health

Can Open Data Drive Innovative Healthcare?

Curated on September 26, 2015August 3, 2018 by Stefaan Verhulst

Will Greene at Huffington Post: “As healthcare systems worldwide become increasingly digitized, medical scientists and health researchers have more data than ever. Yet much valuable health information remains locked in proprietary or hidden databases. A growing number of open data initiatives aim to change this, but it won’t be easy….

To overcome these challenges, a growing array of stakeholders — including healthcare and tech companies, research institutions, NGOs, universities, governments, patient groups, and individuals — are banding together to develop new regulations and guidelines, and generally promote open data in healthcare.

Some of these initiatives focus on improving transparency in clinical trials. Among those pushing for researchers to share more clinical trials data are groups like AllTrials and the Yale Open Data Access (YODA) Project, donor organizations like the Gates Foundation, and biomedical journals like The BMJ. Private healthcare companies, including some that resisted data sharing in the past, are increasingly seeing value in open collaboration as well.

Other initiatives focus on empowering patients to share their own health data. Consumer genomics companies, personal health records providers, disease management apps, online patient communities and other healthcare services give patients greater access to personal health data than ever before. Some also allow consumers to share it with researchers, enroll in clinical trials, or find other ways to leverage it for the benefit of others.

Another group of initiatives seek to improve the quality and availability of public health data, such as that pertaining to epidemiological trends, health financing, and human behavior.

Governments often play a key role in collecting this kind of data, but some are more open and effective than others. “Open government is about more than a mere commitment to share data,” says Peter Speyer, Chief Data and Technology Officer at the Institute for Health Metrics and Evaluation (IHME), a health research center at the University of Washington. “It’s also about supporting a whole ecosystem for using these data and tapping into creativity and resources that are not available within any single organization.”

Open data may be particularly important in managing infectious disease outbreaks and other public health emergencies. Following the recent Ebola crisis, the World Health Organization issued a statement on the need for rapid data sharing in emergency situations. It laid out guidelines that could help save lives when the next pandemic strikes.

But on its own, open data does not lead to healthcare innovation. “Simply making large amounts of data accessible is good for transparency and trust,” says Craig Lipset, Head of Clinical Innovation at Pfizer, “but it does not inherently improve R&D or health research. We still need important collaborations and partnerships that make full use of these vast data stores.”

Many such collaborations and partnerships are already underway. They may help drive a new era of healthcare innovation ..(More)”

Data Collaboratives: Sharing Public Data in Private Hands for Social Good

Curated on September 24, 2015August 3, 2018 by Stefaan Verhulst

Beth Simone Noveck (The GovLab) in Forbes: “Sensor-rich consumer electronics such as mobile phones, wearable devices, commercial cameras and even cars are collecting zettabytes of data about the environment and about us. According to one McKinsey study, the volume of data is growing at fifty percent a year. No one needs convincing that these private storehouses of information represent a goldmine for business, but these data can do double duty as rich social assets—if they are shared wisely.

Think about a couple of recent examples: Sharing data held by businesses and corporations (i.e. public data in private hands) can help to improve policy interventions. California planners make water allocation decisions based upon expertise, data and analytical tools from public and private sources, including Intel, the Earth Research Institute at the University of California at Santa Barbara, and the World Food Center at the University of California at Davis.

In Europe, several phone companies have made anonymized datasets available, making it possible for researchers to track calling and commuting patterns and gain better insight into social problems from unemployment to mental health. In the United States, LinkedIn is providing free data about demand for IT jobs in different markets which, when combined with open data from the Department of Labor, helps communities target efforts around training….

Despite the promise of data sharing, these kind of data collaboratives remain relatively new. There is a need toaccelerate their use by giving companies strong tax incentives for sharing data for public good. There’s a need for more study to identify models for data sharing in ways that respect personal privacy and security and enable companies to do well by doing good. My colleagues at The GovLab together with UN Global Pulse and the University of Leiden, for example, published this initial analysis of terms and conditions used when exchanging data as part of a prize-backed challenge. We also need philanthropy to start putting money into “meta research;” it’s not going to be enough to just open up databases: we need to know if the data is good.

After years of growing disenchantment with closed-door institutions, the push for greater use of data in governing can be seen as both a response and as a mirror to the Big Data revolution in business. Although more than 1,000,000 government datasets about everything from air quality to farmers markets are openly available online in downloadable formats, much of the data about environmental, biometric, epidemiological, and physical conditions rest in private hands. Governing better requires a new empiricism for developing solutions together. That will depend on access to these private, not just public data….(More)”

Why interdisciplinary research matters

Curated on September 23, 2015July 18, 2019 by Stefaan Verhulst

Special issue of Nature: “To solve the grand challenges facing society — energy, water, climate, food, health — scientists and social scientists must work together. But research that transcends conventional academic boundaries is harder to fund, do, review and publish — and those who attempt it struggle for recognition and advancement (see World View, page 291). This special issue examines what governments, funders, journals, universities and academics must do to make interdisciplinary work a joy rather than a curse.

A News Feature on page 308 asks where the modern trend for interdisciplinary research came from — and finds answers in the proliferation of disciplines in the twentieth century, followed by increasingly urgent calls to bridge them. An analysis of publishing data explores which fields and countries are embracing interdisciplinary research the most, and what impact such research has (page 306). Onpage 313, Rick Rylance, head of Research Councils UK and himself a researcher with one foot in literature and one in neuroscience, explains why interdisciplinarity will be the focus of a 2015–16 report from the Global Research Council. Around the world, government funding agencies want to know what it is, whether they should they invest in it, whether they are doing so effectively and, if not, what must change.

How can scientists successfully pursue research outside their comfort zone? Some answers come from Rebekah Brown, director of Monash University’s Monash Sustainability Institute in Melbourne, Australia, and her colleagues. They set out five principles for successful interdisciplinary working that they have distilled from years of encouraging researchers of many stripes to seek sustainability solutions (page 315). Similar ideas help scientists, curators and humanities scholars to work together on a collection that includes clay tablets, papyri, manuscripts and e-mail archives at the John Rylands Research Institute in Manchester, UK, reveals its director, Peter Pormann, on page 318.

Finally, on page 319, Clare Pettitt reassesses the multidisciplinary legacy of Richard Francis Burton — Victorian explorer, ethnographer, linguist and enthusiastic amateur natural scientist who got some things very wrong, but contributed vastly to knowledge of other cultures and continents. Today’s would-be interdisciplinary scientists can draw many lessons from those of the past — and can take our polymathy quiz online at nature.com/inter. (Nature special:Interdisciplinarity)

Addressing Inequality and the ‘Data Divide’

Curated on September 23, 2015August 3, 2018 by Stefaan Verhulst

Daniel Castro at the US Chamber of Commerce Foundation: “In the coming years, communities across the nation will increasingly rely on data to improve quality of life for their residents, such as by improving educational outcomes, reducing healthcare costs, and increasing access to financial services. However, these opportunities require that individuals have access to high-quality data about themselves and their communities. Should certain individuals or communities not routinely have data about them collected, distributed, or used, they may suffer social and economic consequences. Just as the digital divide has held back many communities from reaping the benefits of the modern digital era, a looming “data divide” threatens to stall the benefits of data-driven innovation for a wide swathe of America. Given this risk, policymakers should make a concerted effort to combat data poverty.

Data already plays a crucial role in guiding decision making, and it will only become more important over time. In the private sector, businesses use data for everything from predicting inventory demand to responding to customer feedback to determining where to open new stores. For example, an emerging group of financial service providers use non-traditional data sources, such as an individual’s social network, to assess credit risk and make lending decisions. And health insurers and pharmacies are offering discounts to customers who use fitness trackers to monitor and share data about their health. In the public sector, data is at the heart of important efforts like improving patient safety, cutting government waste, and helping children succeed in school. For example, public health officials in states like Indiana and Maryland have turned to data science in an effort to reduce infant mortality rates.

Many of these exciting advancements are made possible by a new generation of technologies that make it easier to collect, share, and disseminate data. In particular, the Internet of Everything is creating a plethora of always-on devices that record and transmit a wealth of information about our world and the people and objects in it. Individuals are using social media to create a rich tapestry of interactions tied to particular times and places. In addition, government investments in critical data systems, such as statewide databases to track healthcare spending and student performance over time, are integral to efforts to harness data for social good….(More)”

The Data Revolution for Sustainable Development

Curated on September 22, 2015August 15, 2018 by Stefaan Verhulst

Jeffrey D. Sachs at Project Syndicate: “There is growing recognition that the success of the Sustainable Development Goals (SDGs), which will be adopted on September 25 at a special United Nations summit, will depend on the ability of governments, businesses, and civil society to harness data for decision-making…

One way to improve data collection and use for sustainable development is to create an active link between the provision of services and the collection and processing of data for decision-making. Take health-care services. Every day, in remote villages of developing countries, community health workers help patients fight diseases (such as malaria), get to clinics for checkups, receive vital immunizations, obtain diagnoses (through telemedicine), and access emergency aid for their infants and young children (such as for chronic under-nutrition). But the information from such visits is usually not collected, and even if it is put on paper, it is never used again.
We now have a much smarter way to proceed. Community health workers are increasingly supported by smart-phone applications, which they can use to log patient information at each visit. That information can go directly onto public-health dashboards, which health managers can use to spot disease outbreaks, failures in supply chains, or the need to bolster technical staff. Such systems can provide a real-time log of vital events, including births and deaths, and even use so-called verbal autopsies to help identify causes of death. And, as part of electronic medical records, the information can be used at future visits to the doctor or to remind patients of the need for follow-up visits or medical interventions….
Fortunately, the information and communications technology revolution and the spread of broadband coverage nearly everywhere can quickly make such time lags a thing of the past. As indicated in the report A World that Counts: Mobilizing the Data Revolution for Sustainable Development, we must modernize the practices used by statistical offices and other public agencies, while tapping into new sources of data in a thoughtful and creative way that complements traditional approaches.
Through more effective use of smart data – collected during service delivery, economic transactions, and remote sensing – the fight against extreme poverty will be bolstered; the global energy system will be made much more efficient and less polluting; and vital services such as health and education will be made far more effective and accessible.
With this breakthrough in sight, several governments, including that of the United States, as well as businesses and other partners, have announced plans to launch a new “Global Partnership for Sustainable Development Data” at the UN this month. The new partnership aims to strengthen data collection and monitoring efforts by raising more funds, encouraging knowledge-sharing, addressing key barriers to access and use of data, and identifying new big-data strategies to upgrade the world’s statistical systems.
The UN Sustainable Development Solutions Network will support the new Global Partnership by creating a new Thematic Network on Data for Sustainable Development, which will bring together leading data scientists, thinkers, and academics from across multiple sectors and disciplines to form a center of data excellence….(More)”

Using Big Data to Understand the Human Condition: The Kavli HUMAN Project

Curated on September 22, 2015August 3, 2018 by Stefaan Verhulst

Azmak Okan et al in the Journal “Big Data”: “Until now, most large-scale studies of humans have either focused on very specific domains of inquiry or have relied on between-subjects approaches. While these previous studies have been invaluable for revealing important biological factors in cardiac health or social factors in retirement choices, no single repository contains anything like a complete record of the health, education, genetics, environmental, and lifestyle profiles of a large group of individuals at the within-subject level. This seems critical today because emerging evidence about the dynamic interplay between biology, behavior, and the environment point to a pressing need for just the kind of large-scale, long-term synoptic dataset that does not yet exist at the within-subject level. At the same time that the need for such a dataset is becoming clear, there is also growing evidence that just such a synoptic dataset may now be obtainable—at least at moderate scale—using contemporary big data approaches. To this end, we introduce the Kavli HUMAN Project (KHP), an effort to aggregate data from 2,500 New York City households in all five boroughs (roughly 10,000 individuals) whose biology and behavior will be measured using an unprecedented array of modalities over 20 years. It will also richly measure environmental conditions and events that KHP members experience using a geographic information system database of unparalleled scale, currently under construction in New York. In this manner, KHP will offer both synoptic and granular views of how human health and behavior coevolve over the life cycle and why they evolve differently for different people. In turn, we argue that this will allow for new discovery-based scientific approaches, rooted in big data analytics, to improving the health and quality of human life, particularly in urban contexts….(More)”

Open data is not just for startups

Curated on September 21, 2015August 3, 2018 by Stefaan Verhulst

Mike Altendorf at CIO: “…Surely open data is just for start-ups, market research companies and people that want to save the world? Well there are two reasons why I wanted to dedicate a bit of time to the subject of open data. First, one of the major barriers to internal innovation that I hear about all the time is the inability to use internal data to inform that innovation. This is usually because data is deemed too sensitive, too complex, too siloed or too difficult to make usable. Leaving aside the issues that any of those problems are going to cause for the organisation more generally, it is easy to see how this can create a problem. So why not use someone else’s data?

The point of creating internal labs and innovation centres is to explore the art of the possible. I quite agree that insight from your own data is a good place to start but it isn’t the only place. You could also argue that by using your own data you are restricting your thinking because you are only looking at information that already relates to your business. If the point of a lab is to explore ideas for supporting the business then you may be better off looking outwards at what is happening in the world around you rather than inwards into the constrained world of the industry you already inhabit….

The fact is there is vast amounts of data sets that are freely available that can be made to work for you if you can just apply the creativity and technical smarts to them.

My second point is less about open data than about opening up data. Organisations collect information on their business operations, customers and suppliers all the time. The smart ones know how to use it to build competitive advantage but the really smart ones also know that there is significant extra value to be gained from sharing that data with the customer or supplier that it relates to. The customer or supplier can then use it to make informed decisions themselves. Some organisations have been doing this for a while. Customers of First Direct have been able to analyse their own spending patterns for years (although the data has been somewhat limited). The benefit to the customer is that they can make informed decisions based on actual data about their past behaviours and so adapt their spending habits accordingly (or put their head firmly in the sand and carry on as before in my case!). The benefit to the bank is that they are able to suggest ideas for how to improve a customer’s financial health alongside the data. Others have looked at how they can help customers by sharing (anonymised) information about what people with similar lifestyles/needs are doing/buying so customers can learn from each other. Trials have shown that customers welcomed the insight….(More)”

Making Open Innovation Ecosystems Work: Case Studies in Healthcare

Curated on September 16, 2015August 3, 2018 by Stefaan Verhulst

New paper by Donald E. Wynn, Jr., Renee M. E. Pratt and Randy V. Bradley for the Business of Government Center: “In the mist of tightening budgets, many government agencies are being asked to deliver innovative solutions to operational and strategic problems. One way to address this dilemma is to participate in open innovation. This report addresses two key components of open innovation:

Adopting external ideas from private firms, universities, and individuals into the agency’s innovation practices
Pushing innovations developed internally to the public by reaching out to external channels

To illustrate how open innovation can work, the authors employ the concept of the technological ecosystem to demonstrate that fostering innovations cannot be done alone.

Successful technological ecosystems create innovation through the combination of five key elements:

Resources – the contribution made and exchanged among the participants of an ecosystem
Participants – the characteristics of the participants
Relationships – the relationships and interaction among the participants
Organization –of the ecosystem as a whole
External environment in which the ecosystem operates

This report examines both strategies by studying two cases of government-sponsored participation in technological ecosystems in the health care industry:

The U.S. Department of Veterans Affairs (VA) built a new ecosystem around its VistA electronic health records software in order to better facilitate the flow of innovation practices and processes between the VA and external agencies and private firms.
The state of West Virginia selected a variant of the VistA software for deployment in its hospital system, saving a significant amount of money while introducing a number of new features and functionality for the seven medical facilities.

As a result of these studies, the authors have identified 10 best practices for agencies seeking to capitalize on open innovation. These best practices include encouraging openness and transparency, minimizing internal friction and bureaucracy, and continuously monitoring external conditions….(More)”

White House Announces New Steps to Improve Federal Programs by Leveraging Research Insights

Curated on September 16, 2015August 15, 2018 by Stefaan Verhulst

Factsheet: “Today the White House will announce new actions to improve the effectiveness and efficiency of Federal programs by leveraging research insights about how people participate in, engage with, and respond to programs. Announcements include: an Executive Order, new guidance to Federal agencies to make government forms simpler and easier, and a report from the Social and Behavioral Sciences Team.

The report features the Social and Behavioral Sciences Team’s first year of projects, which have made government programs easier to access and more user-friendly, and have boosted program efficiency and integrity. As a result of these projects, more Servicemembers are saving for retirement, more students are going to college, more Veterans are accessing their benefits, more farmers are obtaining credit, and more families are gaining healthcare coverage.

The Federal Government administers a wide array of programs on behalf of the American people, such as financial aid to assist with college access and workplace savings plans to promote retirement security. Americans are best served when these programs are easy to access and when program choices and information are presented clearly. When programs are designed without these considerations in mind, Americans can incur real consequences. One behavioral science study found, for example, that a complex application process for college financial aid not only decreased applications for aid, but also led some students to delay or forgo going to college altogether.

Behavioral science insights—research insights about how people make decisions—not only identify aspects of programs that can act as barriers to engagement, but also provide policymakers with insight into how those barriers can be removed through commonsense steps, such as simplifying communications and making choices more clear. That same study on financial aid found that streamlining the process of applying—by providing families with assistance and enabling families to automatically fill parts of the application using information from their tax return—increased the rates of both aid applications and college enrollment.

When these insights are used to improve government, the returns can be significant. For instance, the Federal Government applied behavioral science insights to simplify the process of applying for Federal student aid and has made college more accessible to millions of American families. Similarly, the Pension Protection Act of 2006, which codified the practice of automatically enrolling workers into retirement savings plans, is based on behavioral economics research showing that switching from an opt-in to an opt-out enrollment system dramatically increases participation rates. Since the implementation of this policy, automatic enrollment and automatic escalation have led to billions of dollars in additional savings by Americans.

More Details on Today’s Announcements

Today, President Obama signed an Executive Order that directs Federal agencies to use behavioral science insights to better serve the American people. The Executive Order directs Federal agencies to identify programs in which applying behavioral science insights can yield substantial improvements; develop strategies for applying behavioral science insights to programs, and, where possible, for rigorously testing and evaluating the impact of these insights; recruit behavioral science experts to join the Federal Government; and strengthen agency relationships with the research community.

The Executive Order directs Federal agencies to take action in four areas in which prior research and practice indicate that behavioral science insights can play an especially strong role in program outcomes:

Streamlining access to programs: Agencies should look for opportunities to help qualifying individuals, families, and businesses access programs and benefits by streamlining processes that may otherwise limit participation.
Improving the presentation of information: Agencies should look for opportunities to improve how the government presents information to consumers, borrowers, and program beneficiaries by giving greater consideration to ways in which information format, timing, and medium can affect understanding.
Structuring choices carefully: Where programs and policies offer choices, agencies should carefully consider how the presentation and structure of those choices, including default settings and the number and arrangement of options, can empower participants to make the best choices for themselves and their families.
Considering a full range of incentives: Where policies create incentives to take specific actions, such as saving for retirement, agencies should consider how the frequency, presentation, and labeling of benefits, tax credits, and other incentives can more effectively and efficiently promote those actions, with a specific focus on opportunities to use nonfinancial incentives.

The Executive Order also formally establishes the Social and Behavioral Sciences Team (SBST), a group of experts in applied behavioral science that translates findings and methods from the social and behavioral sciences into improvements in Federal policies and programs for the benefit of the American people. The SBST is chaired by the White House Office of Science and Technology Policy (OSTP) and represents a dozen member agencies across the Federal Government, as well as offices within the Executive Office of the President. SBST also receives critical support from the General Services Administration. The Executive Order charges SBST with providing advice and policy guidance to Federal agencies in support of the order….(More)”