Collective Intelligence in Patient Organisations

Curated on Posted on by Stefaan Verhulst
New report by Lydia Nicholas and Stefana Broadbent (Nesta):”… examines patient organisations’ ever more critical role as knowledge brokers in an increasingly complex, data-rich healthcare system.

Key findings

  • Patient organisations are important examples of collective intelligence practiced in challenging conditions with the aim of tackling complex problems.
  • With more long term conditions and multimorbidities, more data, more available options in diagnostics, treatments, and care, knowledge is becoming one of the most critical assets of patients seeking optimal care.
  • Patient organisations, working as collectives, are in an excellent position to support the work of translating, assembling and analysing the information involved in healthcare.
  • Innovative patient organisations are already supporting the development of peer relationships, driving ambitious research programmes, sharing skills and unlocking the energy and expertise of patients. But they need support from better tools to extend this critical work.

Unlike many popular examples of collective intelligence such as open source software, people coming to patient organisations are not motivated by pre-existing technical skills, but by urgent personal needs. This makes them a hugely productive site of research.

The ‘thinking challenges’ patients face are enormous and complex, involving an ever-growing store of medical information, the practical and bureaucratic skills of living with a condition. Many go beyond adherence to understanding and partaking in research.

The health care system is under strain from increasing demand and resource pressure. The NHS and other healthcare networks have committed to engage and empower patients and support them in developing expertise, enabling them to take a more active role in their own care. But knowledge tools and systems that engage only with individuals tend to exacerbate existing health care divides. Health knowledge work is hard, and requires time and resources.

In this report we argue that patient organisations have a pivotal role to play in distributing the burden and benefit of knowledge work amongst participants. They need new and better tools to support their work developing connections between the many individuals and institutions of the healthcare system, driving ambitious research programmes, and facilitating peer support….(More)

 

Crowdsourcing Solutions for Disaster Response: Examples and Lessons for the US Government

Curated on Posted on by Stefaan Verhulst

Paper by David Becker, and Samuel Bendett in Procedia Engineering: “Crowdsourcing has become a quick and efficient way to solve a wide variety of problems – technical solutions, social and economic actions, fundraising and troubleshooting of numerous issues that affect both the private and the public sectors. US government is now actively using crowdsourcing to solve complex problems that previously had to be handled by a limited circle of professionals. This paper outlines several examples of how a Department of Defense project headquartered at the National Defense University is using crowdsourcing for solutions to disaster response problems….(More)”

 

Mining citizen emotions to estimate the urgency of urban issues

Curated on Posted on by Stefaan Verhulst

Christian Masdeval and Adriano Veloso in Information Systems: “Crowdsourcing technology offers exciting possibilities for local governments. Specifically, citizens are increasingly taking part in reporting and discussing issues related to their neighborhood and problems they encounter on a daily basis, such as overflowing trash-bins, broken footpaths and lifts, illegal graffiti, and potholes. Pervasive citizen participation enables local governments to respond more efficiently to these urban issues. This interaction between citizens and municipalities is largely promoted by civic engagement platforms, such as See-Click-Fix, FixMyStreet, CitySourced, and OpenIDEO, which allow citizens to report urban issues by entering free text describing what needs to be done, fixed or changed. In order to develop appropriate action plans and priorities, government officials need to figure out how urgent are the reported issues. In this paper we propose to estimate the urgency of urban issues by mining different emotions that are implicit in the text describing the issue. More specifically, a reported issue is first categorized according to the emotions expressed in it, and then the corresponding emotion scores are combined in order to produce a final urgency level for the reported issue. Our experiments use the SeeClickFix hackathon data and diverse emotion classification algorithms. They indicate that (i) emotions can be categorized efficiently with supervised learning algorithms, and (ii) the use of citizen emotions leads to accurate urgency estimates. Further, using additional features such as the type of issue or its author leads to no further accuracy gains….(More)”

Science to the people!

Curated on Posted on by Stefaan Verhulst

John Magan, at Digital Agenda for Europe:” …I attended the 2nd Barcelona Citizen Science Day organised as part of the city’s Science Festival. The programme was full and varied and in itself a great example of the wonderful world of do-it-yourself, hands-on, accessible, practical science. A huge variety of projects (see below) was delivered with enthusiasm, passion, and energy!

The day was rounded off with a presentation by Public Lab who showed how a bit of technical ingenuity like cheap cameras on kites and balloons can be used to keep governments and large businesses more honest and accountable – for example, data they collected is being used in court cases against BP for the Deepwater Horizon oil spill in the Gulf of Mexico.

But what was most striking is the empowerment that these Citizen Science projects give individuals to do things for themselves – to take measures to monitor, protect or improve their urban or rural environment; to indulge their curiosity or passions; to improve their finances; to work with others; to do good while having serious fun….If you want to have a deeper look, here are some of the many projects presented on a great variety of themes:

Water

Wildlife

Climate

Arts

Public health

Human

A nice booklet capturing them is available and there’s aslo a summary in Catalan only.

Read more about citizen science in the European Commission….(More)”

Open Innovation, Open Science, Open to the World

Curated on Posted on by Stefaan Verhulst

Speech by Carlos Moedas, EU Commissioner for Research, Science and Innovation: “On 25 April this year, an earthquake of magnitude 7.3 hit Nepal. To get real-time geographical information, the response teams used an online mapping tool called Open Street Map. Open Street Map has created an entire online map of the world using local knowledge, GPS tracks and donated sources, all provided on a voluntary basis. It is open license for any use.

Open Street Map was created by a 24 year-old computer science student at University College London in 2004, has today 2 million users and has been used for many digital humanitarian and commercial purposes: From the earthquakes in Haiti and Nepal to the Ebola outbreak in West Africa.

This story is one of many that demonstrate that we are moving into a world of open innovation and user innovation. A world where the digital and physical are coming together. A world where new knowledge is created through global collaborations involving thousands of people from across the world and from all walks of life.

Ladies and gentlemen, over the next two days I would like us to chart a new path for European research and innovation policy. A new strategy that is fit for purpose for a world that is open, digital and global. And I would like to set out at the start of this important conference my own ambitions for the coming years….

Open innovation is about involving far more actors in the innovation process, from researchers, to entrepreneurs, to users, to governments and civil society. We need open innovation to capitalise on the results of European research and innovation. This means creating the right ecosystems, increasing investment, and bringing more companies and regions into the knowledge economy. I would like to go further and faster towards open innovation….

I am convinced that excellent science is the foundation of future prosperity, and that openness is the key to excellence. We are often told that it takes many decades for scientific breakthroughs to find commercial application.

Let me tell you a story which shows the opposite. Graphene was first isolated in the laboratory by Profs. Geim and Novoselov at the University of Manchester in 2003 (Nobel Prizes 2010). The development of graphene has since benefitted from major EU support, including ERC grants for Profs. Geim and Novoselov. So I am proud to show you one of the new graphene products that will soon be available on the market.

This light bulb uses the unique thermal dissipation properties of graphene to achieve greater energy efficiencies and a longer lifetime that LED bulbs. It was developed by a spin out company from the University of Manchester, called Graphene Lighting, as is expected to go on sale by the end of the year.

But we must not be complacent. If we look at indicators of the most excellent science, we find that Europe is not top of the rankings in certain areas. Our ultimate goal should always be to promote excellence not only through ERC and Marie Skłodowska-Curie but throughout the entire H2020.

For such an objective we have to move forward on two fronts:

First, we are preparing a call for European Science Cloud Project in order to identify the possibility of creating a cloud for our scientists. We need more open access to research results and the underlying data. Open access publication is already a requirement under Horizon 2020, but we now need to look seriously at open data…

When innovators like LEGO start fusing real bricks with digital magic, when citizens conduct their own R&D through online community projects, when doctors start printing live tissues for patients … Policymakers must follow suit…(More)”

Improving Crowdsourcing and Citizen Science as a Policy Mechanism for NASA

Curated on Posted on by Stefaan Verhulst

Paper by Balcom Brittany: “This article examines citizen science projects, defined as “a form of open collaboration where members of the public participate in the scientific process, including identifying research questions, collecting and analyzing the data, interpreting the results, and problem solving,” as an effective and innovative tool for National Aeronautics and Space Administration (NASA) science in line with the Obama Administration’s Open Government Directive. Citizen science projects allow volunteers with no technical training to participate in analysis of large sets of data that would otherwise constitute prohibitively tedious and lengthy work for research scientists. Zooniverse.com hosts a multitude of popular space-focused citizen science projects, many of which have been extraordinarily successful and have enabled new research publications and major discoveries. This article takes a multifaceted look at such projects by examining the benefits of citizen science, effective game design, and current desktop computer and mobile device usage trends. It offers suggestions of potential research topics to be studied with emerging technologies, policy considerations, and opportunities for outreach. This analysis includes an overview of other crowdsourced research methods such as distributed computing and contests. New research and data analysis of mobile phone usage, scientific curiosity, and political engagement among Zooniverse.com project participants has been conducted for this study…(More)”

Rethinking Smart Cities From The Ground Up

Curated on Posted on by Stefaan Verhulst

New report byTom Saunders and Peter Baeck (NESTA): “This report tells the stories of cities around the world – from Beijing to Amsterdam, and from London to Jakarta – that are addressing urban challenges by using digital technologies to engage and enable citizens.

Key findings

  • Many ‘top down’ smart city ideas have failed to deliver on their promise, combining high costs and low returns.
  • ‘Collaborative technologies’ offer cities another way to make smarter use of resources, smarter ways of collecting data and smarter ways to make decisions.
  • Collaborative technologies can also help citizens themselves shape the future of their cities.
  • We have created five recommendations for city government who want to make their cities smarter.

As cities bring people together to live, work and play, they amplify their ability to create wealth and ideas. But scale and density also bring acute challenges: how to move around people and things; how to provide energy; how to keep people safe.

‘Smart cities’ offer sensors, ‘big data’ and advanced computing as answers to these challenges, but they have often faced criticism for being too concerned with hardware rather than with people.

In this report we argue that successful smart cities of the future will combine the best aspects of technology infrastructure while making the most of the growing potential of ‘collaborative technologies’, technologies that enable greater collaboration between urban communities and between citizens and city governments.

How will this work in practice? Drawing on examples from all around the world we investigate four emerging methods which are helping city governments engage and enable citizens: the collaborative economy, crowdsourcing data, collective intelligence and crowdfunding.

Policy recommendations

  1. Set up a civic innovation lab to drive innovation in collaborative technologies.
  2. Use open data and open platforms to mobilise collective knowledge.
  3. Take human behaviour as seriously as technology.
  4. Invest in smart people, not just smart technology.
  5. Spread the potential of collaborative technologies to all parts of society….(More)”

Harnessing the Crowd to Solve Healthcare

Curated on Posted on by Stefaan Verhulst

PSFK Labs: “While being sick is never a good situation to be in, the majority of people can still take solace in the fact that modern medicine will be able to diagnose their problem and get them on the path to a quick recovery. For a small percentage of patients, however, simply finding out what ails them can be a challenge. Despite countless visits to specialists and mounting costs, these individuals can struggle for years to find out any reliable information about their illness.

This is only exacerbated by the fact that in a heavily regulated industry like healthcare, words like “personalization,” “transparency” and “collaboration” are near impossibilities, leaving these patients locked into a system that can’t care for them. Enter CrowdMed, an online platform that uses the combined knowledge of its community to overcome these obstacles, getting people the answers and treatment they need.

…we spoke with Jared Heyman, the company’s founder, to understand how the crowd can deliver unprecedented efficiencies to a system sorely in need of them…. “CrowdMed harnesses the wisdom of crowds to solve the world’s most difficult medical cases online. Let’s say that you’ve been bouncing doctor to doctor, but don’t yet have a definitive diagnosis or treatment plan. You can submit your case on our site by answering an in‑depth patient questionnaire, uploading relevant medical records, diagnostic test results or even medical images. We expose your case to our community of currently over 15,000 medical detectives. These are people mostly with medical backgrounds who enjoy solving these challenges.

We have about a 70 percent success rate, bringing patients closer to a direct diagnosis or cure and we do so in a very small fraction of the time and cost of what it would take through the traditional medical system….

Every entrepreneur builds upon the tools and technologies that preceded them. I think that CrowdMed needed the Internet. It needed Facebook. It needed Wikipedia. It needed Quora, and other companies or products that have proven that you can trust in the wisdom of the crowd. I think we’re built upon the shoulders of these other companies.

We looked at all these other companies that have proven the value of social networks through crowdsourcing, and that’s inspired us to do what we do. It’s been instructive for us in the best way to do it, and it’s also prepared society, psychologically and culturally, for what we’re doing. All these things were important….(More)”

What cybersecurity can learn from citizen science

Curated on Posted on by Stefaan Verhulst

Lysa Myers in CSMonitor: “It used to be that identifying, analyzing, and cataloging the natural world was considered the bailiwick of professional experts and academics, as it was deemed too complex – or perhaps too dusty and obscure – to be done by amateurs.

But as anyone who has observed an online forum thread dissecting the minutiae of geek culture can attest, hobbyists can be remarkably thorough in their exploration of topics they are passionate about. And it is often a point of pride to pick the subject that is the least conventional or popular.

The idea of citizen science is to include amateur science enthusiasts in the collection and processing of data. Thanks to the Internet, we’ve seen a surge in the number of self-taught experts in a variety of subjects. New participation platforms are social and gamified – utilizing people’s desire to compete or collaborate with others who share their passion.

How this process plays out differs from one app to the next, according to their needs: StarDust@Home asks volunteers to help sort through samples captured by the Stardust spacecraft when it flew through the coma of comet Wild 2 in 2004. They do this by viewing movies of the contents of the aerogel tiles that were used as collectors.

The security community is ripe for using the citizen science in similar ways to these. Most antimalware vendors make use of customer samples for adding detection and cleaning to their products. Many security companies use customers’ reports to gather file reputation, telemetry and prevalence data. And bug reports come from researchers of all ages and education levels – not just professional security researchers. “Month of Bug” events are a more controversial way that security is gamified. Could security companies or organizations be doing more to engage enthusiasts to help improve our response to security issues?

It could be argued that the stuff of security research – especially malware research – is potentially harmful in the hands of amateurs and should be handled only by seasoned professionals. Not only that, security is an adversarial system where the criminals would likely try to game the system to improve their profits. These are important concerns that would need to be addressed.

But the citizen science approach provides good lessons…(More)”

How Crowdsourcing Can Help Us Fight ISIS

Curated on Posted on by Stefaan Verhulst

 at the Huffington Post: “There’s no question that ISIS is gaining ground. …So how else can we fight ISIS? By crowdsourcing data – i.e. asking a relevant group of people for their input via text or the Internet on specific ISIS-related issues. In fact, ISIS has been using crowdsourcing to enhance its operations since last year in two significant ways. Why shouldn’t we?

First, ISIS is using its crowd of supporters in Syria, Iraq and elsewhere to help strategize new policies. Last December, the extremist group leveraged its global crowd via social media to brainstorm ideas on how to kill 26-year-old Jordanian coalition fighter pilot Moaz al-Kasasba. ISIS supporters used the hashtag “Suggest a Way to Kill the Jordanian Pilot Pig” and “We All Want to Slaughter Moaz” to make their disturbing suggestions, which included decapitation, running al-Kasasba over with a bulldozer and burning him alive (which was the winner). Yes, this sounds absurd and was partly a publicity stunt to boost ISIS’ image. But the underlying strategy to crowdsource new strategies makes complete sense for ISIS as it continues to evolve – which is what the US government should consider as well.

In fact, in February, the US government tried to crowdsource more counterterrorism strategies. Via its official blog, DipNote, the State Departmentasked the crowd – in this case, US citizens – for their suggestions for solutions to fight violent extremism. This inclusive approach to policymaking was obviously important for strengthening democracy, with more than 180 entries posted over two months from citizens across the US. But did this crowdsourcing exercise actually improve US strategy against ISIS? Not really. What might help is if the US government asked a crowd of experts across varied disciplines and industries about counterterrorism strategies specifically against ISIS, also giving these experts the opportunity to critique each other’s suggestions to reach one optimal strategy. This additional, collaborative, competitive and interdisciplinary expert insight can only help President Obama and his national security team to enhance their anti-ISIS strategy.

Second, ISIS has been using its crowd of supporters to collect intelligence information to better execute its strategies. Since last August, the extremist group has crowdsourced data via a Twitter campaign specifically on Saudi Arabia’s intelligence officials, including names and other personal details. This apparently helped ISIS in its two suicide bombing attacks during prayers at a Shite mosque last month; it also presumably helped ISIS infiltrate a Saudi Arabian border town via Iraq in January. This additional, collaborative approach to intelligence collection can only help President Obama and his national security team to enhance their anti-ISIS strategy.

In fact, last year, the FBI used crowdsourcing to spot individuals who might be travelling abroad to join terrorist groups. But what if we asked the crowd of US citizens and residents to give us information specifically on where they’ve seen individuals get lured by ISIS in the country, as well as on specific recruitment strategies they may have noted? This might also lead to more real-time data points on ISIS defectors returning to the US – who are they, why did they defect and what can they tell us about their experience in Syria or Iraq? Overall, crowdsourcing such data (if verifiable) would quickly create a clearer picture of trends in recruitment and defectors across the country, which can only help the US enhance its anti-ISIS strategies.

This collaborative approach to data collection could also be used in Syria and Iraq with texts and online contributions from locals helping us to map ISIS’ movements….(More)”