Health Citizenship: A New Social Contract To Improve The Clinical Trial Process

Curated on Posted on by Stefaan Verhulst

Essay by Cynthia Grossman  and Tanisha Carino: “…We call this new social contract health citizenship, which includes a set of implied rights and responsibilities for all parties.

Three fundamental truths underpin our efforts:

  1. The path to better health and the advancement of science begin and end with engaged patients.
  2. The biomedical research enterprise lives all around us — in clinical trials, the data in our wearables, electronic health records, and data used for payment.
  3. The stakeholders that fuel advancement — clinicians, academia, government, the private sector, and investors — must create a system focused on speeding medical research and ensuring that patients have appropriate access to treatments.

To find tomorrow’s cures, treatments, and prevention measures, every aspect of society needs to get involved. Health citizenship recognizes that the future of innovative research and development depends on both patients and the formal healthcare system stepping up to the plate.

Moving Toward A Culture Of Transparency  

Increasing clinical trials registration and posting of research results are steps in the direction of transparency. Access to information about clinical trials — enrollment criteria, endpoints, locations, and results — is critical to empowering patients, their families, and primary care physicians. Also, transparency has a cascading impact on the cost and speed of scientific discovery, through ensuring validation and reproducibility of results…..

Encouraging Data Sharing

Data is the currency of biomedical research, and now patients are poised to contribute more of it than ever. In fact, many patients who participate in clinical research expect that their data will be shared and want to be partners, not just participants, in how data is used to advance the science and clinical practice that impact their disease or condition.

Engaging more patients in data sharing is only one part of what is needed to advance a data-sharing ecosystem. The National Academies of Science, Engineering, and Medicine (formerly the Institute of Medicine) conducted a consensus study that details the challenges to clinical trial data sharing. Out of that study spun a new data-sharing platform, Vivli, which will publicly launch this year. The New England Journal of Medicine took an important step toward demonstrating the value of sharing clinical trial data through its SPRINT Data Challenge, where it opened up a data set and supported projects that sought to derive new insights from the existing data. Examples like these will go a long way toward demonstrating the value of data sharing to advancing science, academic careers, and, most importantly, patient health.

As the technology to share clinical trial data improves, it will become less of an impediment than aligning incentives. The academic environment incentivizes researchers through first author and top-tier journal publications, which contribute to investigators holding on to clinical trial data. A recent publication suggests a way to ensure academic credit, through publication credit, for sharing data sets and allows investigators to tag data sets with unique IDs.

While this effort could assist in incentivizing data sharing, we see the value of tagging data sets as a way to rapidly gather examples of the value of data sharing, including what types of data sets are taken up for analysis and what types of analyses or actions are most valuable. This type of information is currently missing, and, without the value proposition, it is difficult to encourage data sharing behavior.

The value of clinical trial data will need to be collectively reexamined through embracing the sharing of data both across clinical trials and combined with other types of data. Similar to the airline and car manufacturing industries sharing data in support of public safety,7 as more evidence is gathered to support the impact of clinical trial data sharing and as the technology is developed to do this safely and securely, the incentives, resources, and equity issues will need to be addressed collectively…(More)”.

The DNA Data We Have Is Too White. Scientists Want to Fix That

Curated on Posted on by Stefaan Verhulst

Sarah Elizabeth Richards at Smithsonian: “We live in the age of big DNA data. Scientists are eagerly sequencing millions of human genomes in the hopes of gleaning information that will revolutionize health care as we know it, from targeted cancer therapies to personalized drugs that will work according to your own genetic makeup.

There’s a big problem, however: the data we have is too white. The vast majority of participants in worldwide genomics research are of European descent. This disparity could potentially leave out minorities from benefitting from the windfall of precision medicine. “It’s hard to tailor treatments for people’s unique needs, if the people who are suffering from those diseases aren’t included in the studies,” explains Jacquelyn Taylor, associate professor in nursing who researches health equity at New York University.

That’s about to change with the “All of Us” initiative, an ambitious health research endeavor by the National Institutes of Health that launches in May. Originally created in 2015 under President Obama as the Precision Medicine Initiative, the project aims to collect data from at least 1 million people of all ages, races, sexual identities, income and education levels. Volunteers will be asked to donate their DNA, complete health surveys and wear fitness and blood pressure trackers to offer clues about the interplay of their stats, their genetics and their environment….(More)”.

Online gamers control trash collecting water robot

Curated on Posted on by Stefaan Verhulst

Springwise: “Urban Rivers is a Chicago-based charity focused on cleaning up the city’s rivers and re-wilding bankside habitats. One of their most visible pieces of work is a floating habitat installed in the middle of the river that runs through the city. An immediate problem that arose after installation was the accumulation of trash. At first, the company sent someone out on a kayak every other day to clean the habitat. Yet in less than a day, huge amounts of garbage would again be choking the space. The company’s solution was to create a Trash Task Force. The outcome of the Task Force’s work is the TrashBot, a remote-controlled garbage-collecting robot. The TrashBot allows gamers all over the world to do their bit in cleaning up Chicago’s river.

Anyone interested in playing the cleaning game can sign up via the Urban River website. Future development of the bot will likely focus on wildlife monitoring. Similarly, the end goal of the game will be that no one wants to play because there is no more garbage for collection.

From crowdsourced ocean data gathered by the fins of surfers’ boards to a solar-powered autonomous drone that gathers waste from harbor waters, the health of the world’s waterways is being improved in a number of ways. The surfboard fins use sensors to monitor sea salinity, acidity levels and wave motion. Those are all important coastal ecosystem factors that could be affected by climate change. The water drones are intelligent and use on-board cameras and sensors to learn about their environment and avoid other craft as they collect garbage from rivers, canals and harbors….(More)”.

Use of data & technology for promoting waste sector accountability in Nepal

Curated on Posted on by Stefaan Verhulst

Saroj Bista at YoungInnovations: “All the Nepalese people are saddened to see waste abandoned in the Capital, Kathmandu. Among them, many are concerned to find solutions to such a problem, including Kathmandu City. A 2015 report stated that Kathmandu Metropolitan City (KMC) alone receives 525 tonnes of waste in a day while it manages to collect 516 tonnes out if it, meaning that 8 tonnes of waste are left/abandoned….

Despite many stakeholders including the government sector, non-governmental organizations, private sectors have been working to address the problem associated with solid waste mapping in urban sector, the problem continued to exist.

YoungInnovations and Clean Up Nepal came together to discuss if we could tackle this problem. We discussed if keeping track of everybody’s efforts as well as noticing every piece of waste in the city raises accountability of stakeholders adds a value. YoungInnovations has over a decade of experience in developing data and evidence-based tech solutions to problem. Clean Up Nepal is a civil society organization working to provide an enabling environment to improve solid waste management and water, sanitation and hygiene in Nepal by working closely with local communities and relevant stakeholders. In this, both the organizations agreed to work mixing the expertise of each other to offer the government with an technology that avails stakeholders with proper data related to solid waste and its management.

Also, the preliminary idea was tested with some ongoing initiatives of such kind (Waste Atlas, Letsdoitworld etc) while consultations were held with some of the organizations like The GovLab, ICIMOD learn from their expertise on open data as well as environmental aspects. A remarkable example of smart waste management being carried out in Ulaanbaatar, Capital of Mongolia did motivate us to test the idea in Nepal….

Nepal Waste Map Web App

Nepal Waste Map web is a composite of several features primarily focused at the following:

  1. Display of key stats and information about solid waste
  2. Admin panel to interact with the data for taking possible actions (update, edit and delete)…

Nepal Waste Map Mobile

A Mobile App primarily reflects Nepal Waste Map in the mobile phones. Most of the features resemble with the Nepal Waste Map Web App.

However, some functionalities in the app are key in terms of data aspects:

Crowdsourcing Functionality

Any public (users) who use the app can report issues related to illegal waste dumping and waste esp. Plastic burning. Example: if I saw somebody burning plastic wastes, I can use the app for reporting such an incident along with the photo as evidence as well as coordinates. The admin of the web app can view the report in a real time and take action (not limited to defined as acknowledge and marking resolved)…(More)”.

To serve a free society, social media must evolve beyond data mining

Curated on Posted on by Stefaan Verhulst

Barbara Romzek and Aram Sinnreich at The Conversation: “…For years, watchdogs have been warning about sharing information with data-collecting companies, firms engaged in the relatively new line of business called some academics have called “surveillance capitalism.” Most casual internet users are only now realizing how easy – and common – it is for unaccountable and unknown organizations to assemble detailed digital profiles of them. They do this by combining the discrete bits of information consumers have given up to e-tailers, health sites, quiz apps and countless other digital services.

As scholars of public accountability and digital media systems, we know that the business of social media is based on extracting user data and offering it for sale. There’s no simple way for them to protect data as many users might expect. Like the social pollution of fake news, bullying and spam that Facebook’s platform spreads, the company’s privacy crisis also stems from a power imbalance: Facebook knows nearly everything about its users, who know little to nothing about it.

It’s not enough for people to delete their Facebook accounts. Nor is it likely that anyone will successfully replace it with a nonprofit alternativecentering on privacy, transparency and accountability. Furthermore, this problem is not specific just to Facebook. Other companies, including Google and Amazon, also gather and exploit extensive personal data, and are locked in a digital arms race that we believe threatens to destroy privacy altogether….

Governments need to be better guardians of public welfare – including privacy. Many companies using various aspects of technology in new ways have so far avoided regulation by stoking fears that rules might stifle innovation. Facebook and others have often claimed that they’re better at regulating themselves in an ever-changing environment than a slow-moving legislative process could be….

To encourage companies to serve democratic principles and focus on improving people’s lives, we believe the chief business model of the internet needs to shift to building trust and verifying information. While it won’t be an immediate change, social media companies pride themselves on their adaptability and should be able to take on this challenge.

The alternative, of course, could be far more severe. In the 1980s, when federal regulators decided that AT&T was using its power in the telephone market to hurt competition and consumers, they forced the massive conglomerate to break up. A similar but less dramatic change happened in the early 2000s when cellphone companies were forced to let people keep their phone numbers even if they switched carriers.

Data, and particularly individuals’ personal data, are the precious metals of the internet age. Protecting individual data while expanding access to the internet and its many social benefits is a fundamental challenge for free societies. Creating, using and protecting data properly will be crucial to preserving and improving human rights and civil liberties in this still young century. To meet this challenge will require both vigilance and vision, from businesses and their customers, as well as governments and their citizens….(More).

Citizen Sensing: A Toolkit

Curated on Posted on by Stefaan Verhulst

Book from Making Sense: “Collaboration using open-source technologies makes it possible to create new and powerful forms of community action, social learning and citizenship. There are now widely accessible platforms through which we can come together to make sense of urgent challenges, and discover ways to address these. Together we can shape our streets, neighbourhoods, cities and countries – and in turn, shape our future. You can join with others to become the solution to challenges in our environment, in our communities and in the way we live together.

In this book, there are ideas and ways of working that can help you build collective understanding and inspire others to take action. By coming together with others on issues you identify and define yourselves, and by designing and using the right tools collaboratively, both your awareness and ability to act will be improved. In the process, everyone involved will have better insights, better arguments and better discussions; sometimes to astonishing effect!

We hope this book will help you engage people to learn more about an issue that concerns you, support you to take action, and change the world for the better. This resource will teach you how to scope your questions, identify and nurture relevant communities, and plan an effective campaign. It will then help you gather data and evidence, interpret your findings, build awareness and achieve tangible outcomes. Finally, it will show you how to reflect on these outcomes, and offers suggestions on how you can leave a lasting legacy.

This book is intended to help community activists who are curious or concerned about one or more issues, whether local or global, and are motivated to take action. This resource can also be of value to professionals in organisations which support community actions and activists. Finally, this book will be of interest to researchers in the fields of citizen science, community activism and participatory sensing, government officials and other public policy actors who wish to include citizens’ voices in the decision-making process…(More)”.

Selected Readings on Data Responsibility, Refugees and Migration

Curated on Posted on by Andrew Young

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

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 Collaboration for Migration was originally published in 2018.

Special thanks to Paul Currion whose data responsibility literature review gave us a headstart when developing the below. (Check out his article listed below on Refugee Identity)

The collection below is also meant to complement our article in the Stanford Social Innovation Review on Data Collaboration for Migration where we emphasize the need for a Data Responsibility Framework moving forward.

From climate change to politics to finance, there is growing recognition that some of the most intractable problems of our era are information problems. In recent years, the ongoing refugee crisis has increased the call for new data-driven approaches to address the many challenges and opportunities arising from migration. While data – including data from the private sector – holds significant potential value for informing analysis and targeted international and humanitarian response to (forced) migration, decision-makers often lack an actionable understanding of if, when and how data could be collected, processed, stored, analyzed, used, and shared in a responsible manner.

Data responsibility – including the responsibility to protect data and shield its subjects from harms, and the responsibility to leverage and share data when it can provide public value – is an emerging field seeking to go beyond just privacy concerns. The forced migration arena has a number of particularly important issues impacting responsible data approaches, including the risks of leveraging data regarding individuals fleeing a hostile or repressive government.

In this edition of the GovLab’s Selected Readings series, we examine the emerging literature on the data responsibility approaches in the refugee and forced migration space – part of an ongoing series focused on Data Responsibiltiy. The below reading list features annotated readings related to the Policy and Practice of data responsibility for refugees, and the specific responsibility challenges regarding Identity and Biometrics.

Data Responsibility and Refugees – Policy and Practice

International Organization for Migration (IOM) (2010) IOM Data Protection Manual. Geneva: IOM.

  • This IOM manual includes 13 data protection principles related to the following activities: lawful and fair collection, specified and legitimate purpose, data quality, consent, transfer to third parties, confidentiality, access and transparency, data security, retention and personal data, application of the principles, ownership of personal data, oversight, compliance and internal remedies (and exceptions).
  • For each principle, the IOM manual features targeted data protection guidelines, and templates and checklists are included to help foster practical application.

Norwegian Refugee Council (NRC) Internal Displacement Monitoring Centre / OCHA (eds.) (2008) Guidance on Profiling Internally Displaced Persons. Geneva: Inter-Agency Standing Committee.

  • This NRC document contains guidelines on gathering better data on Internally Displaced Persons (IDPs), based on country context.
  • IDP profile is defined as number of displaced persons, location, causes of displacement, patterns of displacement, and humanitarian needs among others.
  • It further states that collecting IDPs data is challenging and the current condition of IDPs data are hampering assistance programs.
  • Chapter I of the document explores the rationale for IDP profiling. Chapter II describes the who aspect of profiling: who IDPs are and common pitfalls in distinguishing them from other population groups. Chapter III describes the different methodologies that can be used in different contexts and suggesting some of the advantages and disadvantages of each, what kind of information is needed and when it is appropriate to profile.

United Nations High Commissioner for Refugees (UNHCR). Model agreement on the sharing of personal data with Governments in the context of hand-over of the refugee status determination process. Geneva: UNHCR.

  • This document from UNHCR provides a template of agreement guiding the sharing of data between a national government and UNHCR. The model agreement’s guidance is aimed at protecting the privacy and confidentiality of individual data while promoting improvements to service delivery for refugees.

United Nations High Commissioner for Refugees (UNHCR) (2015). Policy on the Protection of Personal Data of Persons of Concern to UNHCR. Geneva: UNHCR.

  • This policy outlines the rules and principles regarding the processing of personal data of persons engaged by UNHCR with the purpose of ensuring that the practice is consistent with UNGA’s regulation of computerized personal data files that was established to protect individuals’ data and privacy.
  • UNHCR require its personnel to apply the following principles when processing personal data: (i) Legitimate and fair processing (ii) Purpose specification (iii) Necessity and proportionality (iv) Accuracy (v) Respect for the rights of the data subject (vi) Confidentiality (vii) Security (viii) Accountability and supervision.

United Nations High Commissioner for Refugees (UNHCR) (2015) Privacy Impact Assessment of UNHCR Cash Based Interventions.

  • This impact assessment focuses on privacy issues related to financial assistance for refugees in the form of cash transfers. For international organizations like UNHCR to determine eligibility for cash assistance, data “aggregation, profiling, and social sorting techniques,” are often needed, leading a need for a responsible data approach.
  • This Privacy Impact Assessment (PIA) aims to identify the privacy risks posed by their program and seek to enhance safeguards that can mitigate those risks.
  • Key issues raised in the PIA involves the challenge of ensuring that individuals’ data will not be used for purposes other than those initially specified.

Data Responsibility in Identity and Biometrics

Bohlin, A. (2008) “Protection at the Cost of Privacy? A Study of the Biometric Registration of Refugees.” Lund: Faculty of Law of the University of Lund.

  • This 2008 study focuses on the systematic biometric registration of refugees conducted by UNHCR in refugee camps around the world, to understand whether enhancing the registration mechanism of refugees contributes to their protection and guarantee of human rights, or whether refugee registration exposes people to invasions of privacy.
  • Bohlin found that, at the time, UNHCR failed to put a proper safeguards in the case of data dissemination, exposing the refugees data to the risk of being misused. She goes on to suggest data protection regulations that could be put in place in order to protect refugees’ privacy.

Currion, Paul. (2018) “The Refugee Identity.” Medium.

  • Developed as part of a DFID-funded initiative, this essay considers Data Requirements for Service Delivery within Refugee Camps, with a particular focus on refugee identity.
  • Among other findings, Currion finds that since “the digitisation of aid has already begun…aid agencies must therefore pay more attention to the way in which identity systems affect the lives and livelihoods of the forcibly displaced, both positively and negatively.”
  • Currion argues that a Responsible Data approach, as opposed to a process defined by a Data Minimization principle, provides “useful guidelines,” but notes that data responsibility “still needs to be translated into organisational policy, then into institutional processes, and finally into operational practice.”

Farraj, A. (2010) “Refugees and the Biometric Future: The Impact of Biometrics on Refugees and Asylum Seekers.” Colum. Hum. Rts. L. Rev. 42 (2010): 891.

  • This article argues that biometrics help refugees and asylum seekers establish their identity, which is important for ensuring the protection of their rights and service delivery.
  • However, Farraj also describes several risks related to biometrics, such as, misidentification and misuse of data, leading to a need for proper approaches for the collection, storage, and utilization of the biometric information by government, international organizations, or other parties.  

GSMA (2017) Landscape Report: Mobile Money, Humanitarian Cash Transfers and Displaced Populations. London: GSMA.

  • This paper from GSMA seeks to evaluate how mobile technology can be helpful in refugee registration, cross-organizational data sharing, and service delivery processes.
  • One of its assessments is that the use of mobile money in a humanitarian context depends on the supporting regulatory environment that contributes to unlocking the true potential of mobile money. The examples include extension of SIM dormancy period to anticipate infrequent cash disbursements, ensuring that persons without identification are able to use the mobile money services, and so on.
  • Additionally, GMSA argues that mobile money will be most successful when there is an ecosystem to support other financial services such as remittances, airtime top-ups, savings, and bill payments. These services will be especially helpful in including displaced populations in development.

GSMA (2017) Refugees and Identity: Considerations for mobile-enabled registration and aid delivery. London: GSMA.

  • This paper emphasizes the importance of registration in the context of humanitarian emergency, because being registered and having a document that proves this registration is key in acquiring services and assistance.
  • Studying cases of Kenya and Iraq, the report concludes by providing three recommendations to improve mobile data collection and registration processes: 1) establish more flexible KYC for mobile money because where refugees are not able to meet existing requirements; 2) encourage interoperability and data sharing to avoid fragmented and duplicative registration management; and 3) build partnership and collaboration among governments, humanitarian organizations, and multinational corporations.

Jacobsen, Katja Lindskov (2015) “Experimentation in Humanitarian Locations: UNHCR and Biometric Registration of Afghan Refugees.” Security Dialogue, Vol 46 No. 2: 144–164.

  • In this article, Jacobsen studies the biometric registration of Afghan refugees, and considers how “humanitarian refugee biometrics produces digital refugees at risk of exposure to new forms of intrusion and insecurity.”

Jacobsen, Katja Lindskov (2017) “On Humanitarian Refugee Biometrics and New Forms of Intervention.” Journal of Intervention and Statebuilding, 1–23.

  • This article traces the evolution of the use of biometrics at the Office of the United Nations High Commissioner for Refugees (UNHCR) – moving from a few early pilot projects (in the early-to-mid-2000s) to the emergence of a policy in which biometric registration is considered a ‘strategic decision’.

Manby, Bronwen (2016) “Identification in the Context of Forced Displacement.” Washington DC: World Bank Group. Accessed August 21, 2017.

  • In this paper, Bronwen describes the consequences of not having an identity in a situation of forced displacement. It prevents displaced population from getting various services and creates higher chance of exploitation. It also lowers the effectiveness of humanitarian actions, as lacking identity prevents humanitarian organizations from delivering their services to the displaced populations.
  • Lack of identity can be both the consequence and and cause of forced displacement. People who have no identity can be considered illegal and risk being deported. At the same time, conflicts that lead to displacement can also result in loss of ID during travel.
  • The paper identifies different stakeholders and their interest in the case of identity and forced displacement, and finds that the biggest challenge for providing identity to refugees is the politics of identification and nationality.
  • Manby concludes that in order to address this challenge, there needs to be more effective coordination among governments, international organizations, and the private sector to come up with an alternative of providing identification and services to the displaced persons. She also argues that it is essential to ensure that national identification becomes a universal practice for states.

McClure, D. and Menchi, B. (2015). Challenges and the State of Play of Interoperability in Cash Transfer Programming. Geneva: UNHCR/World Vision International.

  • This report reviews the elements that contribute to the interoperability design for Cash Transfer Programming (CTP). The design framework offered here maps out these various features and also looks at the state of the problem and the state of play through a variety of use cases.
  • The study considers the current state of play and provides insights about the ways to address the multi-dimensionality of interoperability measures in increasingly complex ecosystems.     

NRC / International Human Rights Clinic (2016). Securing Status: Syrian refugees and the documentation of legal status, identity, and family relationships in Jordan.

  • This report examines Syrian refugees’ attempts to obtain identity cards and other forms of legally recognized documentation (mainly, Ministry of Interior Service Cards, or “new MoI cards”) in Jordan through the state’s Urban Verification Exercise (“UVE”). These MoI cards are significant because they allow Syrians to live outside of refugee camps and move freely about Jordan.
  • The text reviews the acquirement processes and the subsequent challenges and consequences that refugees face when unable to obtain documentation. Refugees can encounter issues ranging from lack of access to basic services to arrest, detention, forced relocation to camps and refoulement.  
  • Seventy-two Syrian refugee families in Jordan were interviewed in 2016 for this report and their experiences with obtaining MoI cards varied widely.

Office of Internal Oversight Services (2015). Audit of the operations in Jordan for the Office of the United Nations High Commissioner for Refugees. Report 2015/049. New York: UN.

  • This report documents the January 1, 2012 – March 31, 2014 audit of Jordanian operations, which is intended to ensure the effectiveness of the UNHCR Representation in the state.
  • The main goals of the Regional Response Plan for Syrian refugees included relieving the pressure on Jordanian services and resources while still maintaining protection for refugees.
  • The audit results concluded that the Representation was initially unsatisfactory, and the OIOS suggested several recommendations according to the two key controls which the Representation acknowledged. Those recommendations included:
    • Project management:
      • Providing training to staff involved in financial verification of partners supervise management
      • Revising standard operating procedure on cash based interventions
      • Establishing ways to ensure that appropriate criteria for payment of all types of costs to partners’ staff are included in partnership agreements
    • Regulatory framework:
      • Preparing annual need-based procurement plan and establishing adequate management oversight processes
      • Creating procedures for the assessment of renovation work in progress and issuing written change orders
      • Protecting data and ensuring timely consultation with the UNHCR Division of Financial and Administrative Management

UNHCR/WFP (2015). Joint Inspection of the Biometrics Identification System for Food Distribution in Kenya. Geneva: UNHCR/WFP.

  • This report outlines the partnership between the WFP and UNHCR in its effort to promote its biometric identification checking system to support food distribution in the Dadaab and Kakuma refugee camps in Kenya.
  • Both entities conducted a joint inspection mission in March 2015 and was considered an effective tool and a model for other country operations.
  • Still, 11 recommendations are proposed and responded to in this text to further improve the efficiency of the biometric system, including real-time evaluation of impact, need for automatic alerts, documentation of best practices, among others.

Replicating the Justice Data Lab in the USA: Key Considerations

Curated on Posted on by Stefaan Verhulst

Blog by Tracey Gyateng and Tris Lumley: “Since 2011, NPC has researched, supported and advocated for the development of impact-focussed Data Labs in the UK. The goal has been to unlock government administrative data so that organisations (primarily nonprofits) who provide a social service can understand the impact of their services on the people who use them.

So far, one of these Data Labs has been developed to measure re-offending outcomes- the Justice Data Lab-, and others are currently being piloted for employment and education. Given our seven years of work in this area, we at NPC have decided to reflect on the key factors needed to create a Data Lab with our report: How to Create an Impact Data Lab. This blog outlines these factors, examines whether they are present in the USA, and asks what the next steps should be — drawing on the research undertaken with the Governance Lab….Below we examine the key factors and to what extent they appear to be present within the USA.

Environment: A broad culture that supports impact measurement. Similar to the UK, nonprofits in the USA are increasingly measuring the impact they have had on the participants of their service and sharing the difficulties of undertaking robust, high quality evaluations.

Data: Individual person-level administrative data. A key difference between the two countries is that, in the USA, personal data on social services tends to be held at a local, rather than central level. In the UK social services data such as reoffending, education and employment are collated into a central database. In the USA, the federal government has limited centrally collated personal data, instead this data can be found at state/city level….

A leading advocate: A Data Lab project team, and strong networks. Data Labs do not manifest by themselves. They requires a lead agency to campaign with, and on behalf of, nonprofits to set out a persuasive case for their development. In the USA, we have developed a partnership with the Governance Lab to seek out opportunities where Data Labs can be established but given the size of the country, there is scope for further collaborations/ and or advocates to be identified and supported.

Customers: Identifiable organisations that would use the Data Lab. Initial discussions with several US nonprofits and academia indicate support for a Data Lab in their context. Broad consultation based on an agreed region and outcome(s) will be needed to fully assess the potential customer base.

Data owners: Engaged civil servants. Generating buy-in and persuading various stakeholders including data owners, analysts and politicians is a critical part of setting up a data lab. While the exact profiles of the right people to approach can only be assessed once a region and outcome(s) of interest have been chosen, there are encouraging signs, such as the passing of the Foundations for Evidence-Based Policy Making Act of 2017 in the house of representatives which, among other things, mandates the appointment of “Chief Evaluation Officers” in government departments- suggesting that there is bipartisan support for increased data-driven policy evaluation.

Legal and ethical governance: A legal framework for sharing data. In the UK, all personal data is subject to data protection legislation, which provides standardised governance for how personal data can be processed across the country and within the European Union. A universal data protection framework does not exist within the USA, therefore data sharing agreements between customers and government data-owners will need to be designed for the purposes of Data Labs, unless there are existing agreements that enable data sharing for research purposes. This will need to be investigated at the state/city level of a desired Data Lab.

Funding: Resource and support for driving the set-up of the Data Lab. Most of our policy lab case studies were funded by a mixture of philanthropy and government grants. It is expected that a similar mixed funding model will need to be created to establish Data Labs. One alternative is the model adopted by the Washington State Institute for Public Policy (WSIPP), which was created by the Washington State Legislature and is funded on a project basis, primarily by the state. Additionally funding will be needed to enable advocates of a Data Lab to campaign for the service….(More)”.

Lessons from Cambridge Analytica: one way to protect your data

Curated on Posted on by Stefaan Verhulst

Julia Apostle in the Financial Times: “The unsettling revelations about how data firm Cambridge Analytica surreptitiously exploited the personal information of Facebook users is yet another demoralising reminder of how much data has been amassed about us, and of how little control we have over it.

Unfortunately, the General Data Protection Regulation privacy laws that are coming into force across Europe — with more demanding consent, transparency and accountability requirements, backed by huge fines — may improve practices, but they will not change the governing paradigm: the law labels those who gather our data as “controllers”. We are merely “subjects”.

But if the past 20 years have taught us anything, it is that when business and legislators have been too slow to adapt to public demand — for goods and services that we did not even know we needed, such as Amazon, Uber and bitcoin — computer scientists have stepped in to fill the void. And so it appears that the realms of data privacy and security are deserving of some disruption. This might come in the form of “self-sovereign identity” systems.

The theory behind self-sovereign identity is that individuals should control the data elements that form the basis of their digital identities, and not centralised authorities such as governments and private companies. In the current online environment, we all have multiple log-ins, usernames, customer IDs and personal data spread across countless platforms and stored in myriad repositories.

Instead of this scattered approach, we should each possess the digital equivalent of a wallet that contains verified pieces of our identities. We can then choose which identification to share, with whom, and when. Self-sovereign identity systems are currently being developed.

They involve the creation of a unique and persistent identifier attributed to an individual (called a decentralised identity), which cannot be taken away. The systems use public/private key cryptography, which enables a user with a private key (a string of numbers) to share information with unlimited recipients who can access the encrypted data if they possess a corresponding public key.

The systems also rely on decentralised ledger applications like blockchain. While key cryptography has been around for a long time, it is the development of decentralised ledger technology, which also supports the trading of cryptocurrencies without the involvement of intermediaries, that will allow self-sovereign identity systems to take off. The potential uses for decentralised identity are legion and small-scale implementation is already happening. The Swiss municipality of Zug started using a decentralised identity system called uPort last year, to allow residents access to certain government services. The municipality announced it will also use the system for voting this spring….

Decentralised identity is more difficult to access and therefore there is less financial incentive for hackers to try. Self-sovereign identity systems could eliminate many of our data privacy concerns while empowering individuals in the online world and turning the established data order on its head. But the success of the technology depends on its widespread adoption….(More)“

Launching the Data Culture Project

Curated on Posted on by Stefaan Verhulst

New project by MIT Center for Civic Media and the Engagement Lab@Emerson College: “Learning to work with data is like learning a new language — immersing yourself in the culture is the best way to do it. For some individuals, this means jumping into tools like Excel, Tableau, programming, or R Studio. But what does this mean for a group of people that work together? We often talk about data literacy as if it’s an individual capacity, but what about data literacy for a community? How does an organization learn how to work with data?

About a year ago we (Rahul Bhargava and Catherine D’Ignazio) found that more and more users of our DataBasic.io suite of tools and activities were asking this question — online and in workshops. In response, with support from the Stanford Center on Philanthropy and Civil Society, we’ve worked together with 25 organizations to create the Data Culture Project. We’re happy to launch it publicly today! Visit datacultureproject.org to learn more.

The Data Culture Project is a hands-on learning program to kickstart a data culture within your organization. We provide facilitation videos to help you run creative introductions to get people across your organization talking to each other — from IT to marketing to programs to evaluation. These are not boring spreadsheet trainings! Try running our fun activities — one per month works as a brown bag lunch to focus people on a common learning goal. For example, “Sketch a Story” brings people together around basic concepts of quantitative text analysis and visual storytelling. “Asking Good Questions” introduces principles of exploratory data analysis in a fun environment. What’s more, you can use the sample data that we provide, or you can integrate your organization’s data as the topic of conversation and learning….(More)”.