed October 21, 2013. https://bit.ly/2Ek8bTu.
- This research and evaluation report is the result of surveys, in-depth interviews and observations collected at key points during the 2011 participatory budgeting (PB) process in New York City, in which “[o]ver 2,000 community members were the ones to propose capital project ideas in neighborhood assemblies and town hall meetings.”
- The PBNYC project progressed through six main steps:
- First Round of Neighborhood Assemblies
- Delegate Orientations
- Delegate Meetings
- Second Round of Neighborhood Assemblies
- Voting
- Evaluation, Implementation & Monitoring
- The authors also discuss the varied roles and responsibilities for the divers stakeholders involved in the process:
- Community Stakeholders
- Budget Delegates
- District Committees
- City-wide Steering Committee Council Member Offices
Masser, Kai. “Participatory Budgeting as Its Critics See It.” Burgerhaushalt, April 30, 2013. http://bit.ly/1dppSxW.
- This report is a critique of the participatory budgeting (PB) process, focusing on lessons learned from the outcomes of a pilot initiative in Germany.
- The reports focuses on three main criticisms leveled against PB:
- Participatory Budgeting can be a time consuming process that is barely comprehensive to the people it seeks to engage, as a result there is need for information about the budget, and a strong willingness to participate in preparing it.
- Differences in the social structure of the participants inevitably affect the outcome – the process must be designed to avoid low participation or over-representation of one group.
- PB cannot be sustained over a prolonged period and should therefore focus on one aspect of the budgeting process. The article points to outcomes that show that citizens may find it considerably more attractive to make proposals on how to spend money than on how to save it, which may not always result in the best outcomes.
OECD. “Citizens as Partners: Information, Consultation and Public Participation in Policy-making.” The IT Law Wiki. http://bit.ly/1aIGquc.
- This OECD policy report features discussion on the concept of crowdsourcing as a new form or representation and public participation in OECD countries, with the understanding that it creates avenues for citizens to participate in public policy-making within the overall framework of representative democracy.
- The report provides a wealth of comparative information on measures adopted in OECD countries to strengthen citizens’ access to information, to enhance consultation and encourage their active participation in policy-making.
Tchorbadjiiski, Angel. “Liquid Democracy.” Rheinisch-Westf alische Technische Hochschule Aachen Informatik 4 ComSy, 2012. http://bit.ly/1eOsbIH.
- This thesis presents discusses how Liquid Democracy (LD) makes it for citizens participating in an election to “either take part directly or delegate [their] own voting rights to a representative/expert. This way the voters are not limited to taking one decision for legislative period as opposed to indirect (representative) democracy, but are able to actively and continuously take part in the decision-making process.”
- Tchorbadjiiski argues that, “LD provides great flexibility. You do not have to decide yourself on the program of a political party, which only suits some aspects of your opinion.” Through LD, “all voters can choose between direct and indirect democracy creating a hybrid government form suiting their own views.”
- In addition to describing the potential benefits of Liquid Democracy, Tchorbadjiiski focuses on the challenge of maintaining privacy and security in such a system. He proposes a platform that “allows for secure and anonymous voting in such a way that it is not possible, even for the system operator, to find out the identity of a voter or to prevent certain voters (for example minority groups) from casting a ballot.”
Scientific Expertise and Open Government in the Digital Era
New paper by Alessandro Spina: “This paper presents some reflections on how the collaborative and crowdsourcing practices of Open Government could be integrated in the activities of EFSA and other EU agencies. First, it highlights the informational capabilities of EU Agencies, and it examines the institutional models adopted to obtain technical and scientific expertise in their decision-making processes. The paper moves on to describe the main features of Open Government, in particular the transparent and collective peer-production mechanism used in new digital products such as the open-source software or Wikipedia. Finally, the paper presents a series of arguments highlighting the benefits of the Open Government paradigm for expert regulatory bodies in the EU. It argues that Open Government could provide a concrete application to the principle set in Article 298 TFEU of “open, efficient and independent” EU public administrations.”
Candy Crush-style game helps scientists fight tree disease
Springwise: “The Sainsbury Laboratory has turned genome research into a game called Fraxinus, which could help find a cure for the Chalara ash dieback disease. Crowdsourcing science research isn’t a new thing — we’ve already seen Cancer Research UK enable anyone to help out by identifying cells through its ClicktoCure site. Now the Sainsbury Laboratory has turned genome research into a game called Fraxinus, which could help find a cure for the Chalara ash dieback disease.
Developed as a Facebook app, the game presents players with a number of colored, diamond-shaped blocks that represent the nucleotides that make up the DNA of ash trees. In each round, they have to try to match a particular string of nucleotides as best they can. Users with the nearest match get to ‘claim’ that pattern, but it can be stolen by others with a better sequence. Each sequence gives scientists insight into which genes may be immune from the disease and gives them a better shot at replenishing ash woodland.
According to the creators, Fraxinus has proved an addictive hit with young players, who are helping a good cause while playing. Are there other ways to gamify crowdsourced science research? Website: www.tsl.ac.uk“
What future do you want? Commission invites votes on what Europe could look like in 2050 to help steer future policy and research planning
European Commission – MEMO: “Vice-President Neelie Kroes, responsible for the Digital Agenda, is inviting people to join a voting and ranking process on 11 visions of what the world could look like in 20-40 years. The Commission is seeking views on living and learning, leisure and working in Europe in 2050, to steer long-term policy or research planning.
The visions have been gathered over the past year through the Futurium, an online debate platform that allows policymakers to not only consult citizens, but to collaborate and “co-create” with them, and at events throughout Europe. Thousands of thinkers – from high school students, to the Erasmus Students Network; from entrepreneurs and internet pioneers to philosophers and university professors, have engaged in a collective inquiry – a means of crowd-sourcing what our future world could look like.
Eleven over-arching themes have been drawn together from more than 200 ideas for the future. From today, everyone is invited to join the debate and offer their rating and rankings of the various ideas. The results of the feedback will help the European Commission make better decisions about how to fund projects and ideas that both shape the future and get Europe ready for that future….
The Futurium is a foresight project run by DG CONNECT, based on an open source approach. It develops visions of society, technologies, attitudes and trends in 2040-2050 and use these, for example as potential blueprints for future policy choices or EU research and innovation funding priorities.
It is an online platform developed to capture emerging trends and enable interested citizens to co-create compelling visions of the futures that matter to them.
This crowd-sourcing approach provides useful insights on:
- vision: where people want to go, how desirable and likely are the visions posted on the platform;
- policy ideas: what should ideally be done to realise the futures; the possible impacts and plausibility of policy ideas;
- evidence: scientific and other evidence to support the visions and policy ideas.
….
Connecting policy making to people: in an increasingly connected society, online outreach and engagement is an essential response to the growing demand for participation, helping to capture new ideas and to broaden the legitimacy of the policy making process (IP/10/1296). The Futurium is an early prototype of a more general policy-making model described in the paper “The Futurium—a Foresight Platform for Evidence-Based and Participatory Policymaking“.
The Futurium was developed to lay the groundwork for future policy proposals which could be considered by the European Parliament and the European Commission under their new mandates as of 2014. But the Futurium’s open, flexible architecture makes it easily adaptable to any policy-making context, where thinking ahead, stakeholder participation and scientific evidence are needed.”
New Report: Federal Ideation Program: Challenges and Best Practices
New Report by Professor Gwanhoo Lee for the IBM Center for The Business of Government: “Ideation is the process of generating new ideas or solutions using crowdsourcing technologies, and it is changing the way federal government agencies innovate and solve problems. Ideation tools use online brainstorming or social voting platforms to submit new ideas, search previously submitted ideas, post questions and challenges, discuss and expand on ideas, vote them up or down and flag them.
This report examines the current status, challenges, and best practices of federal internal ideation programs made available exclusively to employees. Initial experiences from a variety of agencies show that these ideation tools hold great promise in engaging employees and stakeholders in problem-solving.
While ideation programs offer promising benefits, making innovation an aspect of everyone’s job is very hard to achieve. Given that these ideation tools and programs are still relatively new, agencies have not yet figured out the best practices and often do not know what to expect during the implementation process. This report seeks to fill this gap.
Based on field research and a literature review, the report describes four federal internal ideation programs, including IdeaHub (Department of Transportation), the Sounding Board (the Department of State), IdeaFactory (Department of Homeland Security), and CDC IdeaLab (Centers for Disease Control and Prevention, Department of Health and Human Services).
Four important challenges are associated with the adoption and implementation of federal internal ideation programs. These are: managing the ideation process and technology; managing cultural change; managing privacy, security and transparency; and managing use of the ideation tool.
Federal government agencies have been moving in the right direction by embracing these tools and launching ideation programs in boosting employee-driven innovation. However, many daunting challenges and issues remain to be addressed. For a federal agency to sustain its internal ideation program, it should note the following:
Recommendation One: Treat the ideation program not as a management fad but as a vehicle to reinvent the agency.
Recommendation Two: Institutionalize the ideation program.
Recommendation Three: Make the ideation team a permanent organizational unit.
Recommendation Four: Document ideas that are implemented.Quantify their impact and demonstrate the return on investment.Share the return with the employees through meaningful rewards.
Recommendation Five: Assimilate and integrate the ideation program into the mission-critical administrative processes.
Recommendation Six: Develop an easy-to-use mobile app for the ideation system.
Recommendation Seven: Keep learning from other agencies and even from commercial organizations.”
Mozilla Location Service: crowdsourcing data to help devices find your location without GPS
“The Mozilla Location Service is an experimental pilot project to provide geolocation lookups based on publicly observable cell tower and WiFi access point information. Currently in its early stages, it already provides basic service coverage of select locations thanks to our early adopters and contributors.
While many commercial services exist in this space, there’s currently no large public service to provide this crucial part of any mobile ecosystem. Mobile phones with a weak GPS signal and laptops without GPS hardware can use this service to quickly identify their approximate location. Even though the underlying data is based on publicly accessible signals, geolocation data is by its very nature personal and privacy sensitive. Mozilla is committed to improving the privacy aspects for all participants of this service offering.
If you want to help us build our service, you can install our dedicated Android MozStumbler and enjoy competing against others on our leaderboard or choose to contribute anonymously. The service is evolving rapidly, so expect to see a more full featured experience soon. For an overview of the current experience, you can head over to the blog of Soledad Penadés, who wrote a far better introduction than we did.
We welcome any ideas or concerns about this project and would love to hear any feedback or experience you might have. Please contact us either on our dedicated mailing list or come talk to us in our IRC room #geo on Mozilla’s IRC server.
For more information please follow the links on our project page.”
The GovLab Academy: A Community and Platform for Learning and Teaching Governance Innovations
Press Release: “Today the Governance Lab (The GovLab) launches The GovLab Academy at the Open Government Partnership Annual Meeting in London.
Available at www.thegovlabacademy.org, the Academy is a free online community for those wanting to teach and learn how to solve public problems and improve lives using innovations in governance. A partnership between The GovLab at New York University and MIT Media Lab’s Online Learning Initiative, the site launching today offers curated videos, podcasts, readings and activities designed to enable the purpose driven learner to deepen his or her practical knowledge at her own pace.
The GovLab Academy is funded by a grant from the John S. and James L. Knight Foundation. “The GovLab Academy addresses a growing need among policy makers at all levels – city, federal and global – to leverage advances in technology to govern differently,” says Carol Coletta, Vice President of Community and National Initiatives at the Knight Foundation. “By connecting the latest technological innovations to a community of willing mentors, the Academy has the potential to catalyze more experimentation in a sector that badly needs it.”
Initial topics include using data to improve policymaking and cover the role of big data, urban analytics, smart disclosure and open data in governance. A second track focuses on online engagement and includes practical strategies for using crowdsourcing to solicit ideas, organize distributed work and gather data. The site features both curated content drawn from a variety of sources and original interviews with innovators from government, civil society, the tech industry, the arts and academia talking about their work around the world implementing innovations in practice, what worked and what didn’t, to improve real people’s lives.
Beth Noveck, Founder and Director of The GovLab, describes its mission: “The Academy is an experiment in peer production where every teacher is a learner and every learner a teacher. Consistent with The GovLab’s commitment to measuring what works, we want to measure our success by the people contributing as well as consuming content. We invite everyone with ideas, stories, insights and practical wisdom to contribute to what we hope will be a thriving and diverse community for social change”.”
Crowdsourcing the sounds of cities’ quiet spots
Springwise: “Finding a place in the city to collect your thoughts and enjoy some quietude is a rare thing. While startups such as Breather are set to open up private spaces for work and relaxation in several US cities, a new project called Stereopublic is hoping to map the ones already there, recruiting citizens to collect the sounds of those spaces.
Participants can download the free iOS app created by design studio Freerange Future, which enables them to become an ‘earwitness’. When they discover a tranquil spot in their city, they can use their GPS co-ordinates to record its exact location on the Stereopublic map, as well as record a 30-second sound clip and take a photo to give others a better idea of what it’s like. The team then works with sound experts to create quiet tours of each participating city, which currently includes Adelaide, London, LA, New York City, Singapore and 26 other global cities. The video below offers some more information about the project: