Open data could save the NHS hundreds of millions, says top UK scientist


The Guardian: “The UK government must open up and highlight the power of more basic data sets to improve patient care in the NHS and save hundreds of millions of pounds a year, Nigel Shadbolt, chairman of the Open Data Institute (ODI) has urged.

The UK government topped the first league table for open data (paywall)produced by the ODI last year but Shadbolt warns that ministers’ open data responsibilities have not yet been satisfied.

Basic data on prescription administration is now published on a monthly basis but Shadbolt said medical practitioners must be educated about the power of this data to change prescribing habits across the country.

Other data sets, such as trusts’ opening times, consultant lists and details of services, that are promised to make the NHS more accessible are not currently available in a form that is machine-readable.

“These basic sets of information about the processes, the people and places in the health system are all fragmented and fractured and many of them are not available as registers that you can go to,” Shadbolt said.

“Whenever you talk about health data people think you must be talking about personal data and patient data and there are issues, obviously, of absolutely protecting privacy there. But there’s lots of data in the health service that is not about personal patient data at all that would be hugely useful to just have available as machine-readable data for apps to use.”

The UK government has led the way in recent years in encouraging transparency and accountability within the NHS by opening league tables. The publication of league tables on MRSA was followed by a 76-79% drop in infections.

Shadbolt said: “Those hospitals that were worst in their league table don’t like to be there and there was a very rapid diffusion of understanding of best practice across them that you can quantify. It’s many millions of pounds being saved.”

The artificial intelligence and open data expert said the next big area for open data improvement in the NHS is around prescriptions.

Shadbolt pointed to the publication of data about the prescription of statins,which has helped identify savings worth hundreds of millions of pounds: “There is little doubt that this pattern is likely to exist across the whole of the prescribing space.”…(More)”

Aligning Supply and Demand for Better Governance


Findings regarding Open Data in the Open Government Partnership: “Many have predicted that open government data will lead to major gains in political accountability, generate economic value, and improve the quality of government services. Yet, there is a growing consensus among practitioners and experts that, for open data reforms to have strong governance, economic, and social impacts, reforms must do more than make data available and reusable. Government reforms ultimately must aim to provide data that is useful and used. There may be a high opportunity cost to investing in open data in the place of other useful governance reforms….

This paper identifies strong performances and gaps in aligning open data supply and demand. Findings from action plans and IRM reporting reveal the following trends:

  • OGP countries are making more open data commitments in their national action plans, both in absolute numbers and in percentage. This could be good for open data advocates, but may come at the expense of other open government approaches that may be more effective at countering excessive secrecy and corruption.
  • Open data commitments emphasize government supply of data and government coordination mechanisms over identifying and stimulating public demand for data.
  • Among a smaller group of countries, a growing number of commitments aim to align supply and demand by reforming the regulatory framework and by setting up mechanisms to ensure greater demand, such as participatory prioritization processes in which government solicits public input on which data sets to release. However, typical OGP action plans do not show a distinct move toward establishing or implementing the right to request data.
  • There is some evidence that sector-specific approaches to open data see higher rates of implementation than crosscutting and whole-of-government approaches to open data. Commitments emphasize data on budgets, health, natural resources, and aid…. (More)”

Want better science? Quit hoarding data, genetics researchers say


Nidhi Subbaraman at BetaBoston: “When Andrea Downing was 25, she got screened for the BRCA genes known to be associated with a variety of cancers, including breast cancer. Both her great-grandmother and grandmother had been diagnosed with the disease, so the results were no surprise: Downing carried the BRCA1 mutation in her genes. She learned there was a 87 percent chance she would get breast cancer during her lifetime, and 60 percent chance she would get ovarian cancer.
The revelation brought with it a dizzying range of choices. Should she get a mastectomy before the cancer showed? Should she choose to have her ovaries removed? Could she wait until after she had kids?

For the first several years after her diagnosis, Downing sought out support groups, then began booking appointments with researchers and examining the latest literature. “I’m a little different from your usual patient who tested positive,” Downing said. “I wanted to go beyond to challenge myself and understand the science of cancer.”

Then, in 2013, she chanced on was ClinVar, a research database funded by the National Institute of Health that acts as a kind of Wikipedia to catalogue scientific research on mutations in genes. It gave her a roadmap for the research associated with her variant, called C16G.

Downing typed in the letters and numbers of her mutation, and the website spit out a list of companies and labs that have studied her variant. Though much of that information was technical, she said, “the things I do understand about it are very empowering. It’s a starting point to answering questions I don’t know.”

When the database first launched, the idea was that the single repository would present a unified picture of a variant, drawing from all available research that was publicly shared by companies and research labs.

Two years later, the team behind the operation has published a progress report of sorts in the New England Journal of Medicine. They argue that this shared approach is working — doctors and researchers are using the database — and they are advocating for more companies and groups to join the effort to reach a more comprehensive understanding of the variants in disease genes. In particular, they’re challenging companies to be more open with their data, instead of keeping it to themselves….(More)”

Navigating the Health Data Ecosystem


New book on O’Reilly Media on “The “Six C’s”: Understanding the Health Data Terrain in the Era of Precision Medicine”: “Data-driven technologies are now being adopted, developed, funded, and deployed throughout the health care market at an unprecedented scale. But, as this O’Reilly report reveals, health care innovation contains more hurdles and requires more finesse than many tech startups expect. By paying attention to the lessons from the report’s findings, innovation teams can better anticipate what they’ll face, and plan accordingly.

Simply put, teams looking to apply collective intelligence and “big data” platforms to health and health care problems often don’t appreciate the messy details of using and making sense of data in the heavily regulated hospital IT environment. Download this report today and learn how it helps prepare startups in six areas:

  1. Complexity: An enormous domain with noisy data not designed for machine consumption
  2. Computing: Lack of standard, interoperable schema for documenting human health in a digital format
  3. Context: Lack of critical contextual metadata for interpreting health data
  4. Culture: Startup difficulties in hospital ecosystems: why innovation can be a two-edged sword
  5. Contracts: Navigating the IRB, HIPAA, and EULA frameworks
  6. Commerce: The problem of how digital health startups get paid

This report represents the initial findings of a study funded by a grant from the Robert Wood Johnson Foundation. Subsequent reports will explore the results of three deep-dive projects the team pursued during the study. (More)”

Shifting from research governance to research ethics: A novel paradigm for ethical review in community-based research


Paper by Jay Marlowe and Martin Tolich: “This study examines a significant gap in the role of providing ethical guidance and support for community-based research. University and health-based ethical review committees in New Zealand predominantly serve as ‘gatekeepers’ that consider the ethical implications of a research design in order to protect participants and the institution from harm. However, in New Zealand, community-based researchers routinely do not have access to this level of support or review. A relatively new group, the New Zealand Ethics Committee (NZEC), formed in 2012, responds to the uneven landscape of access for community-based research. By offering ethical approval inclusive of the review of a project’s study design outside institutional settings, NZEC has endeavoured to move beyond a gatekeeping research governance function to that of bridge-building. This change of focus presents rich possibilities but also a number of limitations for providing ethical review outside conventional institutional contexts. This paper reports on the NZEC’s experience of working with community researchers to ascertain the possibilities and tensions of shifting ethics review processes from research governance to a focus on research ethics in community-based participatory research….(More)”

Contest Aims to Harness Low-Cost Devices to Help the Poor


Steve Lohr in the New York Times: “The timing and technology are right to bring the power of digital sensing to the poor to improve health, safety and education.

That is the animating assumption behind a new project announced on Tuesday. The initiative is led by Unicef and ARM, the British chip designer whose microprocessors power most smartphones and tablets. They are being joined by Frog, the San Francisco-based product strategy and design firm, along with people described as coaches and advisers from companies and organizations including Google, Orange, Singularity University, the Red Cross and the Senseable City Lab at the Massachusetts Institute of Technology.

The long-term ambition is to jump-start an industrial ecosystem for sensing and data technology that serves the needs of mothers and children in developing nations.

The project, called Wearables for Good, is beginning with a contest to generate ideas. Applications can be submitted online on the project’s website until August 4. Two winners will be selected in the fall. Each will receive $15,000, and assistance and advice from ARM, Frog and others on translating their ideas into a product and perhaps a company.

The online application lists the required characteristics for device ideas. They should be, according to the form, “cost-effective, rugged and durable, low-power and scalable.” The form offers no price limits, but it is safe to assume the project is looking for devices priced far less than an Apple Watch or a Fitbit device.

…. the Wearables for Good project goes further, focusing less on aggregated data and more on personal monitoring. “This is the next level of what we’re doing,” said Erica Kochi, co-founder of Unicef Innovation, which pursues technology initiatives that advance the agency’s goals….(More)”

Selected Readings on Data Governance


Jos Berens (Centre for Innovation, Leiden University) and Stefaan G. Verhulst (GovLab)

The Living Library’s Selected Readings series seeks to build a knowledge base on innovative approaches for improving the effectiveness and legitimacy of governance. This curated and annotated collection of recommended works on the topic of data governance was originally published in 2015.

Context
The field of Data Collaboratives is premised on the idea that sharing and opening-up private sector datasets has great – and yet untapped – potential for promoting social good. At the same time, the potential of data collaboratives depends on the level of societal trust in the exchange, analysis and use of the data exchanged. Strong data governance frameworks are essential to ensure responsible data use. Without such governance regimes, the emergent data ecosystem will be hampered and the (perceived) risks will dominate the (perceived) benefits. Further, without adopting a human-centered approach to the design of data governance frameworks, including iterative prototyping and careful consideration of the experience, the responses may fail to be flexible and targeted to real needs.

Selected Readings List (in alphabetical order)

Annotated Selected Readings List (in alphabetical order)

Better Place Lab, “Privacy, Transparency and Trust.” Mozilla, 2015. Available from: http://www.betterplace-lab.org/privacy-report.

  • This report looks specifically at the risks involved in the social sector having access to datasets, and the main risks development organizations should focus on to develop a responsible data use practice.
  • Focusing on five specific countries (Brazil, China, Germany, India and Indonesia), the report displays specific country profiles, followed by a comparative analysis centering around the topics of privacy, transparency, online behavior and trust.
  • Some of the key findings mentioned are:
    • A general concern on the importance of privacy, with cultural differences influencing conception of what privacy is.
    • Cultural differences determining how transparency is perceived, and how much value is attached to achieving it.
    • To build trust, individuals need to feel a personal connection or get a personal recommendation – it is hard to build trust regarding automated processes.

Montjoye, Yves Alexandre de; Kendall, Jake and; Kerry, Cameron F. “Enabling Humanitarian Use of Mobile Phone Data.” The Brookings Institution, 2015. Available from: http://www.brookings.edu/research/papers/2014/11/12-enabling-humanitarian-use-mobile-phone-data.

  • Focussing in particular on mobile phone data, this paper explores ways of mitigating privacy harms involved in using call detail records for social good.
  • Key takeaways are the following recommendations for using data for social good:
    • Engaging companies, NGOs, researchers, privacy experts, and governments to agree on a set of best practices for new privacy-conscientious metadata sharing models.
    • Accepting that no framework for maximizing data for the public good will offer perfect protection for privacy, but there must be a balanced application of privacy concerns against the potential for social good.
    • Establishing systems and processes for recognizing trusted third-parties and systems to manage datasets, enable detailed audits, and control the use of data so as to combat the potential for data abuse and re-identification of anonymous data.
    • Simplifying the process among developing governments in regards to the collection and use of mobile phone metadata data for research and public good purposes.

Centre for Democracy and Technology, “Health Big Data in the Commercial Context.” Centre for Democracy and Technology, 2015. Available from: https://cdt.org/insight/health-big-data-in-the-commercial-context/.

  • Focusing particularly on the privacy issues related to using data generated by individuals, this paper explores the overlap in privacy questions this field has with other data uses.
  • The authors note that although the Health Insurance Portability and Accountability Act (HIPAA) has proven a successful approach in ensuring accountability for health data, most of these standards do not apply to developers of the new technologies used to collect these new data sets.
  • For non-HIPAA covered, customer facing technologies, the paper bases an alternative framework for consideration of privacy issues. The framework is based on the Fair Information Practice Principles, and three rounds of stakeholder consultations.

Center for Information Policy Leadership, “A Risk-based Approach to Privacy: Improving Effectiveness in Practice.” Centre for Information Policy Leadership, Hunton & Williams LLP, 2015. Available from: https://www.informationpolicycentre.com/uploads/5/7/1/0/57104281/white_paper_1-a_risk_based_approach_to_privacy_improving_effectiveness_in_practice.pdf.

  • This white paper is part of a project aiming to explain what is often referred to as a new, risk-based approach to privacy, and the development of a privacy risk framework and methodology.
  • With the pace of technological progress often outstripping the capabilities of privacy officers to keep up, this method aims to offer the ability to approach privacy matters in a structured way, assessing privacy implications from the perspective of possible negative impact on individuals.
  • With the intended outcomes of the project being “materials to help policy-makers and legislators to identify desired outcomes and shape rules for the future which are more effective and less burdensome”, insights from this paper might also feed into the development of innovative governance mechanisms aimed specifically at preventing individual harm.

Centre for Information Policy Leadership, “Data Governance for the Evolving Digital Market Place”, Centre for Information Policy Leadership, Hunton & Williams LLP, 2011. Available from: http://www.huntonfiles.com/files/webupload/CIPL_Centre_Accountability_Data_Governance_Paper_2011.pdf.

  • This paper argues that as a result of the proliferation of large scale data analytics, new models governing data inferred from society will shift responsibility to the side of organizations deriving and creating value from that data.
  • It is noted that, with the reality of the challenge corporations face of enabling agile and innovative data use “In exchange for increased corporate responsibility, accountability [and the governance models it mandates, ed.] allows for more flexible use of data.”
  • Proposed as a means to shift responsibility to the side of data-users, the accountability principle has been researched by a worldwide group of policymakers. Tailing the history of the accountability principle, the paper argues that it “(…) requires that companies implement programs that foster compliance with data protection principles, and be able to describe how those programs provide the required protections for individuals.”
  • The following essential elements of accountability are listed:
    • Organisation commitment to accountability and adoption of internal policies consistent with external criteria
    • Mechanisms to put privacy policies into effect, including tools, training and education
    • Systems for internal, ongoing oversight and assurance reviews and external verification
    • Transparency and mechanisms for individual participation
    • Means of remediation and external enforcement

Crawford, Kate; Schulz, Jason. “Big Data and Due Process: Toward a Framework to Redress Predictive Privacy Harm.” NYU School of Law, 2014. Available from: http://papers.ssrn.com/sol3/papers.cfm?abstract_id=2325784&download=yes.

  • Considering the privacy implications of large-scale analysis of numerous data sources, this paper proposes the implementation of a ‘procedural data due process’ mechanism to arm data subjects against potential privacy intrusions.
  • The authors acknowledge that some privacy protection structures already know similar mechanisms. However, due to the “inherent analytical assumptions and methodological biases” of big data systems, the authors argue for a more rigorous framework.

Letouze, Emmanuel, and; Vinck, Patrick. “The Ethics and Politics of Call Data Analytics”, DataPop Alliance, 2015. Available from: http://static1.squarespace.com/static/531a2b4be4b009ca7e474c05/t/54b97f82e4b0ff9569874fe9/1421442946517/WhitePaperCDRsEthicFrameworkDec10-2014Draft-2.pdf.

  • Focusing on the use of Call Detail Records (CDRs) for social good in development contexts, this whitepaper explores both the potential of these datasets – in part by detailing recent successful efforts in the space – and political and ethical constraints to their use.
  • Drawing from the Menlo Report Ethical Principles Guiding ICT Research, the paper explores how these principles might be unpacked to inform an ethics framework for the analysis of CDRs.

Data for Development External Ethics Panel, “Report of the External Ethics Review Panel.” Orange, 2015. Available from: http://www.d4d.orange.com/fr/content/download/43823/426571/version/2/file/D4D_Challenge_DEEP_Report_IBE.pdf.

  • This report presents the findings of the external expert panel overseeing the Orange Data for Development Challenge.
  • Several types of issues faced by the panel are described, along with the various ways in which the panel dealt with those issues.

Federal Trade Commission Staff Report, “Mobile Privacy Disclosures: Building Trust Through Transparency.” Federal Trade Commission, 2013. Available from: www.ftc.gov/os/2013/02/130201mobileprivacyreport.pdf.

  • This report looks at ways to address privacy concerns regarding mobile phone data use. Specific advise is provided for the following actors:
    • Platforms, or operating systems providers
    • App developers
    • Advertising networks and other third parties
    • App developer trade associations, along with academics, usability experts and privacy researchers

Mirani, Leo. “How to use mobile phone data for good without invading anyone’s privacy.” Quartz, 2015. Available from: http://qz.com/398257/how-to-use-mobile-phone-data-for-good-without-invading-anyones-privacy/.

  • This paper considers the privacy implications of using call detail records for social good, and ways to mitigate risks of privacy intrusion.
  • Taking example of the Orange D4D challenge and the anonymization strategy that was employed there, the paper describes how classic ‘anonymization’ is often not enough. The paper then lists further measures that can be taken to ensure adequate privacy protection.

Bernholz, Lucy. “Several Examples of Digital Ethics and Proposed Practices” Stanford Ethics of Data conference, 2014, Available from: http://www.scribd.com/doc/237527226/Several-Examples-of-Digital-Ethics-and-Proposed-Practices.

  • This list of readings prepared for Stanford’s Ethics of Data conference lists some of the leading available literature regarding ethical data use.

Abrams, Martin. “A Unified Ethical Frame for Big Data Analysis.” The Information Accountability Foundation, 2014. Available from: http://www.privacyconference2014.org/media/17388/Plenary5-Martin-Abrams-Ethics-Fundamental-Rights-and-BigData.pdf.

  • Going beyond privacy, this paper discusses the following elements as central to developing a broad framework for data analysis:
    • Beneficial
    • Progressive
    • Sustainable
    • Respectful
    • Fair

Lane, Julia; Stodden, Victoria; Bender, Stefan, and; Nissenbaum, Helen, “Privacy, Big Data and the Public Good”, Cambridge University Press, 2014. Available from: http://www.dataprivacybook.org.

  • This book treats the privacy issues surrounding the use of big data for promoting the public good.
  • The questions being asked include the following:
    • What are the ethical and legal requirements for scientists and government officials seeking to serve the public good without harming individual citizens?
    • What are the rules of engagement?
    • What are the best ways to provide access while protecting confidentiality?
    • Are there reasonable mechanisms to compensate citizens for privacy loss?

Richards, Neil M, and; King, Jonathan H. “Big Data Ethics”. Wake Forest Law Review, 2014. Available from: http://papers.ssrn.com/sol3/papers.cfm?abstract_id=2384174.

  • This paper describes the growing impact of big data analytics on society, and argues that because of this impact, a set of ethical principles to guide data use is called for.
  • The four proposed themes are: privacy, confidentiality, transparency and identity.
  • Finally, the paper discusses how big data can be integrated into society, going into multiple facets of this integration, including the law, roles of institutions and ethical principles.

OECD, “OECD Guidelines on the Protection of Privacy and Transborder Flows of Personal Data”. Available from: http://www.oecd.org/sti/ieconomy/oecdguidelinesontheprotectionofprivacyandtransborderflowsofpersonaldata.htm.

  • A globally used set of principles to inform thought about handling personal data, the OECD privacy guidelines serve as one the leading standards for informing privacy policies and data governance structures.
  • The basic principles of national application are the following:
    • Collection Limitation Principle
    • Data Quality Principle
    • Purpose Specification Principle
    • Use Limitation Principle
    • Security Safeguards Principle
    • Openness Principle
    • Individual Participation Principle
    • Accountability Principle

The White House Big Data and Privacy Working Group, “Big Data: Seizing Opportunities, Preserving Values”, White House, 2015. Available from: https://www.whitehouse.gov/sites/default/files/docs/big_data_privacy_report_5.1.14_final_print.pdf.

  • Documenting the findings of the White House big data and privacy working group, this report lists i.a. the following key recommendations regarding data governance:
    • Bringing greater transparency to the data services industry
    • Stimulating international conversation on big data, with multiple stakeholders
    • With regard to educational data: ensuring data is used for the purpose it is collected for
    • Paying attention to the potential for big data to facilitate discrimination, and expanding technical understanding to stop discrimination

William Hoffman, “Pathways for Progress” World Economic Forum, 2015. Available from: http://www3.weforum.org/docs/WEFUSA_DataDrivenDevelopment_Report2015.pdf.

  • This paper treats i.a. the lack of well-defined and balanced governance mechanisms as one of the key obstacles preventing particularly corporate sector data from being shared in a controlled space.
  • An approach that balances the benefits against the risks of large scale data usage in a development context, building trust among all stake holders in the data ecosystem, is viewed as key.
  • Furthermore, this whitepaper notes that new governance models are required not just by the growing amount of data and analytical capacity, and more refined methods for analysis. The current “super-structure” of information flows between institutions is also seen as one of the key reasons to develop alternatives to the current – outdated – approaches to data governance.

Technology and the Resilience of Metropolitan Regions


Book edited by Michael A. Pagano: “Can today’s city govern well if its citizens lack modern technology? How important is access to computers for lowering unemployment? What infrastructure does a city have to build in order to attract new business? Michael A. Pagano curates engagement with such questions by public intellectuals, academics, policy analysts, and citizens. Each essay explores the impact and opportunities technology provides in government and citizenship, health care, workforce development, service delivery to citizens, and metropolitan growth. As the authors show, rapidly emerging technologies and access to such technologies shape the ways people and institutions interact in the public sphere and private marketplace. The direction of metropolitan growth and development, in turn, depends on access to appropriate technology scaled and informed by the individual, household, and community needs of the region.

An in-depth and perceptive collection, Technology and the Resilience of Metropolitan Regions confronts the increasing challenges faced by metropolitan regions not only in governing, but in ensuring a sustainable and acceptable quality of life for their citizens.

Contributors are Randy Blankenhorn, Bénédicte Callan, Jane E. Fountain, Chen-Yu Kao, Sandee Kastrul, Karen Mossberger, Daniel X. O’Neil, Michelle Stohlmeyer Russell, Kuang-Ting Tai, Alfred Tatum, Stephanie Truchan, Darrell M. West, and Howard Wial….(More)”

How to use mobile phone data for good without invading anyone’s privacy


Leo Mirani in Quartz: “In 2014, when the West African Ebola outbreak was at its peak, some academics argued that the epidemic could have been slowed by using mobile phone data.

Their premise was simple: call-data records show the true nature of social networks and human movement. Understanding social networks and how people really move—as seen from phone movements and calls—could give health officials the ability to predict how a disease will move and where a disease will strike next, and prepare accordingly.

The problem is that call-data records are very hard to get a hold of. The files themselves are huge, there are enormous privacy risks, and the process of making the records safe for distribution is long.
First, the technical basics

Every time you make a phone call from your mobile phone to another mobile phone, the network records the following information (note: this is not a complete list):

  • The number from which the call originated
  • The number at which the call terminated
  • Start time of the call
  • Duration of the call
  • The ID number of the phone making the call
  • The ID number of the SIM card used to make the call
  • The code for the antenna used to make the call

On their own, these records are not creepy. Indeed, without them, networks would be unable to connect calls or bill customers. But it is easy to see why operators aren’t rushing to share this information. Even though the data includes none of the actual content of a phone call in the data, simply knowing which number is calling which, and from where and when, is usually more than enough to identify people.
So how can network operators use this valuable data for good while also protecting their own interests and those of their customers? A good example can be found in Africa, where Orange, a French mobile phone network with interests across several African countries, has for the second year run its “Data for Development” (D4D) program, which offers researchers a chance to mine call data for clues on development problems.

Steps to safe sharing

After a successful first year in Ivory Coast, Orange this year ran the D4D program in Senegal. The aim of the program is to give researchers and scientists at universities and other research labs access to data in order to find novel ways to aid development in health, agriculture, transport or urban planning, energy, and national statistics….(More)”

Social network targeting to maximise population behaviour change: a cluster randomised controlled trial


Paper by Prof. Nicholas A Christakis et al in The Lancet: “Information and behaviour can spread through interpersonal ties. By targeting influential individuals, health interventions that harness the distributive properties of social networks could be made more effective and efficient than those that do not. Our aim was to assess which targeting methods produce the greatest cascades or spillover effects and hence maximise population-level behaviour change…..Deployment of certain types of health interventions via network targeting, without increasing the number of individuals targeted or the resources used, could enhance the adoption and efficiency of those interventions, thereby improving population health….(More)