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
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).
Digital Enlightenment Yearbook 2014
Book edited O’Hara, K. , Nguyen, M-H.C., Haynes, P.: “Tracking the evolution of digital technology is no easy task; changes happen so fast that keeping pace presents quite a challenge. This is, nevertheless, the aim of the Digital Enlightenment Yearbook.
This book is the third in the series which began in 2012 under the auspices of the Digital Enlightenment Forum. This year, the focus is on the relationship of individuals with their networks, and explores “Social networks and social machines, surveillance and empowerment”. In what is now the well-established tradition of the yearbook, different stakeholders in society and various disciplinary communities (technology, law, philosophy, sociology, economics, policymaking) bring their very different opinions and perspectives to bear on this topic.
The book is divided into four parts: the individual as data manager; the individual, society and the market; big data and open data; and new approaches. These are bookended by a Prologue and an Epilogue, which provide illuminating perspectives on the discussions in between. The division of the book is not definitive; it suggests one narrative, but others are clearly possible.
The 2014 Digital Enlightenment Yearbook gathers together the science, social science, law and politics of the digital environment in order to help us reformulate and address the timely and pressing questions which this new environment raises. We are all of us affected by digital technology, and the subjects covered here are consequently of importance to us all. (Contents)”
Access to Scientific Data in the 21st Century: Rationale and Illustrative Usage Rights Review
Paper by James Campbell in Data Science Journal: “Making scientific data openly accessible and available for re-use is desirable to encourage validation of research results and/or economic development. Understanding what users may, or may not, do with data in online data repositories is key to maximizing the benefits of scientific data re-use. Many online repositories that allow access to scientific data indicate that data is “open,” yet specific usage conditions reviewed on 40 “open” sites suggest that there is no agreed upon understanding of what “open” means with respect to data. This inconsistency can be an impediment to data re-use by researchers and the public. (More)”
Open Government: Origin, Development, and Conceptual Perspectives
Paper by Bernd W. Wirtz & Steven Birkmeyer in the International Journal of Public Administration: “The term “open government” is frequently used in practice and science. Since President Obama’s Memorandum for the Heads of Executive Departments and Agencies in March 2009, open government has attracted an enormous amount of public attention. It is applied by authors from diverse areas, leading to a very heterogeneous comprehension of the concept. Against this background, this article screens the current open government literature to deduce an integrative definition of open government. Furthermore, this article analyzes the empirical and conceptual literature of open government to deduce an open government framework. In general, this article provides a clear understanding of the open government concept. (More)”
Millions of LinkedIn Members Want to Volunteer Their Skills for Good [INFOGRAPHIC]
LinkedIn: “What do 140,000 marketers, 4,000 Googlers, and 170,000 C-level executives have in common?
Answer: They all want to use their skills for good!
More than 4 million professionals like them have expressed interest in joining a nonprofit board or doing skills-based volunteering – or both.
GreatNonprofits, an organization that helps people find and rate other nonprofits, recently found two of these professionals on LinkedIn. Both are product managers who are spending 6 months to develop critical web-based tools to help the organization expand its reach.
“Both volunteers are creative, analytical, and really engaging deeply with staff,” says GreatNonprofits Founder and CEO Perla Ni. “We’re encouraged by how many talented, passionate people there are on LinkedIn who are willing to commit time to help nonprofits.”
As a professional, you can signal you want to use your skills for good on your LinkedIn profile by checking the boxes for “Joining a nonprofit board” and/or “Skills-based volunteering” in the Volunteer Experience & Causes section. If you’ve already done that, try searching for volunteer opportunities in your area.
For nonprofit organizations, we’ve made it quick and easy to find professionals who are eager to help. Use our free Advanced Search tool to find these talented needles in the haystack.
We took a closer look at the millions of LinkedIn members who’ve raised their hands for volunteer or board service, and found some interesting insights. For starters, the stereotype that millennials are hungry for purpose actually rings true. Also, the highest concentration of would-be volunteers are in the Midwest. And they have a ton of valuable skills – from strategic planning to marketing – for nonprofits to leverage.
Check out the infographic below for more, or visit nonprofit.linkedin.com.”
Moneyball for Government
New book edited by Peter Orszag and Jim Nussle: “A bipartisan group of current and former federal government leaders and advisors have written a new book, titled Moneyball for Government, which encourages government to change how it works so that data, evidence and evaluation drive policy and funding decisions.
The book includes jointly-written chapters by former Obama and George W. Bush administration Budget Directors Peter Orszag and Jim Nussle, U.S. Senators Kelly Ayotte (R-NH) and Mark Warner (D-VA), former Obama and George W. Bush domestic policy advisors Melody Barnes and John Bridgeland; and former spokesmen for the Mitt Romney and Hillary Clinton presidential campaigns Kevin Madden and Howard Wolfson. It also includes chapters from former Obama and George W. Bush economic advisors Gene Sperling and Glenn Hubbard, and Obama and George W. Bush policy experts Robert Gordon and Ron Haskins.
The book also features profiles of innovative government and nonprofit leaders and organizations across the country that are successfully leveraging data, evidence and evaluation to get better results.
This book is about changing the way government works. By shifting public resources toward solutions that are informed by the best possible data, evidence and evaluation about what works, our government can improve the lives of young people, their families and communities. By brining together leading thinkers from across the political spectrum and highlighting the good work underway across the country, this book makes the case for Moneyball for Government and shows that it’s possible.”
With a Few Bits of Data, Researchers Identify ‘Anonymous’ People
Natasha Singer in the New York Times: “Even when real names and other personal information are stripped from big data sets, it is often possible to use just a few pieces of the information to identify a specific person, according to a study to be published Friday in the journal Science.
In the study, titled “Unique in the Shopping Mall: On the Reidentifiability of Credit Card Metadata,” a group of data scientists analyzed credit card transactions made by 1.1 million people in 10,000 stores over a three-month period. The data set contained details including the date of each transaction, amount charged and name of the store.
Although the information had been “anonymized” by removing personal details like names and account numbers, the uniqueness of people’s behavior made it easy to single them out.
In fact, knowing just four random pieces of information was enough to reidentify 90 percent of the shoppers as unique individuals and to uncover their records, researchers calculated. And that uniqueness of behavior — or “unicity,” as the researchers termed it — combined with publicly available information, like Instagram or Twitter posts, could make it possible to reidentify people’s records by name.
“The message is that we ought to rethink and reformulate the way we think about data protection,” said Yves-Alexandre de Montjoye, a graduate student in computational privacy at the M.I.T. Media Lab who was the lead author of the study. “The old model of anonymity doesn’t seem to be the right model when we are talking about large-scale metadata.”
The analysis of large data sets containing details on people’s behavior holds great potential to improve public health, city planning and education.
But the study calls into question the standard methods many companies, hospitals and government agencies currently use to anonymize their records. It may also give ammunition to some technologists and privacy advocates who have challenged the consumer-tracking processes used by advertising software and analytics companies to tailor ads to so-called anonymous users online….(More).”
How Network Science Is Changing Our Understanding of Law
Emerging Technology From the arXiv: “One of the more fascinating areas of science that has emerged in recent years is the study of networks and their application to everyday life. It turns out that many important properties of our world are governed by networks with very specific properties.
These networks are not random by any means. Instead, they are often connected in the now famous small world pattern in which any part of the network can be reached in a relatively small number of steps. These kinds of networks lie behind many natural phenomena such as earthquakes, epidemics and forest fires and are equally ubiquitous in social phenomena such as the spread of fashions, languages, and even wars.
So it should come as no surprise that the same kind of network should exist in the legal world. Today, Marios Koniaris and pals at the National Technical University of Athens in Greece show that the network of links between laws follows exactly the same pattern. They say their network approach provides a unique insight into the nature of the law, the way it has emerged and how changes may influence it in the future.
The work of Koniaris and co focuses entirely on the law associated with the European Union. They begin by pointing out that this legal network is different from many other types of networks in two important ways….
The network can also be using for visualizing the nature of the legal world. It reveals clusters and related connections and can help legislators determine the effect of proposed changes…..It also shows how network science is spreading to every corner of scientific and social research.
Ref: arxiv.org/abs/1501.05237 : Network Analysis In The Legal Domain: A Complex Model For European Union Legal Sources”
The new scientific revolution: Reproducibility at last
in the Washington Post:”…Reproducibility is a core scientific principle. A result that can’t be reproduced is not necessarily erroneous: Perhaps there were simply variables in the experiment that no one detected or accounted for. Still, science sets high standards for itself, and if experimental results can’t be reproduced, it’s hard to know what to make of them.
“The whole point of science, the way we know something, is not that I trust Isaac Newton because I think he was a great guy. The whole point is that I can do it myself,” said Brian Nosek, the founder of a start-up in Charlottesville, Va., called the Center for Open Science. “Show me the data, show me the process, show me the method, and then if I want to, I can reproduce it.”
The reproducibility issue is closely associated with a Greek researcher, John Ioannidis, who published a paper in 2005 with the startling title “Why Most Published Research Findings Are False.”
Ioannidis, now at Stanford, has started a program to help researchers improve the reliability of their experiments. He said the surge of interest in reproducibility was in part a reflection of the explosive growth of science around the world. The Internet is a factor, too: It’s easier for researchers to see what everyone else is doing….
Errors can potentially emerge from a practice called “data dredging”: When an initial hypothesis doesn’t pan out, the researcher will scan the data for something that looks like a story. The researcher will see a bump in the data and think it’s significant, but the next researcher to come along won’t see it — because the bump was a statistical fluke….
So far about 7,000 people are using that service, and the center has received commitments for $14 million in grants, with partners that include the National Science Foundation and the National Institutes of Health, Nosek said.
Another COS initiative will help researchers register their experiments in advance, telling the world exactly what they plan to do, what questions they will ask. This would avoid the data-dredging maneuver in which researchers who are disappointed go on a deep dive for something publishable.
Nosek and other reformers talk about “publication bias.” Positive results get reported, negative results ignored. Someone reading a journal article may never know about all the similar experiments that came to naught….(More).”