“In Innovative State, America’s first Chief Technology Officer Aneesh Chopra tells the story of a new revolution in America. Over the course of our history, America has had a pioneering government matched to the challenges of the day. But over the past twenty years, as our economy and our society have been completely changed by technology, and the private sector has innovated, government has stalled, trapped in models that were designed for the America of the past. Aneesh Chopra, tasked with leading the charge for a more open, tech-savvy government, here shows how we can reshape our government and tackle our most vexing problems, from economic development to affordable healthcare. Drawing on interviews with leaders and building on his firsthand experience, Chopra’s Innovative State is a fascinating look at how to be smart, do more with less, and reshape American government for the twenty-first century.”
Website: http://www.innovativestate.com/
The "Accessibility Map"
Webby 2014 Nominee: “Project Goal is to make information about accessible venues accessible to people.
About venues where people with disabilities can engage in sports and recreational activities, and live full lives without any barriers or stereotypes.
The Solution
To develop a website where everyone can not only find accessible venues in each city, but also add new venues to the website’s database.
Creating the accessibility rating list for russian cities to get an idea how accessible a particular city is, will draw the local governement’ s attention to this problem.
The foundation of the website is an interactive map of accessible venues in Russia, which can help people with disabilities find locations where they can participate in sports, take classes or recreate.
All you need to do is choose the necessary city and street, and the map will show all the accessible venues in the city.
The Result
After a few months of operation:
— over 14 000 venues
— over 600 cities
— millions of people with disabilities have become able to live full lives
Project’s Website: kartadostupnosti.ru“
Sharing in a Changing Climate
Helen Goulden in the Huffington Post: “Every month, a social research agency conducts a public opinion survey on 30,000 UK households. As part of this households are asked about what issues they think are the most important; things such as crime, unemployment, inequality, public health etc. Climate change has ranked so consistently low on these surveys that they don’t both asking any more.
On first glance, it would appear that most people don’t care about a changing climate.
Yet, that’s simply not true. Many people care deeply, but fleetingly – in the same way they may consider their own mortality before getting back to thinking about what to have for tea. And others care, but fail to change their behaviour in a way that’s proportionate to their concerns. Certainly that’s my unhappy stomping ground.
Besides what choices do we really have? Even the most progressive, large organisations have been glacial to move towards any form of real form of sustainability. For many years we have struggled with the Frankenstein-like task of stitching ‘sustainability’ onto existing business and economic models and the results, I think, speak for themselves.
That the Collaborative Economy presents us with an opportunity – in Napster-like ways – to disrupt and evolve toward something more sustainable is compelling idea. Looking out to a future filled with opportunities to reconfigure how we produce, consume and dispose of the things we want and need to live, work and play.
Whether the journey toward sustainability is short or long, it will be punctuated with a good degree of turbulence, disruption and some largely unpredictable events. How we deal with those events and what role communities, collaboration and technology play may set the framework and tone for how that future evolves. Crises and disruption to our entrenched living patterns present ripe opportunities for innovation and space for adopting new behaviours and practices.
No-one is immune from the impact of erratic and extreme weather events. And if we accept that these events are going to increase in frequency, we must draw the conclusion that emergency state and government resources may be drawn more thinly over time.
Across the world, there is a fairly well organised state and international infrastructure for dealing with emergencies , involving everyone from the Disaster Emergency Committee, the UN, central and local government and municipalities, not for profit organisations and of course, the military. There is a clear reason why we need this kind of state emergency response; I’m not suggesting that we don’t.
But through the rise of open data and mass participation in platforms that share location, identity and inventory, we are creating a new kind of mesh; a social and technological infrastructure that could considerably strengthen our ability to respond to unpredictable events.
In the last few years we have seen a sharp rise in the number of tools and crowdsourcing platforms and open source sensor networks that are focused on observing, predicting or responding to extreme events:
• Apps like Shake Alert, which emits a minute warning that an earthquake is coming
• Rio’s sensor network, which measures rainfall outside the city and can predict flooding
• Open Source sensor software Arduino which is being used to crowd-source weather and pollution data
• Propeller Health, which is using Asthma sensors on inhalers to crowd-source pollution hotspots
• Safecast, which was developed for crowdsourcing radiation levels in Japan
Increasingly we have the ability to deploy open source, distributed and networked sensors and devices for capturing and aggregating data that can help us manage our responses to extreme weather (and indeed, other kinds of) events.
Look at platforms like LocalMind and Foursquare. Today, I might be using them to find out whether there’s a free table at a bar or finding out what restaurant my friends are in. But these kind of social locative platforms present an infrastructure that could be life-saving in any kind of situation where you need to know where to go quickly to get out of trouble. We know that in the wake of disruptive events and disasters, like bombings, riots etc, people now intuitively and instinctively take to technology to find out what’s happening, where to go and how to co-ordinate response efforts.
During the 2013 Bart Strike in San Francisco, ventures like Liquid Space and SideCar enabled people to quickly find alternative places to work, or alternatives to public transport, to mitigate the inconvenience of the strike. The strike was a minor inconvenience compared to the impact of a hurricane and flood but nevertheless, in both those instances, ventures decided waive their fees; as did AirBnB when 1,400 New York AirBnB hosts opened their doors to people who had been left homeless through Hurricane Sandy in 2012.
The impulse to help is not new. The matching of people’s offers of help and resources to on-the-ground need, in real time, is.”
Out in the Open: An Open Source Website That Gives Voters a Platform to Influence Politicians
Klint Finley in Wired: “This is the decade of the protest. The Arab Spring. The Occupy Movement. And now the student demonstrations in Taiwan.
Argentine political scientist Pia Mancini says we’re caught in a “crisis of representation.” Most of these protests have popped up in countries that are at least nominally democratic, but so many people are still unhappy with their elected leaders. The problem, Mancini says, is that elected officials have drifted so far from the people they represent, that it’s too hard for the average person to be heard.
“If you want to participate in the political system as it is, it’s really costly,” she says. “You need to study politics in university, and become a party member and work your way up. But not every citizen can devote their lives to politics.”
Democracy OS is designed to address that problem by getting citizens directly involved in debating specific proposals when their representatives are actually voting on them.
That’s why Mancini started the Net Democracy foundation, a not-for-profit that explores ways of improving civic engagement through technology. The foundation’s first project is something called Democracy OS, an online platform for debating and voting on political issues, and it’s already finding a place in the world. The federal government in Mexico is using this open-source tool to gather feedback on a proposed public data policy, and in Tunisia, a non-government organization called iWatch has adopted it in an effort to give the people a stronger voice.
Mancini’s dissatisfaction with electoral politics stems from her experience working for the Argentine political party Unión Celeste y Blanco from 2010 until 2012. “I saw some practices that I thought were harmful to societies,” she says. Parties were too interested in the appearances of the candidates, and not interested enough in their ideas. Worse, citizens were only consulted for their opinions once every two to four years, meaning politicians could get away with quite a bit in the meantime.
Democracy OS is designed to address that problem by getting citizens directly involved in debating specific proposals when their representatives are actually voting on them. It operates on three levels: one for gathering information about political issues, one for public debate about those issues, and one for actually voting on specific proposals.
Various communities now use a tool called Madison to discuss policy documents, and many activists and community organizations have adopted Loomio to make decisions internally. But Democracy OS aims higher: to provide a common platform for any city, state, or government to actually put proposals to a vote. “We’re able to actually overthrow governments, but we’re not using technology to decide what to do next,” Mancini says. “So the risk is that we create power vacuums that get filled with groups that are already very well organized. So now we need to take it a bit further. We need to decide what democracy for the internet era looks like.”
Software Shop as Political Party
Today Net Democracy is more than just a software development shop. It’s also a local political party based in Beunos Aires. Two years ago, the foundation started pitching the first prototype of the software to existing political parties as a way for them to gather feedback from constituents, but it didn’t go over well. “They said: ‘Thank you, this is cool, but we’re not interested,’” Mancini remembers. “So we decided to start our own political party.”
The Net Democracy Party hasn’t won any seats yet, but it promises that if it does, it will use Democracy OS to enable any local registered voter to tell party representatives how to vote. Mancini says the party representatives will always vote the way constituents tell them to vote through the software.
‘We’re not saying everyone should vote on every issue all the time. What were saying is that issues should be open for everyone to participate.’
She also uses the term “net democracy” to refer to the type of democracy that the party advocates, a form of delegative democracy that attempts to strike a balance between representative democracy and direct democracy. “We’re not saying everyone should vote on every issue all the time,” Mancini explains. “What were saying is that issues should be open for everyone to participate.”
Individuals will also be able to delegate their votes to other people. “So, if you’re not comfortable voting on health issues, you can delegate to someone else to vote for you in that area,” she says. “That way people with a lot of experience in an issue, like a community leader who doesn’t have lobbyist access to the system, can build more political capital.”
She envisions a future where decisions are made on two levels. Decisions that involve specific knowledge — macroeconomics, tax reforms, judiciary regulations, penal code, etc. — or that affect human rights are delegated “upwards” to representatives. But then decisions related to local issues — transport, urban development, city codes, etc. — cab be delegated “downwards” to the citizens.
The Secret Ballot Conundrum
Ensuring the integrity of the votes gathered via Democracy OS will be a real challenge. The U.S. non-profit organization Black Box Voting has long criticized electronic voting schemes as inherently flawed. “Our criticism of internet voting is that it is not transparent and cannot be made publicly transparent,” says Black Box Voting founder Bev Harris. “With transparency for election integrity defined as public ability to see and authenticate four things: who can vote, who did vote, vote count, and chain of custody.”
In short, there’s no known way to do a secret ballot online because any system for verifying that the votes were counted properly will inevitably reveal who voted for what.
Democracy OS deals with that by simply doing away with secret ballots. For now, the Net Democracy party will have people sign-up for Democracy OS accounts in person with their government issued ID cards. “There is a lot to be said about how anonymity allows you to speak more freely,” Mancini says. “But in the end, we decided to prioritize the reliability, accountability and transparency of the system. We believe that by making our arguments and decisions public we are fostering a civic culture. We will be more responsible for what we say and do if it’s public.”
But making binding decisions based on these online discussions would be problematic, since they would skew not just towards those tech savvy enough to use the software, but also towards those willing to have their names attached to their votes publicly. Fortunately, the software isn’t yet being used to gather real votes, just to gather public feedback….”
Findings of the Big Data and Privacy Working Group Review
John Podesta at the White House Blog: “Over the past several days, severe storms have battered Arkansas, Oklahoma, Mississippi and other states. Dozens of people have been killed and entire neighborhoods turned to rubble and debris as tornadoes have touched down across the region. Natural disasters like these present a host of challenges for first responders. How many people are affected, injured, or dead? Where can they find food, shelter, and medical attention? What critical infrastructure might have been damaged?
Drawing on open government data sources, including Census demographics and NOAA weather data, along with their own demographic databases, Esri, a geospatial technology company, has created a real-time map showing where the twisters have been spotted and how the storm systems are moving. They have also used these data to show how many people live in the affected area, and summarize potential impacts from the storms. It’s a powerful tool for emergency services and communities. And it’s driven by big data technology.
In January, President Obama asked me to lead a wide-ranging review of “big data” and privacy—to explore how these technologies are changing our economy, our government, and our society, and to consider their implications for our personal privacy. Together with Secretary of Commerce Penny Pritzker, Secretary of Energy Ernest Moniz, the President’s Science Advisor John Holdren, the President’s Economic Advisor Jeff Zients, and other senior officials, our review sought to understand what is genuinely new and different about big data and to consider how best to encourage the potential of these technologies while minimizing risks to privacy and core American values.
Over the course of 90 days, we met with academic researchers and privacy advocates, with regulators and the technology industry, with advertisers and civil rights groups. The President’s Council of Advisors for Science and Technology conducted a parallel study of the technological trends underpinning big data. The White House Office of Science and Technology Policy jointly organized three university conferences at MIT, NYU, and U.C. Berkeley. We issued a formal Request for Information seeking public comment, and hosted a survey to generate even more public input.
Today, we presented our findings to the President. We knew better than to try to answer every question about big data in three months. But we are able to draw important conclusions and make concrete recommendations for Administration attention and policy development in a few key areas.
There are a few technological trends that bear drawing out. The declining cost of collection, storage, and processing of data, combined with new sources of data like sensors, cameras, and geospatial technologies, mean that we live in a world of near-ubiquitous data collection. All this data is being crunched at a speed that is increasingly approaching real-time, meaning that big data algorithms could soon have immediate effects on decisions being made about our lives.
The big data revolution presents incredible opportunities in virtually every sector of the economy and every corner of society.
Big data is saving lives. Infections are dangerous—even deadly—for many babies born prematurely. By collecting and analyzing millions of data points from a NICU, one study was able to identify factors, like slight increases in body temperature and heart rate, that serve as early warning signs an infection may be taking root—subtle changes that even the most experienced doctors wouldn’t have noticed on their own.
Big data is making the economy work better. Jet engines and delivery trucks now come outfitted with sensors that continuously monitor hundreds of data points and send automatic alerts when maintenance is needed. Utility companies are starting to use big data to predict periods of peak electric demand, adjusting the grid to be more efficient and potentially averting brown-outs.
Big data is making government work better and saving taxpayer dollars. The Centers for Medicare and Medicaid Services have begun using predictive analytics—a big data technique—to flag likely instances of reimbursement fraud before claims are paid. The Fraud Prevention System helps identify the highest-risk health care providers for waste, fraud, and abuse in real time and has already stopped, prevented, or identified $115 million in fraudulent payments.
But big data raises serious questions, too, about how we protect our privacy and other values in a world where data collection is increasingly ubiquitous and where analysis is conducted at speeds approaching real time. In particular, our review raised the question of whether the “notice and consent” framework, in which a user grants permission for a service to collect and use information about them, still allows us to meaningfully control our privacy as data about us is increasingly used and reused in ways that could not have been anticipated when it was collected.
Big data raises other concerns, as well. One significant finding of our review was the potential for big data analytics to lead to discriminatory outcomes and to circumvent longstanding civil rights protections in housing, employment, credit, and the consumer marketplace.
No matter how quickly technology advances, it remains within our power to ensure that we both encourage innovation and protect our values through law, policy, and the practices we encourage in the public and private sector. To that end, we make six actionable policy recommendations in our report to the President:
Advance the Consumer Privacy Bill of Rights. Consumers deserve clear, understandable, reasonable standards for how their personal information is used in the big data era. We recommend the Department of Commerce take appropriate consultative steps to seek stakeholder and public comment on what changes, if any, are needed to the Consumer Privacy Bill of Rights, first proposed by the President in 2012, and to prepare draft legislative text for consideration by stakeholders and submission by the President to Congress.
Pass National Data Breach Legislation. Big data technologies make it possible to store significantly more data, and further derive intimate insights into a person’s character, habits, preferences, and activities. That makes the potential impacts of data breaches at businesses or other organizations even more serious. A patchwork of state laws currently governs requirements for reporting data breaches. Congress should pass legislation that provides for a single national data breach standard, along the lines of the Administration’s 2011 Cybersecurity legislative proposal.
Extend Privacy Protections to non-U.S. Persons. Privacy is a worldwide value that should be reflected in how the federal government handles personally identifiable information about non-U.S. citizens. The Office of Management and Budget should work with departments and agencies to apply the Privacy Act of 1974 to non-U.S. persons where practicable, or to establish alternative privacy policies that apply appropriate and meaningful protections to personal information regardless of a person’s nationality.
Ensure Data Collected on Students in School is used for Educational Purposes. Big data and other technological innovations, including new online course platforms that provide students real time feedback, promise to transform education by personalizing learning. At the same time, the federal government must ensure educational data linked to individual students gathered in school is used for educational purposes, and protect students against their data being shared or used inappropriately.
Expand Technical Expertise to Stop Discrimination. The detailed personal profiles held about many consumers, combined with automated, algorithm-driven decision-making, could lead—intentionally or inadvertently—to discriminatory outcomes, or what some are already calling “digital redlining.” The federal government’s lead civil rights and consumer protection agencies should expand their technical expertise to be able to identify practices and outcomes facilitated by big data analytics that have a discriminatory impact on protected classes, and develop a plan for investigating and resolving violations of law.
Amend the Electronic Communications Privacy Act. The laws that govern protections afforded to our communications were written before email, the internet, and cloud computing came into wide use. Congress should amend ECPA to ensure the standard of protection for online, digital content is consistent with that afforded in the physical world—including by removing archaic distinctions between email left unread or over a certain age.
We also identify several broader areas ripe for further study, debate, and public engagement that, collectively, we hope will spark a national conversation about how to harness big data for the public good. We conclude that we must find a way to preserve our privacy values in both the domestic and international marketplace. We urgently need to build capacity in the federal government to identify and prevent new modes of discrimination that could be enabled by big data. We must ensure that law enforcement agencies using big data technologies do so responsibly, and that our fundamental privacy rights remain protected. Finally, we recognize that data is a valuable public resource, and call for continuing the Administration’s efforts to open more government data sources and make investments in research and technology.
While big data presents new challenges, it also presents immense opportunities to improve lives, the United States is perhaps better suited to lead this conversation than any other nation on earth. Our innovative spirit, technological know-how, and deep commitment to values of privacy, fairness, non-discrimination, and self-determination will help us harness the benefits of the big data revolution and encourage the free flow of information while working with our international partners to protect personal privacy. This review is but one piece of that effort, and we hope it spurs a conversation about big data across the country and around the world.
Read the Big Data Report.
See the fact sheet from today’s announcement.“
This is what happens when you give social networking to doctors
CArmel DeAmicis in PandoDaily: “Dr. Gregory Kurio will never forget the time he was called to the ER because a epileptic girl was brought in suffering a cardiac arrest of sorts (HIPAA mandates he doesn’t give out the specific details of the situation). In the briefing, he learned the name of her cardiac physician who he happened to know through the industry. He subsequently called the other doctor and asked him to send over any available information on the patient — latest meds, EKGs, recent checkups, etc.
The scene in the ER was, to be expected, one of chaos, with trainees and respiratory nurses running around grabbing machinery and meds. Crucial seconds were ticking past, and Dr. Kurio quickly realized the fax machine was not the best approach for receiving the records he needed. ER fax machines are often on the opposite of the emergency room, take awhile to print lengthy of records, frequently run out of paper, and aren’t always reliable – not exactly the sort of technology you want when a patient’s life or death hangs in the midst.
Email wasn’t an option either, because HIPAA mandates that sensitive patient files are only sent through secure channels. With precious little time to waste, Dr. Kurio decided to take a chance on a new technology service he had just signed up for — Doximity.
Doximity is a LinkedIn for Doctors of sorts. It has, as one feature, a secure e-fax system that turns faxes into digital messages and sends them to a user’s mobile device. Dr. Kurio gave the other physician his e-fax number, and a little bit of techno-magic happened.
….
With a third of the nation’s doctors on the platform, today Doximity announced a $54 million Series C from DFJ, T. Rowe Price Associates, Morgan Stanley, and existing investors. The funding news isn’t particularly important, in and of itself, aside from the fact that the company is attracting the attention of private market investors very early in its growth trajectory. But it’s a good opportunity to take a look at Doximity’s business model, how it mirrors the upwards growth of other vertical professional social networks (say that five times fast), and the way it’s transforming our healthcare providers’ jobs.
Doximity works, in many ways, just like LinkedIn. Doctors have profiles with pictures and their resume, and recruiters pay the company to message medical professionals. “If you think it’s hard to find a Ruby developer in San Francisco, try to find an emergency room physician in Indiana,” Doximity CEO Jeff Tangney says. One recruiter’s pain is a smart entrepreneur’s pleasure — a simple, straightforward monetization strategy.
But unlike LinkedIn, Doximity can dive much deeper on meeting doctors’ needs through specialized features like the e-fax system. It’s part of the reason Konstantin Guericke, one of LinkedIn’s “forgotten” co-founders, was attracted to the company and decided to join the board as an advisor. “In some ways, it’s a lot like LinkedIn,” Guericke says, when asked why he decided to help out. “But for me it’s the pleasure of focusing on a more narrow audience and making more of an impact on their life.”
In another such high-impact, specialized feature, doctors can access Doximity’s Google Alerts-like system for academic articles. They can sign up to receive notifications when stories are published about their obscure specialties. That means time-strapped physicians gain a more efficient way to stay up to date on all the latest research and information in their field. You can imagine that might impact the quality of the care they provide.
Lastly, Doximity offers a secure messaging system, allowing doctors to email one another regarding a fellow patient. Such communication is a thorny issue for doctors given HIPPA-related privacy requirements. There are limited ways to legally update say, a primary care physician when a specialist learns one of their patients has colon cancer. It turns into a big game of phone tag to relay what should be relatively straightforward information. Furthermore, leaving voicemails and sending faxes can result in details getting lost in what its an searchable system.
The platform is free for doctors, and it has attracted them quickly join in droves. Doximity co-founder and CEO Jeff Tangney estimates that last year the platform had added 15 to 16 percent of US doctors. But this year, the company claims it’s “on track to have half of US physicians as members by this summer.” Fairly impressive growth rate and market penetration.
With great market penetration comes great power. And dollars. Although the company is only monetizing through recruitment at the moment, the real money to be made with this service is through targeted advertising. Think about how much big pharma and medtech companies would be willing to cough up to to communicate at scale with the doctors who make purchasing decisions. Plus, this is an easy way for them to target industry thought leaders or professionals with certain specialties.
Doximity’s founders’ and investors’ eyes might be seeing dollar signs, but they haven’t rolled anything out yet on the advertising front. They’re wary and want to do so in a way that ads value to all parties while avoiding pissing off medical professionals. When they finally pul lthe trigger, however, it’s has the potential to be a Gold Rush.
Doximity isn’t the only company to have discovered there’s big money to be made in vertical professional social networks. As Pando has written, there’s a big trend in this regard. Spiceworks, the social network for IT professionals which claims to have a third of the world’s IT professionals on the site, just raised $57 million in a round led by none other than Goldman Sachs. Why does the firm have such faith in a free social network for IT pros — seemingly the most mundane and unprofitable of endeavors? Well, just like with doctor and pharma corps, IT companies are willing to shell out big to market their wares directly to such IT pros.
Although the monetization strategies differ from business to business, ResearchGate is building a similar community with a social network of scientists around the world, Edmodo is doing it with educators, GitHub with developers, GrabCAD for mechanical engineers. I’ve argued that such vertical professional social networks are a threat to LinkedIn, stealing business out from under it in large industry swaths. LinkedIn cofounder Konstantin Guericke disagrees.
“I don’t think it’s stealing revenue from them. Would it make sense for LinkedIn to add a profile subset about what insurance someone takes? That would just be clutter,” Guericke says. “It’s more going after an opportunity LinkedIn isn’t well positioned to capitalize on. They could do everything Doximity does, but they’d have to give up something else.”
All businesses come with their own challenges, and Doximity will certainly face its share of them as it scales. It has overcome the initial hurdle of achieving the network effects that come with penetrating the a large segment of the market. Next will come monetizing sensitively and continuing to protecting users — and patients’ — privacy.
There are plenty of data minefields to be had in a sector as closely regulated as healthcare, as fellow medical startup Practice Fusion recently found out. Doximity has to make sure its system for onboarding and verifying new doctors is airtight. The company has already encountered some instances of individuals trying to pose as medical professionals to get access to another’s records — specifically a former lover trying to chase down their ex-spouse’s STI tests. One blowup where the company approves someone they shouldn’t or hackers break into the system, and doctors could lose trust in the safety of the technology….”
Using data to treat the sickest and most expensive patients
Dan Gorenstein for Marketplace (radio): “Driving to a big data conference a few weeks back, Dr. Jeffrey Brenner brought his compact SUV to a full stop – in the middle of a short highway entrance ramp in downtown Philadelphia…
Here’s what you need to know about Dr. Jeffrey Brenner: He really likes to figure out how things work. And he’s willing to go to extremes to do it – so far that he’s risking his health policy celebrity status.
Perhaps it’s not the smartest move from a guy who just last fall was named a MacArthur Genius, but this month, Brenner began to test his theory for treating some of the sickest and most expensive patients.
“We can actually take the sickest and most complicated patients, go to their bedside, go to their home, go with them to their appointments and help them for about 90 days and dramatically improve outcomes and reduce cost,” he says.
That’s the theory anyway. Like many ideas when it comes to treating the sickest patients, there’s little data to back up that it works.
Brenner’s willing to risk his reputation precisely because he’s not positive his approach for treating folks who cycle in and out of the healthcare system — “super-utilizers” — actually works.
“It’s really easy for me at this point having gotten a MacArthur award to simply declare what we do works and to drive this work forward without rigorously testing it,” Brenner said. “We are not going to do that,” he said. “We don’t think that’s the right thing to do. So we are going to do a randomized controlled trial on our work and prove whether it works and how well it works.”
Helping lower costs and improve care for the super-utilizers is one of the most pressing policy questions in healthcare today. And given its importance, there is a striking lack of data in the field.
People like to call randomized controlled trials (RCTs) the gold standard of scientific testing because two groups are randomly assigned – one gets the treatment, while the other doesn’t – and researchers closely monitor differences.
But a 2012 British Medical Journal article found over the last 25 years, a total of six RCTs have focused on care delivery for super-utilizers.
Perhaps it’s not the smartest move from a guy who just last fall was named a MacArthur Genius, but this month, Brenner began to test his theory for treating some of the sickest and most expensive patients.
“We can actually take the sickest and most complicated patients, go to their bedside, go to their home, go with them to their appointments and help them for about 90 days and dramatically improve outcomes and reduce cost,” he says.
That’s the theory anyway. Like many ideas when it comes to treating the sickest patients, there’s little data to back up that it works.
Brenner’s willing to risk his reputation precisely because he’s not positive his approach for treating folks who cycle in and out of the healthcare system — “super-utilizers” — actually works.
“It’s really easy for me at this point having gotten a MacArthur award to simply declare what we do works and to drive this work forward without rigorously testing it,” Brenner said. “We are not going to do that,” he said. “We don’t think that’s the right thing to do. So we are going to do a randomized controlled trial on our work and prove whether it works and how well it works.”
Helping lower costs and improve care for the super-utilizers is one of the most pressing policy questions in healthcare today. And given its importance, there is a striking lack of data in the field.
People like to call randomized controlled trials (RCTs) the gold standard of scientific testing because two groups are randomly assigned – one gets the treatment, while the other doesn’t – and researchers closely monitor differences.
But a 2012 British Medical Journal article found over the last 25 years, a total of six RCTs have focused on care delivery for super-utilizers.
…Every major health insurance company – Medicare and Medicaid, too – has spent billions on programs for super-utilizers. The absence of rigorous evidence raises the question: Is all this effort built on health policy quicksand?
Not being 100 percent sure can be dangerous, says Duke behavioral scientist Peter Ubel, particularly in healthcare.
Ubel said back in the 1980s and 90s doctors prescribed certain drugs for irregular heartbeats. The medication, he said, made those weird rhythms go away, leaving beautiful-looking EKGs.
“But no one had tested whether people receiving these drugs actually lived longer, and many people thought, ‘Why would you do that? We can look at their cardiogram and see that they’re getting better,’” Ubel said. “Finally when somebody put that evidence to the test of a randomized trial, it turned out that these drugs killed people.”
WellPoint’s Nussbaum said he hoped Brenner’s project would inspire others to follow his lead and insert data into the discussion.
“I believe more people should be bold in challenging the status quo of our delivery system,” Nussbaum said. “The Jeff Brenners of the world should be embraced. We should be advocating for them to take on these studies.”
So why aren’t more healthcare luminaries putting their brilliance to the test? There are a couple of reasons.
Harvard economist Kate Baicker said until now there have been few personal incentives pushing people.
“If you’re focused on branding and spreading your brand, you have no incentive to say, ‘How good is my brand after all?’” she said.
And Venrock healthcare venture capitalist Bob Kocher said no one would fault Brenner if he put his brand before science, an age-old practice in this business.
“Healthcare has benefitted from the fact that you don’t understand it. It’s a bit of an art, and it hasn’t been a science,” he said. “You made money in healthcare by putting a banner outside your building saying you are a top something without having to justify whether you really are top at whatever you do.”
Duke’s Ubel said it’s too easy – and frankly, wrong – to say the main reason doctors avoid these rigorous studies is because they’re afraid to lose money and status. He said doctors aren’t immune from the very human trap of being sure their own ideas are right.
He says psychologists call it confirmation bias.
“Everything you see is filtered through your hopes, your expectations and your pre-existing beliefs,” Ubel said. “And that’s why I might look at a grilled cheese sandwich and see a grilled cheese sandwich and you might see an image of Jesus,” he says.
Even with all these hurdles, MIT economist Amy Finkelstein – who is running the RCT with Brenner – sees change coming.
“Providers have a lot more incentive now than they use to,” she said. “They have much more skin in the game.”
Finkelstein said hospital readmission penalties and new ways to pay doctors are bringing market incentives that have long been missing.
Brenner said he accepts that the truth of what he’s doing in Camden may be messier than the myth.
The California Report Card
“The California Report Card (CRC) is an online platform developed by the CITRIS Data and Democracy Initiative at UC Berkeley and Lt. Governor Gavin Newsom that explores how smartphones and networks can enhance communication between the public and government leaders. The California Report Card allows visitors to grade issues facing California and to suggest issues for future report cards.
The CRC is a mobile-optimized web application that allows participants to advise the state government on timely policy issues. We are exploring how technology can streamline and structure input from the public to elected officials, to provide them with timely feedback on the changing opinions and priorities of their constituents.
Version 1.0 of the CRC was launched in California on 28 January 2014. Since then, over 7000 people from almost every county have assigned over 20,000 grades to the State of California and suggested issues for the next report card.
Lt. Governor Gavin Newsom: “The California Report Card is a new way for me to keep an ear to the ground. This new app/website makes it easy for Californians to assign grades and suggest pressing issues that merit our attention. In the first few weeks, participants conveyed that they approve of our rollout of Obamacare but are very concerned about the future of California schools and universities. I’m also gaining insights on issues ranging from speed limits to fracking to disaster preparedness.”
“This platform allows us to have our voices heard. The ability to review and grade what others suggest is important. It enables us and elected officials to hear directly how Californians feel.” – Matt Harris, Truck Driver, Ione, CA
“This is the first system that lets us directly express our feelings to government leaders. I also really enjoy reading and grading the suggestions from other participants.” – Patricia Ellis Pasko, Senior Care Giver, Apple Valley, CA
“Everyone knows that report cards can motivate learning by providing quantitative feedback on strengths and weaknesses. Similarly, the California Report Card has potential to motivate Californians and their leaders to learn from each other about timely issues. As researchers, the patterns of participation and how they vary over time and across geography will help us learn how to design future platforms.” – Prof. Ken Goldberg, UC Berkeley.
It takes only two minutes and works on all screens (best on mobile phones held vertically), just click “Participate“.
Anyone can participate by taking a few minutes to assign grades to the State of California on issues such as: Healthcare, Education, Marriage Equality, Immigrant Rights, and Marijuana Decriminalization. Participants are also invited to enter an online “cafe” to propose issues that they’d like to see included in the next report card (version 2.0 will come out later this Spring).
Lt. Gov. Gavin Newsom and UC Berkeley Professor Ken Goldberg reviewed the data and lessons learned from version 1.0 in a public forum at UC Berkeley on 20 March 2014 that included participants who actively contributed to identifying the most important issues for version 2.0. The event can be viewed at http://bit.ly/1kv6523.
We offer community outreach programs/workshops to train local leaders on how to use the CRC and how to reach and engage under-represented groups (low-income, rural, persons with disabilities, etc.). If you are interested in participating in or hosting a workshop, please contact Brandie Nonnecke at nonnecke@citris-uc.org”
UK Department of Health: Citizen Space
Sarah Wood at the UK Department of Health: “We recently ran a survey of our internal DH Citizen Space users. Citizen Space is the digital tool that DH and a number of other local and central Government Departments use to run their consultations.
Overall, our survey results were positive with staff reporting they had found the tool relatively easy to use and access. The survey did flag some internal issues eg. visibility of the tool in the Department, minor technical issues etc, which we’re planning to address through better promotion of Citizen Space and training, but on the whole our internal user experience seemed to be good.
However, there was one area where internal users did seem to be experiencing problems, and ironically it wasn’t with the tool itself. Many of our survey respondents seemed to be struggling with the analysis of their consultation responses, with some teams even questioning the usefulness of the data they were amassing from their digital consultations.
Some common mistakes
To help us get to the bottom of what was going on, we contacted some of our respondents and met with some consultation teams to talk about how they design, run and analyse the responses from their digital consultations. We found some common mistakes:
- Not thinking ‘digital first’ – not designing consultations with a digital audience and digital responses in mind. Eg. writing consultations for print and then trying to shoehorn them into a digital tool
- Not identifying what ‘real’ success means for a consultation before launching it or not putting in place the metrics needed to measure for success. Eg. not setting benchmarks, not measuring qualitative data or not identifying key target audiences and how to reach them.
- Not thinking about the type and/or amount of data that will be returned and planning resources and tools accordingly. Eg. asking lots of free-text questions and then drowning in responses
As a team, we are trying to address many of these issues by improving the way the Department approaches and designs its digital consultations. The next iteration of our Digital policymaking toolkit, which will combine a new set of Policy Standards with our digital tools, techniques and advice for policymakers, should help. Alongside other work our team is doing to build up digital capability in the department and to produce analytical tools for data mining and sentiment analysis that will help teams with free-text analysis.
…how to use or build a consultation in Citizen Space, you can find one of those in the Citizen Space User Guide and further guides and user forums on the Citizen Space Knowledge Base website.
Twenty-one European Cities Advance in Bloomberg Philanthropies' Mayors Challenge Competition to Create Innovative Solutions to Urban Challenges
Press Release: “Bloomberg Philanthropies today revealed the 21 European cities that have emerged as final contenders in its 2013-2014 Mayors Challenge, a competition to inspire cities to generate innovative ideas that solve major challenges and improve city life, and that ultimately can spread to other cities. One grand prize winner will receive €5 million for the most creative and transferable idea. Four additional cities will be awarded €1 million, and all will be announced in the fall. The finalists’ proposed solutions address some of Europe’s most critical issue areas: youth unemployment, aging populations, civic engagement, economic development, environment and energy concerns, public health and safety, and making government more efficient…
James Anderson, the head of government innovation for Bloomberg Philanthropies, said: “While the ideas are very diverse, we identified key themes. The ideas tended toward networked, distributed solutions as opposed to costly centralized ones. There was a lot of interest in citizen engagement as both a means and end. Technology that concretely and positively affects the lives of individual citizens – from the blind person in Warsaw to the unemployed youth in Amsterdam to the homeowner in Schaerbeek — also played a significant role.”
Bloomberg Philanthropies staff and an independent selection committee of 12 members from across Europe closely considered each application over multiple rounds of review, culminating in feedback and selection earlier this month, resulting in 21 cities’ ideas moving forward for further development. The submissions will be judged on four critieria: vision, potential for impact, implementation plan, and potential to spread to other cities. The finalists and their ideas are:
- AMSTERDAM, Netherlands – Youth Unemployment: Tackling widespread youth unemployment by equipping young people with 21st century skills and connecting them with jobs and apprenticeships across Europe through an online game
- ATHENS, Greece – Civic Engagement: Empowering citizens with a new online platform to address the large number of small-scale urban challenges accelerated by the Greek economic crisis
- BARCELONA, Spain – Aging: Improving quality of life and limiting social isolation by establishing a network of public and private support – including family, friends, social workers, and volunteers – for each elderly citizen
- BOLOGNA, Italy – Youth Unemployment: Building an urban scale model of informal education labs and civic engagement to prevent youth unemployment by teaching children aged 6-16 entrepreneurship and 21st century skills
- BRISTOL, United Kingdom – Health/Anti-obesity: Tackling obesity and unemployment by creating a new economic system that increases access to locally grown, healthy foods
- BRNO, Czech Republic – Public Safety/Civic Engagement: Engaging citizens in keeping their own communities safe to build social cohesion and reduce crime
- CARDIFF, United Kingdom – Economic Development: Increasing productivity little by little in residents’ personal and professional lives, so that a series of small improvements add up to a much more productive city
- FLORENCE, Italy – Economic Development: Combatting unemployment with a new economic development model that combines technology and social innovation, targeting the city’s historic artisan and maker community
- GDAŃSK, Poland – Civic Engagement: Re-instilling faith in local democracy by mandating that city government formally debate local issues put forward by citizens
- KIRKLEES, United Kingdom – Social Capital: Pooling the city and community’s idle assets – from vehicles to unused spaces to citizens’ untapped time and expertise – to help the area make the most of what it has and do more with less
- KRAKOW, Poland – Transportation: Implementing smart, personalized transportation incentives and a seamless and unified public transit payment system to convince residents to opt for greener modes of transportation
- LISBON, Portugal – Energy: Transforming wasted kinetic energy generated by the city’s commuting traffic into electricity, reducing the carbon footprint and increasing environmental sustainability
- LONDON, United Kingdom – Public Health: Empowering citizens to monitor and improve their own health through a coordinated, multi-stakeholder platform and new technologies that dramatically improve quality of life and reduce health care costs
- MADRID, Spain – Energy: Diversifying its renewable energy options by finding and funding the best ways to harvest underground power, such as wasted heat generated by the city’s below-ground infrastructure
- SCHAERBEEK, Belgium – Energy: Using proven flyover and 3D geothermal mapping technology to provide each homeowner and tenant with a personalized energy audit and incentives to invest in energy-saving strategies
- SOFIA, Bulgaria – Civic Engagement: Transforming public spaces by deploying mobile art units to work side-by-side with local residents, re-envisioning and rejuvenating underused spaces and increasing civic engagement
- STARA ZAGORA, Bulgaria – Economic Development: Reversing the brain-drain of the city’s best and brightest by helping young entrepreneurs turn promising ideas into local high-tech businesses
- STOCKHOLM, Sweden – Environment: Combatting climate change by engaging citizens to produce biochar, an organic material that increases tree growth, sequesters carbon, and purifies storm runoff
- THE HAGUE, Netherlands – Civic Engagement: Enabling citizens to allocate a portion of their own tax money to support the local projects they most believe in
- WARSAW, Poland – Transportation/Accessibility: Enabling the blind and visually impaired to navigate the city as easily as their sighted peers by providing high-tech auditory alerts which will save them travel time and increase their independence
- YORK, United Kingdom – Government Systems: Revolutionizing the way citizens, businesses, and others can propose new ideas to solve top city problems, providing a more intelligent way to acquire or develop the best solutions, thus enabling greater civic participation and saving the city both time and money
Further detail and related elements for this year’s Mayors Challenge can be found via: http://mayorschallenge.bloomberg.org/”