Apple’s ResearchKit Is a New Way to Do Medical Research

Curated on Posted on by Stefaan Verhulst

Wired: “….Apple announced a new software framework it hopes will help turn the 700 million iPhones in users’ hands into medical diagnostic tools.

ResearchKit is an open-source framework that lets medical researchers create diagnostic apps that tap into the screens and accelerometers on the iPhone, as well as data from HealthKit apps. The first five apps built with ResearchKit are available today, and they’re built to help diagnose various disorders.

Apple Senior Vice President of Operations Jeff Williams detailed some of the specialized applications available at launch. They include the mPower app, which is built to gauge the effects of Parkinsons’ Disease and was developed in conjunction with the University of Rochester, Xuanwu Hospital at Capital Medical University in Beijing, and Sage Bionetworks.

On stage, Williams demoed tests within the app that could measure hand tremors by using an iPhone touchscreen, vocal trembling using the microphone, and a walking balance test.

Williams said he hopes ResearchKit can help address a few problems with medical research in its current state, such as limited patient participation, infrequent data sampling, and one-way communication from the patient to a medical professional. The ResearchKit apps are designed to be more interactive and allow a patient to control when and with whom to share data.

Along with the mPower demo, Williams mentioned a few more apps that will be available immediately for iOS: a diabetes-diagnostic app from Massachusetts General Hospital; an app to diagnose heart disease from Stanford and the University of Oxford; an Asthma Health app from Mount Sinai Hospital and Weill Cornell Medical College; and an app to help victims of breast cancer made by the Dana-Farber Cancer Institute, UCLA School of Public Health, Penn Medicine, and Sage Bionetworks.

Williams also stressed that customers would be able to control the data shared by each ResearchKit app, and that sensitive data would only be visible by medical researchers….(More)”

Tweets Can Predict Health Insurance Exchange Enrollment

Curated on Posted on by Stefaan Verhulst

PennMedicine: “An increase in Twitter sentiment (the positivity or negativity of tweets) is associated with an increase in state-level enrollment in the Affordable Care Act’s (ACA) health insurance marketplaces — a phenomenon that points to use of the social media platform as a real-time gauge of public opinion and provides a way for marketplaces to quickly identify enrollment changes and emerging issues. Although Twitter has been previously used to measure public perception on a range of health topics, this study, led by researchers at the Perelman School of Medicine at the University of Pennsylvania and published online in the Journal of Medical Internet Research, is the first to look at its relationship with the new national health insurance marketplace enrollment.

The study examined 977,303 ACA and “Obamacare”-related tweets — along with those directed toward the Twitter handle for HealthCare.gov and the 17 state-based marketplace Twitter accounts — in March 2014, then tested a correlation of Twitter sentiment with marketplace enrollment by state. Tweet sentiment was determined using the National Research Council (NRC) sentiment lexicon, which contains more than 54,000 words with corresponding sentiment weights ranging from positive to negative. For example, the word “excellent” has a positive sentiment weight, and is more positive than the word “good,” but the word “awful” is negative. Using this lexicon, researchers found that a .10 increase in the sentiment of tweets was associated with a nine percent increase in health insurance marketplace enrollment at the state level. While a .10 increase may seem small, these numbers indicate a significant correlation between Twitter sentiment and enrollment based on a continuum of sentiment scores that were examined over a million tweets.

“The correlation between Twitter sentiment and the number of eligible individuals who enrolled in a marketplace plan highlights the potential for Twitter to be a real-time monitoring strategy for future enrollment periods,” said first author Charlene A. Wong, MD, a Robert Wood Johnson Foundation Clinical Scholar and Fellow in Penn’s Leonard Davis Institute of Health Economics. “This would be especially valuable for quickly identifying emerging issues and making adjustments, instead of having to wait weeks or months for that information to be released in enrollment reports, for example.”…(More)”

Public Participation for 21st Century Democracy

Curated on Posted on by Stefaan Verhulst

Book by Tina Nabatchi, and Matt Leighninger: “…Public Participation for 21st Century Democracy explores the theory and practice of public participation in decision-making and problem-solving. It examines how public participation developed over time to include myriad thick, thin, and conventional opportunities, occurring in both face-to-face meetings and online settings. The book explores the use of participation in various arenas, including education, health, land use, and state and federal government. It offers a practical framework for thinking about how to engage citizens effectively, and clear explanations of participation scenarios, tactics, and designs. Finally, the book provides a sensible approach for reshaping our participation infrastructure to meet the needs of public officials and citizens.
The book is filled with illustrative examples of innovative participatory activities, and numerous sources for more information. This important text puts the spotlight on the need for long-term, cross-sector, participation planning, and provides guidance for leaders, citizens, activists, and others who are determined to improve the ways that participation and democracy function. Public Participation for 21st Century Democracy:

  • Helps students and practitioners understand the history, theory, and practice  of public participation
  • Contains a wealth of case studies that explore the application of public participation in different settings
  • Covers vital issues such as education, health, land use, and state and federal government
  • Has accompanying instructor resources, such as PowerPoint slides, discussion questions, sample assignments, case studies and research from www.participedia.net, and classroom activities. …(more)”

Platform lets patients contribute to their own medical records

Curated on Posted on by Stefaan Verhulst

Springwise: “Those with complex medical conditions often rely heavily on their own ability to communicate their symptoms in short — and sometimes stressful — healthcare visits. We have recently seen Ginger.io, a smartphone app which uses big data to improve communication between patients and clinicians in between visits, and now OurNotes is a Commonwealth grant funded program that will enable patients to contribute to their own electronic medical records.
The scheme, currently being researched at Beth Isreal Deaconess Medical Centre in Boston and four other sites in the US, is part of a countrywide initiative called OpenNotes, which has already enabled five million patients to read their medical records online. Since an initial pilot scheme in 2012, OpenNotes has met with great success — creating improved communication between patients and doctors, and making patients feel more in control of their healthcare and treatments.
The new OurNotes scheme is expected to have particular benefits for medically complex patients who have have multiple chronic health conditions. It will enable patients to make notes on an upcoming visit, listing topics and questions they want to cover. In turn, this presents doctors with an opportunity to prepare and research for tricky or niche questions before meeting their patient…(More)”

Governance in the Information Era

Curated on Posted on by Stefaan Verhulst

New book edited by Erik W. Johnston:” Policy informatics is addressing governance challenges and their consequences, which span the seeming inability of governments to solve complex problems and the disaffection of people from their governments. Policy informatics seeks approaches that enable our governance systems to address increasingly complex challenges and to meet the rising expectations of people to be full participants in their communities. This book approaches these challenges by applying a combination of the latest American and European approaches in applying complex systems modeling, crowdsourcing, participatory platforms and citizen science to explore complex governance challenges in domains that include education, environment, and health.(More)

City Governments Are Using Yelp to Tell You Where Not to Eat

Curated on Posted on by Stefaan Verhulst

Michael Luca and Luther Lowe at HBR Blog: “…in recent years consumer-feedback platforms like TripAdvisor, Foursquare, and Chowhound have transformed the restaurant industry (as well as the hospitality industry), becoming important guides for consumers. Yelp has amassed about 67 million reviews in the last decade. So it’s logical to think that these platforms could transform hygiene awareness too — after all, people who contribute to review sites focus on some of the same things inspectors look for.

It turns out that one way user reviews can transform hygiene awareness is by helping health departments better utilize their resources. The deployment of inspectors is usually fairly random, which means time is often wasted on spot checks at clean, rule-abiding restaurants. Social media can help narrow the search for violators.
Within a given city or area, it’s possible to merge the entire history of Yelp reviews and ratings — some of which contain telltale words or phrases such as “dirty” and “made me sick” — with the history of hygiene violations and feed them into an algorithm that can predict the likelihood of finding problems at reviewed restaurants. Thus inspectors can be allocated more efficiently.
In San Francisco, for example, we broke restaurants into the top half and bottom half of hygiene scores. In a recent paper, one of us (Michael Luca, with coauthor Yejin Choi and her graduate students) showed that we could correctly classify more than 80% of restaurants into these two buckets using only Yelp text and ratings. In the next month, we plan to hold a contest on DrivenData to get even better algorithms to help cities out (we are jointly running the contest). Similar algorithms could be applied in any city and in other sorts of prediction tasks.
Another means for transforming hygiene awareness is through the sharing of health-department data with online review sites. The logic is simple: Diners should be informed about violations before they decide on a destination, rather than after.
Over the past two years, we have been working with cities to help them share inspection data with Yelp through an open-data standard that Yelp created in 2012 to encourage officials to put their information in places that are more useful to consumers. In San Francisco, Los Angeles, Raleigh, and Louisville, Kentucky, customers now see hygiene data alongside Yelp reviews. There’s evidence that users are starting to pay attention to this data — click-through rates are similar to those for other features on Yelp ….

And there’s no reason this type of data sharing should be limited to restaurant-inspection reports. Why not disclose data about dentists’ quality and regulatory compliance via Yelp? Why not use data from TripAdvisor to help spot bedbugs? Why not use Twitter to understand what citizens are concerned about, and what cities can do about it? Uses of social media data for policy, and widespread dissemination of official data through social media, have the potential to become important means of public accountability. (More)

Unleashing the Power of Data to Serve the American People

Curated on Posted on by Stefaan Verhulst

“Memorandum: Unleashing the Power of Data to Serve the American People
To: The American People
From: Dr. DJ Patil, Deputy U.S. CTO for Data Policy and Chief Data Scientist

….While there is a rich history of companies using data to their competitive advantage, the disproportionate beneficiaries of big data and data science have been Internet technologies like social media, search, and e-commerce. Yet transformative uses of data in other spheres are just around the corner. Precision medicine and other forms of smarter health care delivery, individualized education, and the “Internet of Things” (which refers to devices like cars or thermostats communicating with each other using embedded sensors linked through wired and wireless networks) are just a few of the ways in which innovative data science applications will transform our future.

The Obama administration has embraced the use of data to improve the operation of the U.S. government and the interactions that people have with it. On May 9, 2013, President Obama signed Executive Order 13642, which made open and machine-readable data the new default for government information. Over the past few years, the Administration has launched a number of Open Data Initiatives aimed at scaling up open data efforts across the government, helping make troves of valuable data — data that taxpayers have already paid for — easily accessible to anyone. In fact, I used data made available by the National Oceanic and Atmospheric Administration to improve numerical methods of weather forecasting as part of my doctoral work. So I know firsthand just how valuable this data can be — it helped get me through school!

Given the substantial benefits that responsibly and creatively deployed data can provide to us and our nation, it is essential that we work together to push the frontiers of data science. Given the importance this Administration has placed on data, along with the momentum that has been created, now is a unique time to establish a legacy of data supporting the public good. That is why, after a long time in the private sector, I am returning to the federal government as the Deputy Chief Technology Officer for Data Policy and Chief Data Scientist.

Organizations are increasingly realizing that in order to maximize their benefit from data, they require dedicated leadership with the relevant skills. Many corporations, local governments, federal agencies, and others have already created such a role, which is usually called the Chief Data Officer (CDO) or the Chief Data Scientist (CDS). The role of an organization’s CDO or CDS is to help their organization acquire, process, and leverage data in a timely fashion to create efficiencies, iterate on and develop new products, and navigate the competitive landscape.

The Role of the First-Ever U.S. Chief Data Scientist

Similarly, my role as the U.S. CDS will be to responsibly source, process, and leverage data in a timely fashion to enable transparency, provide security, and foster innovation for the benefit of the American public, in order to maximize the nation’s return on its investment in data.

So what specifically am I here to do? As I start, I plan to focus on these four activities:

…(More)”

Choosing Not to Choose: Understanding the Value of Choice

Curated on Posted on by Stefaan Verhulst

New book by Cass Sunstein: “Our ability to make choices is fundamental to our sense of ourselves as human beings, and essential to the political values of freedom-protecting nations. Whom we love; where we work; how we spend our time; what we buy; such choices define us in the eyes of ourselves and others, and much blood and ink has been spilt to establish and protect our rights to make them freely.
Choice can also be a burden. Our cognitive capacity to research and make the best decisions is limited, so every active choice comes at a cost. In modern life the requirement to make active choices can often be overwhelming. So, across broad areas of our lives, from health plans to energy suppliers, many of us choose not to choose. By following our default options, we save ourselves the costs of making active choices. By setting those options, governments and corporations dictate the outcomes for when we decide by default. This is among the most significant ways in which they effect social change, yet we are just beginning to understand the power and impact of default rules. Many central questions remain unanswered: When should governments set such defaults, and when should they insist on active choices? How should such defaults be made? What makes some defaults successful while others fail?….
The onset of big data gives corporations and governments the power to make ever more sophisticated decisions on our behalf, defaulting us to buy the goods we predictably want, or vote for the parties and policies we predictably support. As consumers we are starting to embrace the benefits this can bring. But should we? What will be the long-term effects of limiting our active choices on our agency? And can such personalized defaults be imported from the marketplace to politics and the law? Confronting the challenging future of data-driven decision-making, Sunstein presents a manifesto for how personalized defaults should be used to enhance, rather than restrict, our freedom and well-being. (More)”

Nudge Concept App Hopes To Point Pre-Diabetics Toward A Healthier Lifestyle

Curated on Posted on by Stefaan Verhulst

at FastCompany: “A new concept app from the London office of design and innovation consultancy Smart Design aims to improve the health of a large portion of the world’s population, a segment for whom weight loss can be a matter of life and death: diabetics.
Nudge is a concept app aimed at pre-diabetics—people with a high risk of developing type 2 diabetes—to change their eating habits. Described as a “personal nutritionist disguised as a shopping assistant,” the app keeps track of a user’s weekly grocery shopping using a phone’s camera to scan products on store shelves. The app looks for purchasing patterns that can be improved, and suggests healthy alternatives—like substituting red rice for white rice, or maybe even quinoa—to nudge the individual toward making better decisions. The idea is to help pre-diabetics make small, incremental changes.

…(More)”

Fifty Shades of Manipulation

Curated on Posted on by Stefaan Verhulst

New paper by Cass Sunstein: “A statement or action can be said to be manipulative if it does not sufficiently engage or appeal to people’s capacity for reflective and deliberative choice. One problem with manipulation, thus understood, is that it fails to respect people’s autonomy and is an affront to their dignity. Another problem is that if they are products of manipulation, people’s choices might fail to promote their own welfare, and might instead promote the welfare of the manipulator. To that extent, the central objection to manipulation is rooted in a version of Mill’s Harm Principle: People know what is in their best interests and should have a (manipulation-free) opportunity to make that decision. On welfarist grounds, the norm against manipulation can be seen as a kind of heuristic, one that generally works well, but that can also lead to serious errors, at least when the manipulator is both informed and genuinely interested in the welfare of the chooser.
For the legal system, a pervasive puzzle is why manipulation is rarely policed. The simplest answer is that manipulation has so many shades, and in a social order that values free markets and is committed to freedom of expression, it is exceptionally difficult to regulate manipulation as such. But as the manipulator’s motives become more self-interested or venal, and as efforts to bypass people’s deliberative capacities becomes more successful, the ethical objections to manipulation become very forceful, and the argument for a legal response is fortified. The analysis of manipulation bears on emerging first amendment issues raised by compelled speech, especially in the context of graphic health warnings. Importantly, it can also help orient the regulation of financial products, where manipulation of consumer choices is an evident but rarely explicit concern….(More)”.