Facebook could be forced to share data on effects to the young

Curated on Posted on by Stefaan Verhulst

Nicola Davis at The Guardian: “Social media companies such as Facebook and Twitter could be required by law to share data with researchers to help examine potential harms to young people’s health and identify who may be at risk.

Surveys and studies have previously suggested a link between the use of devices and networking sites and an increase in problems among teenagers and younger children ranging from poor sleep to bullying, mental health issues and grooming.

However, high quality research in the area is scarce: among the conundrums that need to be looked at are matters of cause and effect, the size of any impacts, and the importance of the content of material accessed online.

According to a report by the Commons science and technology committee on the effects of social media and screen time among young people, companies should be compelled to protect users and legislation was needed to enable access to data for high quality studies to be carried out.

The committee noted that the government had failed to commission such research and had instead relied on requesting reviews of existing studies. This was despite a 2017 green paper that set out a consultation process on aUK internet safety strategy.

“We understand [social media companies’] eagerness to protect the privacy of users but sharing data with bona fide researchers is the only way society can truly start to understand the impact, both positive and negative, that social media is having on the modern world,” said Norman Lamb, the Liberal Democrat MP who chairs the committee. “During our inquiry, we heard that social media companies had openly refused to share data with researchers who are keen to examine patterns of use and their effects. This is not good enough.”

Prof Andrew Przybylski, the director of research at the Oxford Internet Institute, said the issue of good quality research was vital, adding that many people’s perception of the effect of social media is largely rooted in hype.

“Social media companies must participate in open, robust, and transparent science with independent scientists,” he said. “Their data, which we give them, is both their most valuable resource and it is the only means by which we can effectively study how these platforms affect users.”…(More)”

Not so gameful: A critical review of gamification in mobile energy applications

Curated on Posted on by Stefaan Verhulst

Paper by Ariane L.Beck et al in Energy Research & Social Sciences: “In order to help mitigate climate change and reduce the health-related consequences of air pollution, consumers need to be empowered to make better and more effective decisions regarding energy use. Utilities, government, and commercial entities offer numerous programs and consumer products to help individuals set or reach goals related to energy use.

Many of these interventions and products have related apps that use gamification in some capacity in order to improve the user experience, offer motivation, and encourage behavior change. We identified 57 apps from nearly 2400 screened apps that both target direct energy use and employ at least one element of gamification.

We evaluated these apps with specific focus on gamification components, game elements, and behavioral constructs. Our analysis shows that the average energy related app heavily underutilizes search engine optimization, gamification components, and game design elements, as well as the behavioral constructs known to impact energy-related decision-making and behavior. Our findings offer several insights for the design of more effective energy apps….(More)”.

“Giving something back”: A systematic review and ethical enquiry into public views on the use of patient data for research in the United Kingdom and the Republic of Ireland

Curated on Posted on by Stefaan Verhulst

Paper by Jessica Stockdale, Jackie Cassell and Elizabeth Ford: “The use of patients’ medical data for secondary purposes such as health research, audit, and service planning is well established in the UK, and technological innovation in analytical methods for new discoveries using these data resources is developing quickly. Data scientists have developed, and are improving, many ways to extract and process information in medical records. This continues to lead to an exciting range of health related discoveries, improving population health and saving lives. Nevertheless, as the development of analytic technologies accelerates, the decision-making and governance environment as well as public views and understanding about this work, has been lagging behind1.

Public opinion and data use

A range of small studies canvassing patient views, mainly in the USA, have found an overall positive orientation to the use of patient data for societal benefit2–7. However, recent case studies, like NHS England’s ill-fated Care.data scheme, indicate that certain schemes for secondary data use can prove unpopular in the UK. Launched in 2013, Care.data aimed to extract and upload the whole population’s general practice patient records to a central database for prevalence studies and service planning8. Despite the stated intention of Care.data to “make major advances in quality and patient safety”8, this programme was met with a widely reported public outcry leading to its suspension and eventual closure in 2016. Several factors may have been involved in this failure, from the poor public communication about the project, lack of social licence9, or as pressure group MedConfidential suggests, dislike of selling data to profit-making companies10. However, beyond these specific explanations for the project’s failure, what ignited public controversy was a concern with the impact that its aim to collect and share data on a large scale might have on patient privacy. The case of Care.data indicates a reluctance on behalf of the public to share their patient data, and it is still not wholly clear whether the public are willing to accept future attempts at extracting and linking large datasets of medical information. The picture of mixed opinion makes taking an evidence-based position, drawing on social consensus, difficult for legislators, regulators, and data custodians who may respond to personal or media generated perceptions of public views. However, despite differing results of studies canvassing public views, we hypothesise that there may be underlying ethical principles that could be extracted from the literature on public views, which may provide guidance to policy-makers for future data-sharing….(More)”.

Can I Trust the Data I See? A Physician’s Concern on Medical Data in IoT Health Architectures

Curated on Posted on by Stefaan Verhulst

Conference Paper by Fariha Tasmin Jaigirdar, Carsten Rudolph, and Chris Bain: “With the increasing advancement of Internet of Things (IoT) enabled systems, smart medical devices open numerous opportunities for the healthcare sector. The success of using such devices in the healthcare industry depends strongly on secured and reliable medical data transmission. Physicians diagnose that data and prescribe medicines and/or give guidelines/instructions/treatment plans for the patients. Therefore, a physician is always concerned about the medical data trustworthiness, because if it is not guaranteed, a savior can become an involuntary foe! This paper analyses two different scenarios to understand the real-life consequences in IoT-based healthcare (IoT-Health) application. Appropriate sequence diagrams for both scenarios show data movement as a basis for determining necessary security requirements in each layer of IoT-Health.

We analyse the individual entities of the overall system and develop a system-wide view of trust in IoT-Health. The security analysis pinpoints the research gap in end-to-end trust and indicates the necessity to treat the whole IoT-Health system as an integrated entity. This study highlights the importance of integrated cross-layer security solutions that can deal with the heterogeneous security architectures of IoT healthcare system and finally identifies a possible solution for the open question raised in the security analysis with appropriate future research directions….(More)”.

All of Us Research Program Expands Data Collection Efforts with Fitbit

Curated on Posted on by Stefaan Verhulst

NIH Press Release: “The All of Us Research Program has launched the Fitbit Bring-Your-Own-Device (BYOD) project. Now, in addition to providing health information through surveys, electronic health records, and biosamples, participants can choose to share data from their Fitbit accounts to help researchers make discoveries. The project is a key step for the program in integrating digital health technologies for data collection.

Digital health technologies, like mobile apps and wearable devices, can gather data outside of a hospital or clinic. This data includes information about physical activity, sleep, weight, heart rate, nutrition, and water intake, which can give researchers a more complete picture of participants’ health. The All of Us Research Program is now gathering this data in addition to surveys, electronic health record information, physical measurements, and blood and urine samples, working to make the All of Us resource one of the largest and most diverse data sets of its kind for health research.

“Collecting real-world, real-time data through digital technologies will become a fundamental part of the program,” said Eric Dishman, director of the All of Us Research Program. “This information, in combination with many other data types, will give us an unprecedented ability to better understand the impact of lifestyle and environment on health outcomes and, ultimately, develop better strategies for keeping people healthy in a very precise, individualized way.”…

All of Us is developing additional plans to incorporate digital health technologies. A second project with Fitbit is expected to launch later in the year. It will include providing devices to a limited number of All of Us participants who will be randomly invited to take part, to enable them to share wearable data with the program. And All of Us will add connections to other devices and apps in the future to further expand data collection efforts and engage participants in new ways….(More)”.

The Internet of Bodies: A Convenient—and, Yes, Creepy—New Platform for Data Discovery

Curated on Posted on by Stefaan Verhulst

David Horrigan at ALM: “In the Era of the Internet of Things, we’ve become (at least somewhat) comfortable with our refrigerators knowing more about us than we know about ourselves and our Apple watches transmitting our every movement. The Internet of Things has even made it into the courtroom in cases such as the hot tub saga of Amazon Echo’s Alexa in State v. Bates and an unfortunate wife’s Fitbit in State v. Dabate.

But the Internet of Bodies?…

The Internet of Bodies refers to the legal and policy implications of using the human body as a technology platform,” said Northeastern University law professor Andrea Matwyshyn, who works also as co-director of Northeastern’s Center for Law, Innovation, and Creativity (CLIC).

“In brief, the Internet of Things (IoT) is moving onto and inside the human body, becoming the Internet of Bodies (IoB),” Matwyshyn added….


The Internet of Bodies is not merely a theoretical discussion of what might happen in the future. It’s happening already.

Former U.S. Vice President Dick Cheney revealed in 2013 that his physicians ordered the wireless capabilities of his heart implant disabled out of concern for potential assassin hackers, and in 2017, the U.S. Food and Drug Administration recalled almost half a million pacemakers over security issues requiring a firmware update.

It’s not just former vice presidents and heart patients becoming part of the Internet of Bodies. Northeastern’s Matwyshyn notes that so-called “smart pills” with sensors can report back health data from your stomach to smartphones, and a self-tuning brain implant is being tested to treat Alzheimer’s and Parkinson’s.

So, what’s not to like?

Better with Bacon?

“We are attaching everything to the Internet whether we need to or not,” Matwyshyn said, calling it the “Better with Bacon” problem, noting that—as bacon has become a popular condiment in restaurants—chefs are putting it on everything from drinks to cupcakes.

“It’s great if you love bacon, but not if you’re a vegetarian or if you just don’t like bacon. It’s not a bonus,” Matwyshyn added.

Matwyshyn’s bacon analogy raises interesting questions: Do we really need to connect everything to the Internet? Do the data privacy and data protection risks outweigh the benefits?

The Northeastern Law professor divides these IoB devices into three generations: 1) “body external” devices, such as Fitbits and Apple watches, 2) “body internal” devices, including Internet-connected pacemakers, cochlear implants, and digital pills, and 3) “body embedded” devices, hardwired technology where the human brain and external devices meld, where a human body has a real time connection to a remote machine with live updates.

Chip Party for Chipped Employees

A Wisconsin company, Three Square Market, made headlines in 2017—including an appearance on The Today Show—when the company microchipped its employees, not unlike what veterinarians do with the family pet. Not surprisingly, the company touted the benefits of implanting microchips under the skin of employees, including being able to wave one’s hand at a door instead of having to carry a badge or use a password….(More)”.

High-performance medicine: the convergence of human and artificial intelligence

Curated on Posted on by Stefaan Verhulst

Eric Topol in Nature: “The use of artificial intelligence, and the deep-learning subtype in particular, has been enabled by the use of labeled big data, along with markedly enhanced computing power and cloud storage, across all sectors. In medicine, this is beginning to have an impact at three levels: for clinicians, predominantly via rapid, accurate image interpretation; for health systems, by improving workflow and the potential for reducing medical errors; and for patients, by enabling them to process their own data to promote health. The current limitations, including bias, privacy and security, and lack of transparency, along with the future directions of these applications will be discussed in this article. Over time, marked improvements in accuracy, productivity, and workflow will likely be actualized, but whether that will be used to improve the patient–doctor relationship or facilitate its erosion remains to be seen….(More)”.

Index: Open Data

Curated on Posted on by Andrew Young

By Alexandra Shaw, Michelle Winowatan, Andrew Young, and Stefaan Verhulst

The Living Library Index – inspired by the Harper’s Index – provides important statistics and highlights global trends in governance innovation. This installment focuses on open data and was originally published in 2018.

Value and Impact

  • The projected year at which all 28+ EU member countries will have a fully operating open data portal: 2020

  • Between 2016 and 2020, the market size of open data in Europe is expected to increase by 36.9%, and reach this value by 2020: EUR 75.7 billion

Public Views on and Use of Open Government Data

  • Number of Americans who do not trust the federal government or social media sites to protect their data: Approximately 50%

  • Key findings from The Economist Intelligence Unit report on Open Government Data Demand:

    • Percentage of respondents who say the key reason why governments open up their data is to create greater trust between the government and citizens: 70%

    • Percentage of respondents who say OGD plays an important role in improving lives of citizens: 78%

    • Percentage of respondents who say OGD helps with daily decision making especially for transportation, education, environment: 53%

    • Percentage of respondents who cite lack of awareness about OGD and its potential use and benefits as the greatest barrier to usage: 50%

    • Percentage of respondents who say they lack access to usable and relevant data: 31%

    • Percentage of respondents who think they don’t have sufficient technical skills to use open government data: 25%

    • Percentage of respondents who feel the number of OGD apps available is insufficient, indicating an opportunity for app developers: 20%

    • Percentage of respondents who say OGD has the potential to generate economic value and new business opportunity: 61%

    • Percentage of respondents who say they don’t trust governments to keep data safe, protected, and anonymized: 19%

Efforts and Involvement

  • Time that’s passed since open government advocates convened to create a set of principles for open government data – the instance that started the open data government movement: 10 years

  • Countries participating in the Open Government Partnership today: 79 OGP participating countries and 20 subnational governments

  • Percentage of “open data readiness” in Europe according to European Data Portal: 72%

    • Open data readiness consists of four indicators which are presence of policy, national coordination, licensing norms, and use of data.

  • Number of U.S. cities with Open Data portals: 27

  • Number of governments who have adopted the International Open Data Charter: 62

  • Number of non-state organizations endorsing the International Open Data Charter: 57

  • Number of countries analyzed by the Open Data Index: 94

  • Number of Latin American countries that do not have open data portals as of 2017: 4 total – Belize, Guatemala, Honduras and Nicaragua

  • Number of cities participating in the Open Data Census: 39

Demand for Open Data

  • Open data demand measured by frequency of open government data use according to The Economist Intelligence Unit report:

    • Australia

      • Monthly: 15% of respondents

      • Quarterly: 22% of respondents

      • Annually: 10% of respondents

    • Finland

      • Monthly: 28% of respondents

      • Quarterly: 18% of respondents

      • Annually: 20% of respondents

    •  France

      • Monthly: 27% of respondents

      • Quarterly: 17% of respondents

      • Annually: 19% of respondents

        •  

    • India

      • Monthly: 29% of respondents

      • Quarterly: 20% of respondents

      • Annually: 10% of respondents

    • Singapore

      • Monthly: 28% of respondents

      • Quarterly: 15% of respondents

      • Annually: 17% of respondents 

    • UK

      • Monthly: 23% of respondents

      • Quarterly: 21% of respondents

      • Annually: 15% of respondents

    • US

      • Monthly: 16% of respondents

      • Quarterly: 15% of respondents

      • Annually: 20% of respondents

  • Number of FOIA requests received in the US for fiscal year 2017: 818,271

  • Number of FOIA request processed in the US for fiscal year 2017: 823,222

  • Distribution of FOIA requests in 2017 among top 5 agencies with highest number of request:

    • DHS: 45%

    • DOJ: 10%

    • NARA: 7%

    • DOD: 7%

    • HHS: 4%

Examining Datasets

  • Country with highest index score according to ODB Leaders Edition: Canada (76 out of 100)

  • Country with lowest index score according to ODB Leaders Edition: Sierra Leone (22 out of 100)

  • Number of datasets open in the top 30 governments according to ODB Leaders Edition: Fewer than 1 in 5

  • Average percentage of datasets that are open in the top 30 open data governments according to ODB Leaders Edition: 19%

  • Average percentage of datasets that are open in the top 30 open data governments according to ODB Leaders Edition by sector/subject:

    • Budget: 30%

    • Companies: 13%

    • Contracts: 27%

    • Crime: 17%

    • Education: 13%

    • Elections: 17%

    • Environment: 20%

    • Health: 17%

    • Land: 7%

    • Legislation: 13%

    • Maps: 20%

    • Spending: 13%

    • Statistics: 27%

    • Trade: 23%

    • Transport: 30%

  • Percentage of countries that release data on government spending according to ODB Leaders Edition: 13%

  • Percentage of government data that is updated at regular intervals according to ODB Leaders Edition: 74%

  • Number of datasets available through:

  • Number of datasets classed as “open” in 94 places worldwide analyzed by the Open Data Index: 11%

  • Percentage of open datasets in the Caribbean, according to Open Data Census: 7%

  • Number of companies whose data is available through OpenCorporates: 158,589,950

City Open Data

  • New York City

  • Singapore

    • Number of datasets published in Singapore: 1,480

    • Percentage of datasets with standardized format: 35%

    • Percentage of datasets made as raw as possible: 25%

  • Barcelona

    • Number of datasets published in Barcelona: 443

    • Open data demand in Barcelona measured by:

      • Number of unique sessions in the month of September 2018: 5,401

    • Quality of datasets published in Barcelona according to Tim Berners Lee 5-star Open Data: 3 stars

  • London

    • Number of datasets published in London: 762

    • Number of data requests since October 2014: 325

  • Bandung

    • Number of datasets published in Bandung: 1,417

  • Buenos Aires

    • Number of datasets published in Buenos Aires: 216

  • Dubai

    • Number of datasets published in Dubai: 267

  • Melbourne

    • Number of datasets published in Melbourne: 199

Sources

  • About OGP, Open Government Partnership. 2018.  

Google Searches Could Predict Heroin Overdoses

Curated on Posted on by Stefaan Verhulst

Rod McCullom at Scientific American: “About 115 people nationwide die every day from opioid overdoses, according to the U.S. Centers for Disease Control and Prevention. A lack of timely, granular data exacerbates the crisis; one study showed opioid deaths were undercounted by as many as 70,000 between 1999 and 2015, making it difficult for governments to respond. But now Internet searches have emerged as a data source to predict overdose clusters in cities or even specific neighborhoods—information that could aid local interventions that save lives. 

The working hypothesis was that some people searching for information on heroin and other opioids might overdose in the near future. To test this, a researcher at the University of California Institute for Prediction Technology (UCIPT) and his colleagues developed several statistical models to forecast overdoses based on opioid-related keywords, metropolitan income inequality and total number of emergency room visits. They discovered regional differences (graphic) in where and how people searched for such information and found that more overdoses were associated with a greater number of searches per keyword. The best-fitting model, the researchers say, explained about 72 percent of the relation between the most popular search terms and heroin-related E.R. visits. The authors say their study, published in the September issue of Drug and Alcohol Dependence, is the first report of using Google searches in this way. 

To develop their models, the researchers obtained search data for 12 prescription and nonprescription opioids between 2005 and 2011 in nine U.S. metropolitan areas. They compared these with Substance Abuse and Mental Health Services Administration records of heroin-related E.R. admissions during the same period. The models can be modified to predict overdoses of other opioids or narrow searches to specific zip codes, says lead study author Sean D. Young, a behavioral psychologist and UCIPT executive director. That could provide early warnings of overdose clusters and help to decide where to distribute the overdose reversal medication Naloxone….(More)”.

Seven design principles for using blockchain for social impact

Curated on Posted on by Stefaan Verhulst

Stefaan Verhulst at Apolitical: “2018 will probably be remembered as the bust of the blockchain hype. Yet even as crypto currencies continue to sink in value and popular interest, the potential of using blockchain technologies to achieve social ends remains important to consider but poorly understood.

In 2019, business will continue to explore blockchain for sectors as disparate as finance, agriculture, logistics and healthcare. Policymakers and social innovators should also leverage 2019 to become more sophisticated about blockchain’s real promise, limitations  and current practice.

In a recent report I prepared with Andrew Young, with the support of the Rockefeller Foundation, we looked at the potential risks and challenges of using blockchain for social change — or “Blockchan.ge.” A number of implementations and platforms are already demonstrating potential social impact.

The technology is now being used to address issues as varied as homelessness in New York City, the Rohingya crisis in Myanmar and government corruption around the world.

In an illustration of the breadth of current experimentation, Stanford’s Center for Social Innovation recently analysed and mapped nearly 200 organisations and projects trying to create positive social change using blockchain. Likewise, the GovLab is developing a mapping of blockchange implementations across regions and topic areas; it currently contains 60 entries.

All these examples provide impressive — and hopeful — proof of concept. Yet despite the very clear potential of blockchain, there has been little systematic analysis. For what types of social impact is it best suited? Under what conditions is it most likely to lead to real social change? What challenges does blockchain face, what risks does it pose and how should these be confronted and mitigated?

These are just some of the questions our report, which builds its analysis on 10 case studies assembled through original research, seeks to address.

While the report is focused on identity management, it contains a number of lessons and insights that are applicable more generally to the subject of blockchange.

In particular, it contains seven design principles that can guide individuals or organisations considering the use of blockchain for social impact. We call these the Genesis principles, and they are outlined at the end of this article…(More)”.