The Promise and Perils of Open Medical Data

Curated on Posted on by Stefaan Verhulst
Sharona Hoffman at the Hastings Center: “Not long ago I visited the Personal Genome Project’s website. The PGP describes its mission as “creating public genome, health, and trait data.” In the “Participant Profiles” section, I found several entries that disclosed the names of individuals along with their date of birth, sex, weight, height, blood type, race, health conditions, medications, allergies, medical procedures, and more. Other profiles did not feature names but provided all of the other details. I had no special access to this information. It is available to absolutely anyone with Internet access. The PGP is part of a trend known as “open data.” Many government and private entities have launched initiatives to compile very large data resources (also known as “big data”) and to make them available to the public. President Obama himself has endorsed open data by issuing a May 2013 executive order directing that, to the extent permitted by law, the federal government must release its data to the public in forms that make it easy to locate, access, and use.

Read more:http://www.thehastingscenter.org/Publications/HCR/Detail.aspx?id=7731#ixzz3zOSM2kF0

Moving from Open Data to Open Knowledge: Announcing the Commerce Data Usability Project

Curated on Posted on by Stefaan Verhulst

Jeffrey Chen, Tyrone Grandison, and Kristen Honey at the US Department of Commerce: “…in 2016, the DOC is committed to building on this momentum with new and expanded efforts to transform open data into knowledge into action.

DOC Open Data Graphic
Graphic Credit: Radhika Bhatt, Commerce Data Service

DOC has been in the business of open data for a long time. DOC’s National Oceanic and Atmospheric Administration (NOAA) alone collects and disseminates huge amounts of data that fuel the global weather economy—and this information represents just a fraction of the tens of thousands of datasets that DOC collects and manages, on topics ranging from satellite imagery to material standards to demographic surveys.

Unfortunately, far too many DOC datasets are either hard to find, difficult to use, and/or not yet publicly available on Data.gov, the home of U.S. government’s open data. This challenge is not exclusive to DOC; and indeed, under Project Open Data, Federal agencies are working hard on various efforts to make tax-payer funded data more easily discoverable.

CDUP screenshot

One of these efforts is DOC’s Commerce Data Usability Project (CDUP). To unlock the power of data, just making data open isn’t enough. It’s critical to make data easier to find and use—to provide information and tools that make data accessible and actionable for all users. That’s why DOC formed a public-private partnership to create CDUP, a collection of online data tutorials that provide students, developers, and entrepreneurs with the necessary context and code for them to start quickly extracting value from various datasets. Tutorials exist on topics such as:

  • NOAA’s Severe Weather Data Inventory (SWDI), demonstrating how to use hail data to save life and property. The tutorial helps users see that hail events often occur in the summer (late night to early morning), and in midwestern and southern states.
  • Security vulnerability data from the National Institute of Standards and Technology (NIST). The tutorial helps users see that spikes and dips in security incidents consistently occur in the same set of weeks each year.
  • Visible Infrared Imaging Radiometer Suite (VIIRS) data from the National Oceanic and Atmospheric Administration (NOAA). The tutorial helps users understand how to use satellite imagery to estimate populations.
  • American Community Survey (ACS) data from the U.S. Census Bureau. The tutorial helps users understand how nonprofits can identify communities that they want to serve based on demographic traits.

In the coming months, CDUP will continue to expand with a rich, diverse set of additional tutorials….(More)“

Designing a toolkit for policy makers

Curated on Posted on by Stefaan Verhulst

 at UK’s Open Policy Making Blog: “At the end of the last parliament, the Cabinet Office Open Policy Making team launched the Open Policy Making toolkit. This was about giving policy makers the actual tools that will enable them to develop policy that is well informed, creative, tested, and works. The starting point was addressing their needs and giving them what they had told us they needed to develop policy in an ever changing, fast paced and digital world. In a way, it was the culmination of the open policy journey we have been on with departments for the past 2 years. In the first couple of months we saw thousands of unique visits….

Our first version toolkit has been used by 20,000 policy makers. This gave us a huge audience to talk to to make sure that we continue to meet the needs of policy makers and keep the toolkit relevant and useful. Although people have really enjoyed using the toolkit, user testing quickly showed us a few problems…

We knew what we needed to do. Help people understand what Open Policy Making was, how it impacted their policy making, and then to make it as simple as possible for them to know exactly what to do next.

So we came up with some quick ideas on pen and paper and tested them with people. We quickly discovered what not to do. People didn’t want a philosophy— they wanted to know exactly what to do, practical answers, and when to do it. They wanted a sort of design manual for policy….

How do we make user-centered design and open policy making as understood as agile?

We decided to organise the tools around the journey of a policy maker. What might a policy maker need to understand their users? How could they co-design ideas? How could they test policy? We looked at what tools and techniques they could use at the beginning, middle and end of a project, and organised tools accordingly.

We also added sections to remove confusion and hesitation. Our opening section ‘Getting started with Open Policy Making’ provides people with a clear understanding of what open policy making might mean to them, but also some practical considerations. Sections for limited timeframes and budgets help people realise that open policy can be done in almost any situation.

And finally we’ve created a much cleaner and simpler design that lets people show as much or little of the information as they need….

So go and check out the new toolkit and make more open policy yourselves….(More)”

Innovating and changing the policy-cycle: Policy-makers be prepared!

Curated on Posted on by Stefaan Verhulst

Marijn Janssen and Natalie Helbig in Government Information Quarterly: “Many policy-makers are struggling to understand participatory governance in the midst of technological changes. Advances in information and communication technologies (ICTs) continue to have an impact on the ways that policy-makers and citizens engage with each other throughout the policy-making process. A set of developments in the areas of opening government data, advanced analytics, visualization, simulation, and gaming, and ubiquitous citizen access using mobile and personalized applications is shaping the interactions between policy-makers and citizens. Yet the impact of these developments on the policy-makers is unclear. The changing roles and need for new capabilities required from the government are analyzed in this paper using two case studies. Salient new roles for policy-makers are outlined focused on orchestrating the policy-making process. Research directions are identified including understand the behavior of users, aggregating and analyzing content from scattered resources, and the effective use of the new tools. Understanding new policy-makers roles will help to bridge the gap between the potential of tools and technologies and the organizational realities and political contexts. We argue that many examples are available that enable learning from others, in both directions, developed countries experiences are useful for developing countries and experiences from the latter are valuable for the former countries…(More)”

The Open (Data) Market

Curated on Posted on by Stefaan Verhulst

Sean McDonald at Medium: “Open licensing privatizes technology and data usability. How does that effect equality and accessibility?…The open licensing movement(open data, open source software, etc.) predicates its value on increasing accessibility and transparency by removing legal and ownership restrictions on use. The groups that advocate for open data and open sourcecode, especially in government and publicly subsidized industries, often come from transparency, accountability, and freedom of information backgrounds. These efforts, however, significantly underestimate the costs of refining, maintaining, targeting, defining a value proposition, marketing, and presenting both data and products in ways that are effective and useful for the average person. Recent research suggests the primary beneficiaries of civic technologies — those specifically built on government data or services — are privileged populations. The World Banks recent World Development Report goes further to point out that public digitization can be a driver of inequality.

The dynamic of self-replicating privilege in both technology and openmarkets is not a new phenomenon. Social science research refers to it as the Matthew Effect, which says that in open or unregulated spaces, theprivileged tend to become more privileged, while the poor become poorer.While there’s no question the advent of technology brings massive potential,it is already creating significant access and achievement divides. Accordingto the Federal Communication Commission’s annual Broadband Progressreport in 2015, 42% of students in the U.S. struggle to do their homeworkbecause of web access — and 39% of rural communities don’t even have abroadband option. Internet access skews toward urban, wealthycommunities, with income, geography, and demographics all playing a rolein adoption. Even further, research suggests that the rich and poor use technology differently. This runs counter to narrative of Interneteventualism, which insist that it’s simply a (small) matter of time beforethese access (and skills) gaps close. Evidence suggests that for upper andmiddle income groups access is almost universal, but the gaps for lowincome groups are growing…(More)”

Open Data Is Changing the World in Four Ways…

Curated on Posted on by Stefaan Verhulst

 at The GovLab Blog: “New repository of case studies documents the impact of open data globally: odimpact.org.

odimpact-tweet-3

Despite global commitments to and increasing enthusiasm for open data, little is actually known about its use and impact. What kinds of social and economic transformation has open data brought about, and what is its future potential? How—and under what circumstances—has it been most effective? How have open data practitioners mitigated risks and maximized social good?

Even as proponents of open data extol its virtues, the field continues to suffer from a paucity of empiricalevidence. This limits our understanding of open data and its impact.

Over the last few months, The GovLab (@thegovlab), in collaboration with Omidyar Network(@OmidyarNetwork), has worked to address these shortcomings by developing 19 detailed open data case studies from around the world. The case studies have been selected for their sectoral and geographic representativeness. They are built in part from secondary sources (“desk research”), and also from more than60 first-hand interviews with important players and key stakeholders. In a related collaboration withOmidyar Network, Becky Hogge(@barefoot_techie), an independent researcher, has developed an additional six open data case studies, all focused on the United Kingdom.  Together, these case studies, seek to provide a more nuanced understanding of the various processes and factors underlying the demand, supply, release, use and impact of open data.

Today, after receiving and integrating comments from dozens of peer reviewers through a unique open process, we are delighted to share an initial batch of 10 case studies, as well three of Hogge’s UK-based stories. These are being made available at a new custom-built repository, Open Data’s Impact (http://odimpact.org), that will eventually house all the case studies, key findings across the studies, and additional resources related to the impact of open data. All this information will be stored in machine-readable HTML and PDF format, and will be searchable by area of impact, sector and region….(More)

Iowa fights snow with data

Curated on Posted on by Stefaan Verhulst

Patrick Marshall at GCN: “Most residents of the Mid-Atlantic states, now digging out from the recent record-setting snowstorm, probably don’t know how soon their streets will be clear.  If they lived in Iowa, however, they could simply go to the state’s Track a Plow website to see in near real time where snow plows are and in what direction they’re heading.

In fact, the Track a Plow site — the first iteration of which launched three years ago — shows much more than just the location and direction of the state’s more than 900 plows. Because they are equipped with geolocation equipment and a variety of sensors,  the plows also provide information on road conditions, road closures and whether trucks are applying liquid or solid materials to counter snow and ice.  That data is regularly uploaded to Track a Plow, which also offers near-real-time video and photos of conditions.

Track a Plow screenshot

According to Eric Abrams, geospatial manager at the Iowa Department of Transportation, the service is very popular and is being used for a variety of purposes.  “It’s been one of the greatest public interface things that DOT has ever done,” he said.  In addition to citizens considering travel, Abrams said the, site’s heavy users include news stations, freight companies routing vehicles and school districts determining whether to delay opening or cancel classes.

How it works

While Track a Plow launched with just location information, it has been frequently enhanced over the past two years, beginning with the installation of video cameras.  “The challenge was to find a cost-effective way to put cams in the plows and then get those images not just to supervisors but to the public,” Abrams said.  The solution he arrived at was dashboard-mounted iPhones that transmit time and location data in addition to images.  These were especially cost-effective because they were free with the department’s Verizon data plan. “Our IT division built a custom iPhone app that is configurable for how often it sends pictures back to headquarters here, where we process them and get them out to the feed,” he explained….(More)”

Opening Governance – Change, Continuity and Conceptual Ambiguity

Curated on Posted on by Stefaan Verhulst
Introduction to special issue of IDS Bulletin by Rosemary McGee and Duncan Edwards: “Open government and open data are new areas of research, advocacy and activism that have entered the governance field alongside the more established areas of transparency and accountability. This article reviews recent scholarship in these areas, pinpointing contributions to more open, transparent, accountable and responsive governance via improved practice, projects and programmes. The authors set the rest of the articles from this IDS Bulletin in the context of the ideas, relationships, processes, behaviours, policy frameworks and aid funding practices of the last five years, and critically discuss questions and weaknesses that limit the effectiveness and impact of this work. Identifying conceptual ambiguity as a key problem, they offer a series of definitions to help overcome the technical and political difficulties this causes. They also identify hype and euphemism, and offer a series of conclusions to help restore meaning and ideological content to work on open government and open data in transparent and accountable governance….(More)”

When is your problem a ‘Challenge’?

Curated on Posted on by Stefaan Verhulst

Ed Parkes at NESTA: “More NGOs, Government Departments and city governments are using challenge prizes to help develop new products and services which ‘solve’ a problem they have identified. There have been several high profile prizes (for instance, Nesta’s Longitude Prize or the recently announced $7 million ocean floor Xprize) and a growing number of platforms for running them (such as Challenge.gov or OpenIdeo). Due to this increased profile, challenge prizes are more often seen by public sector strategists and policy owners as holding the potential to solve their tricky strategic issues.

To characterise, the starting point is often “If only we could somehow get new, smart, digitally-informed organisations to solve the underfunded, awkward strategic issues we’ve been grappling with, wouldn’t it be great?”.

This approach is especially tantalising for public sector organisations as it means they can be seen to take action on an issue through ‘market shaping’, rather than resorting to developing policy or intervening with regulation or legislation.

Having worked on a series of challenge prizes on open data over the last couple of years, as well as subsequently working with organisations on how our design principles could be applied to their objectives, I’ve spent some time thinking about when it’s appropriate to run a challenge prize. The design and practicalities of running a successful challenge prize are not always straightforward. Thankfully there has already been some useful broad guidance on this from Nesta’s Centre for Challenge Prizes in their Challenge Prize Practice Guide and McKinsey and Deloitte have also published guides.

Nevertheless despite this high quality guidance, like many things in life, the most difficult part is knowing where to start. Organisations struggle to understand whether they have the right problem in the first place. In many instances running a challenge prize is not the appropriate organisational response to an issue and it’s best to discover this early on. From my experience, there are two key questions which are worth asking when you’re trying to work out if your problem is suitable:

1. Is your problem an issue for anyone other than your own organisation?…

2. Will other people see solving this problem as an investment opportunity or worth funding?…

These two considerations come down to one thing – incentive. Firstly, does anyone other than your organisation care about this issue and secondly, do they care enough about it to pay to solve it…..(More)’

Met Office warns of big data floods on the horizon

Curated on Posted on by Stefaan Verhulst

 at V3: “The amount of data being collected by departments and agencies mean government services will not be able to implement truly open data strategies, according to Met Office CIO Charles Ewen.

Ewen said the rapidly increasing amount of data being stored by companies and government departments mean it will not be technologically possible able to share all their data in the near future.

During a talk at the Cloud World Forum on Wednesday, he said: “The future will be bigger and bigger data. Right now we’re talking about petabytes, in the near future it will be tens of petabytes, then soon after it’ll be hundreds of petabytes and then we’ll be off into imaginary figure titles.

“We see a future where data has gotten so big the notion of open data and the idea ‘lets share our data with everybody and anybody’ just won’t work. We’re struggling to make it work already and by 2020 the national infrastructure will not exist to shift this stuff [data] around in the way anybody could access and make use of it.”

Ewen added that to deal with the shift he expects many departments and agencies will adapt their processes to become digital curators that are more selective about the data they share, to try and ensure it is useful.

“This isn’t us wrapping our arms around our data and saying you can’t see it. We just don’t see how we can share all this big data in the way you would want it,” he said.

“We see a future where a select number of high-capacity nodes become information brokers and are used to curate and manage data. These curators will be where people bring their problems. That’s the future we see.”

Ewan added that the current expectations around open data are based on misguided views about the capabilities of cloud technology to host and provide access to huge amounts of data.

“The trendy stuff out there claims to be great at everything, but don’t get carried away. We don’t see cloud as anything but capability. We’ve been using appropriate IT and what’s available to deliver our mission services for over 50 to 60 years, and cloud is playing an increasing part of that, but purely for increased capability,” he said.

“It’s just another tool. The important thing is having the skill and knowledge to not just believe vendors but to look and identify the problem and say ‘we have to solve this’.”

The Met Office CIO’s comments follow reports from other government service providers that people’s desire for open data is growing exponentially….(More)”