Collection

Ebola: Call for more sharing of scientific data

Curated on February 5, 2015August 3, 2018 by Stefaan Verhulst

Helen Briggs at the BBC: “The devastation left by the Ebola virus in west Africa raises many questions for science, policy and international development. One issue that has yet to receive widespread media attention is the handling of genetic data on the virus. By studying its code, scientists can trace how Ebola leapt across borders, and how, like all viruses, it is constantly evolving and changing.

Yet, researchers have been privately complaining for months about the scarcity of genetic information about the virus that is entering the public domain….

At the heart of the issue is the scientific process. The main way scientists are rewarded for their work is through the quality and number of research papers they publish.
Data is only revealed for scrutiny by the wider scientific community when the research is published, which can be a lengthy process….
Dr Emma Thomson of the MRC-University of Glasgow centre for virus research says all journals publishing papers on Ebola must insist all data is released, as a collaborative approach could save lives.
“At the time of publication is really important – these days most people do it but not always and journals often insist (but not always),” she told me.
“A lot of Ebola sequencing has happened but the data hasn’t always been uploaded.
“It’s an international emergency so people need to get the data out there to allow it to be analysed in different ways by different labs.”
In the old days of the public private race to decode the first human genome, the mood was one of making data accessible to all for the good of science and society.
Genetic science and public attitudes have moved on, but in the case of Ebola, some are saying it may be time for a re think.
As Prof Paul Hunter, Professor of health protection at the University of East Anglia, put it: “It would be tragic if, during a crisis like this, data was not being adequately shared with the public health community.
“The rapid sharing of data could help enable more rapid control of the outbreak.”…(More)”

Innovation Labs: Leveraging Openness for Radical Innovation?

Curated on February 4, 2015August 3, 2018 by Stefaan Verhulst

Paper by Gryszkiewicz, Lidia and Lykourentzou, Ioanna and Toivonen, Tuukka: “A growing range of public, private and civic organisations, from Unicef through Nesta to Tesco, now run units known as ‘innovation labs’. The hopeful assumption they share is that labs, by building on openness among other features, can generate promising solutions to grand challenges of the future. Despite their seeming proliferation and popularisation, the underlying innovation paradigm embodied by labs has so far received scant academic attention. This is a missed opportunity, because innovation labs are potentially fruitful vehicles for leveraging openness for radical innovation. Indeed, they not only strive to span organisational, sectoral and geographical boundaries by bringing a variety of uncommon actors together to embrace radical ideas and out-of-the box thinking, but they also aim to apply the concept of openness throughout the innovation process, including the experimentation and development phases. While the phenomenon of labs clearly forms part of a broader trend towards openness, it seems to transcend traditional conceptualisations of open innovation (Chesbrough, 2006), open strategy (Whittington et al., 2011), open science (David, 1998) or open government (Janssen et al., 2012). What are innovation labs about, how do they differ from other innovation efforts and how do they embrace openness to create breakthrough innovations? This short exploratory paper is an introduction to a larger empirical study aiming to answer these questions….(More).”

Surveying the citizen science landscape

Curated on February 4, 2015August 3, 2018 by Stefaan Verhulst

Paper by Andrea Wiggins and Kevin Crowston in First Monday: “Citizen science has seen enormous growth in recent years, in part due to the influence of the Internet, and a corresponding growth in interest. However, the few stand-out examples that have received attention from media and researchers are not representative of the diversity of the field as a whole, and therefore may not be the best models for those seeking to study or start a citizen science project. In this work, we present the results of a survey of citizen science project leaders, identifying sub-groups of project types according to a variety of features related to project design and management, including funding sources, goals, participant activities, data quality processes, and social interaction. These combined features highlight the diversity of citizen science, providing an overview of the breadth of the phenomenon and laying a foundation for comparison between citizen science projects and to other online communities….(More).”

U.S. Public Participation Playbook

Curated on February 4, 2015August 3, 2018 by Stefaan Verhulst

“The U.S. Public Participation Playbook is a resource for government managers to effectively evaluate and build better services through public participation using best practices and performance metrics.
Public participation—where citizens help shape and implement government programs—is a foundation of open, transparent, and engaging government services. From emergency management, town hall discussions and regulatory development to science and education, better engagement with those who use public services can measurably improve those services for everyone.
Developing a U.S. Public Participation Playbook is an open government priority included in both the first and second U.S. Open Government National Action Plans as part of the United States effort to increase public integrity in government programs. This resource reflects the commitment of the government and civic partners to measurably improve participation programs, and is designed using the same inclusive principles that it champions.

How is the playbook structured?

We needed to create a resource that combines best practices and suggested performance metrics for public servants to use to evaluate and build better services — to meet this need, based on discussions with federal managers and stakeholders, we identified five main categories that should be addressed in all programs, whether digital or offline. Within each category we identified 12 unifying plays to start with, each including a checklist to consider, resources and training. We then provide suggested performance metrics for each main category.
This is only the beginning, however, and we hope the plays will quickly expand and enrich. The U.S. Public Participation Playbook was not just designed for a more open government — it was designed collaboratively through a more open government…(More)”

Government for a New Age: Managing Public Services in the 21st Century

Curated on February 2, 2015May 29, 2019 by Stefaan Verhulst

A new Thinkers50 book by by Michel Khoury and Rabih Abouchakra: “What is the role of government in the modern world? The environment that governments operate in today is hugely complex. Governments face difficult challenges on all sides. Global upheavals and geopolitical shifts, climate change, rapidly evolving technologies and socio-economic demographics, resource constraints, an increasingly diverse constituency and citizens more demanding expectations — these are just some of the forces driving societal changes and transforming the context in which governments operate. Around the world governments are responding to these challenges by shifting the way they think, steer, organize, measure and engage with citizens, and the private and third sector. Until now, though, best practice has remained elusive. Intergovernmental collaboration and sharing of innovative policy making is piecemeal. Government for a New Age brings together the latest thinking on modern government. It sheds light on the current trends in governance practices, operating models, processes and tools that leading governments are embracing. Government for a New Age explores the ways in which governments are changing their value proposition to tackle these pressing concerns and provide some answers to these questions…(More).”

Cultures of Code

Curated on February 2, 2015August 3, 2018 by Stefaan Verhulst

Brian Hayes in the American Scientist: “Kim studies parallel algorithms, designed for computers with thousands of processors. Chris builds computer simulations of fluids in motion, such as ocean currents. Dana creates software for visualizing geographic data. These three people have much in common. Computing is an essential part of their professional lives; they all spend time writing, testing, and debugging computer programs. They probably rely on many of the same tools, such as software for editing program text. If you were to look over their shoulders as they worked on their code, you might not be able to tell who was who.
Despite the similarities, however, Kim, Chris, and Dana were trained in different disciplines, and they belong to different intellectual traditions and communities. Kim, the parallel algorithms specialist, is a professor in a university department of computer science. Chris, the fluids modeler, also lives in the academic world, but she is a physicist by training; sometimes she describes herself as a computational scientist (which is not the same thing as a computer scientist). Dana has been programming since junior high school but didn’t study computing in college; at the startup company where he works, his title is software developer.
These factional divisions run deeper than mere specializations. Kim, Chris, and Dana belong to different professional societies, go to different conferences, read different publications; their paths seldom cross. They represent different cultures. The resulting Balkanization of computing seems unwise and unhealthy, a recipe for reinventing wheels and making the same mistake three times over. Calls for unification go back at least 45 years, but the estrangement continues. As a student and admirer of all three fields, I find the standoff deeply frustrating.
Certain areas of computation are going through a period of extraordinary vigor and innovation. Machine learning, data analysis, and programming for the web have all made huge strides. Problems that stumped earlier generations, such as image recognition, finally seem to be yielding to new efforts. The successes have drawn more young people into the field; suddenly, everyone is “learning to code.” I am cheered by (and I cheer for) all these events, but I also want to whisper a question: Will the wave of excitement ever reach other corners of the computing universe?…
What’s the difference between computer science, computational science, and software development?…(More)”

The Royal Statistical Society Data Manifesto

Curated on February 2, 2015August 3, 2018 by Stefaan Verhulst

ePSiplatform: “A Data Manifesto released by the Royal Statistical Society describes ten recommendations that focus on how the next UK government can improve data for policymaking, democracy and for prosperity…..the Society calls for official statistics to be at the heart of policy debate and recommends that the Office for National Statistics and the wider Government Statistical Service be given adequate resources, as well as calling for greater investment in research, science and innovation.

The document shows that the Society is broadly supportive of the open data agenda; in particular the opening up of government data and giving citizens greater access to quality local data.
It calls for greater data sharing between government departments for statistics and research purposes and believes the private sector should be encouraged to share data with researchers for the same purpose. It also calls for an end to pre-release access to official statistics….Download the Data Manifesto in PDF format.”

Have a smartphone? This start-up will turn you into a lobbyist.

Curated on February 2, 2015August 3, 2018 by Stefaan Verhulst

J.D. Harrison in the Washington Post: “…We needed a solution; some way to turn that passion into action right there in the moment.”
So she built one – but not on her own. In late 2012, Hartsock lured two entrepreneurs, Jeb Ory and Patrick Stoddart, away from tech start-ups they were already running to launch a new venture called Phone2Action. The company now provides an online and mobile platform that helps private companies, nonprofits and trade associations connect their customers and supporters with local and federal policymakers.
In short, the company’s clients – which include the Consumer Electronics Association, the American Heart Association, Ford and ridesharing company Lyft – pay a subscription for access to Phone2Action’s software tools, which allows them to build digital campaign pages featuring stories or information that illustrate the importance of, say, patent reform legislation (for CEA) or eased transportation regulations (for Lyft). On the side of the page, visitors can input their name, Zip code and e-mail address, and the site will automatically populate an e-mail, tweet and Facebook post (authored by, in this case, CEA or Lyft) expressing support and urging policymakers to vote in favor of the cause or legislation.
One more click, and those messages are automatically sent to the inboxes and social media feeds of the proper elected officials, based on the individual’s Zip code.
The idea, Ory said, is two-fold: One, to give individuals an easier way to connect with elected officials, and two, to give Phone2Action’s clients a more effective way to harness the lobbying power of their supporters. What made that possible, he explained, was really the proliferation of smartphones….While Phone2Action’s campaign model has proven viable, several hurdles still stand in the company’s way – not the least of which is the sense of powerlessness felt by many Americans when it comes to public policy and today’s legislative process…(More).”

The Precision Medicine Initiative: Data-Driven Treatments as Unique as Your Own Body

Curated on February 1, 2015August 3, 2018 by Stefaan Verhulst

White House Press Release: “…the Precision Medicine Initiative will pioneer a new model of patient-powered research that promises to accelerate biomedical discoveries and provide clinicians with new tools, knowledge, and therapies to select which treatments will work best for which patients.

Most medical treatments have been designed for the “average patient.” As a result of this “one-size-fits-all-approach,” treatments can be very successful for some patients but not for others. This is changing with the emergence of precision medicine, an innovative approach to disease prevention and treatment that takes into account individual differences in people’s genes, environments, and lifestyles. Precision medicine gives clinicians tools to better understand the complex mechanisms underlying a patient’s health, disease, or condition, and to better predict which treatments will be most effective….

Objectives of the Precision Medicine Initiative:

More and better treatments for cancer: NCI will accelerate the design and testing of effective, tailored treatments for cancer by expanding genetically based clinical cancer trials, exploring fundamental aspects of cancer biology, and establishing a national “cancer knowledge network” that will generate and share new knowledge to fuel scientific discovery and guide treatment decisions.
Creation of a voluntary national research cohort: NIH, in collaboration with other agencies and stakeholders, will launch a national, patient-powered research cohort of one million or more Americans who volunteer to participate in research. Participants will be involved in the design of the Initiative and will have the opportunity to contribute diverse sources of data—including medical records; profiles of the patient’s genes, metabolites (chemical makeup), and microorganisms in and on the body; environmental and lifestyle data; patient-generated information; and personal device and sensor data. Privacy will be rigorously protected. This ambitious project will leverage existing research and clinical networks and build on innovative research models that enable patients to be active participants and partners. The cohort will be broadly accessible to qualified researchers and will have the potential to inspire scientists from multiple disciplines to join the effort and apply their creative thinking to generate new insights. The ONC will develop interoperability standards and requirements to ensure secure data exchange with patients’ consent, to empower patients and clinicians and advance individual, community, and population health.
Commitment to protecting privacy: To ensure from the start that this Initiative adheres to rigorous privacy protections, the White House will launch a multi-stakeholder process with HHS and other Federal agencies to solicit input from patient groups, bioethicists, privacy, and civil liberties advocates, technologists, and other experts in order to identify and address any legal and technical issues related to the privacy and security of data in the context of precision medicine.
Regulatory modernization: The Initiative will include reviewing the current regulatory landscape to determine whether changes are needed to support the development of this new research and care model, including its critical privacy and participant protection framework. As part of this effort, the FDA will develop a new approach for evaluating Next Generation Sequencing technologies — tests that rapidly sequence large segments of a person’s DNA, or even their entire genome. The new approach will facilitate the generation of knowledge about which genetic changes are important to patient care and foster innovation in genetic sequencing technology, while ensuring that the tests are accurate and reliable.
Public-private partnerships: The Obama Administration will forge strong partnerships with existing research cohorts, patient groups, and the private sector to develop the infrastructure that will be needed to expand cancer genomics, and to launch a voluntary million-person cohort. The Administration will call on academic medical centers, researchers, foundations, privacy experts, medical ethicists, and medical product innovators to lay the foundation for this effort, including developing new approaches to patient participation and empowerment. The Administration will carefully consider and develop an approach to precision medicine, including appropriate regulatory frameworks, that ensures consumers have access to their own health data – and to the applications and services that can safely and accurately analyze it – so that in addition to treating disease, we can empower individuals and families to invest in and manage their health.”

(More).