A Parent-To-Parent Campaign To Get Vaccine Rates Up

Curated on Posted on by Stefaan Verhulst

Alex Olgin at NPR: “In 2017, Kim Nelson had just moved her family back to her hometown in South Carolina. Boxes were still scattered around the apartment, and while her two young daughters played, Nelson scrolled through a newspaper article on her phone. It said religious exemptions for vaccines had jumped nearly 70 percent in recent years in the Greenville area — the part of the state she had just moved to.

She remembers yelling to her husband in the other room, “David, you have to get in here! I can’t believe this.”

Up until that point, Nelson hadn’t run into mom friends who didn’t vaccinate….

Nelson started her own group, South Carolina Parents for Vaccines. She began posting scientific articles online. She started responding to private messages from concerned parents with specific questions. She also found that positive reinforcement was important and would roam around the mom groups, sprinkling affirmations.

“If someone posts, ‘My child got their two-months shots today,’ ” Nelson says, she’d quickly post a follow-up comment: “Great job, mom!”

Nelson was inspired by peer-focused groups around the country doing similar work. Groups with national reach like Voices for Vaccines and regional groups like Vax Northwest in Washington state take a similar approach, encouraging parents to get educated and share facts about vaccines with other parents….

Public health specialists are raising concerns about the need to improve vaccination rates. But efforts to reach vaccine-hesitant parents often fail. When presented with facts about vaccine safety, parents often remained entrenched in a decision not to vaccinate.

Pediatricians could play a role — and many do — but they’re not compensated to have lengthy discussions with parents, and some of them find it a frustrating task. That has left an opening for alternative approaches, like Nelson’s.

Nelson thought it would be best to zero in on moms who were still on the fence about vaccines.

“It’s easier to pull a hesitant parent over than it is somebody who is firmly anti-vax,” Nelson says. She explains that parents who oppose vaccination often feel so strongly about it that they won’t engage in a discussion. “They feel validated by that choice — it’s part of community, it’s part of their identity.”…(More)”.

Open data governance and open governance: interplay or disconnect?

Curated on Posted on by Stefaan Verhulst

Blog Post by Ana Brandusescu, Carlos Iglesias, Danny Lämmerhirt, and Stefaan Verhulst (in alphabetical order): “The presence of open data often gets listed as an essential requirement toward “open governance”. For instance, an open data strategy is reviewed as a key component of many action plans submitted to the Open Government Partnership. Yet little time is spent on assessing how open data itself is governed, or how it embraces open governance. For example, not much is known on whether the principles and practices that guide the opening up of government — such as transparency, accountability, user-centrism, ‘demand-driven’ design thinking — also guide decision-making on how to release open data.

At the same time, data governance has become more complex and open data decision-makers face heightened concerns with regards to privacy and data protection. The recent implementation of the EU’s General Data Protection Regulation (GDPR) has generated an increased awareness worldwide of the need to prevent and mitigate the risks of personal data disclosures, and that has also affected the open data community. Before opening up data, concerns of data breaches, the abuse of personal information, and the potential of malicious inference from publicly available data may have to be taken into account. In turn, questions of how to sustain existing open data programs, user-centrism, and publishing with purpose gain prominence.

To better understand the practices and challenges of open data governance, we have outlined a research agenda in an earlier blog post. Since then, and perhaps as a result, governance has emerged as an important topic for the open data community. The audience attending the 5th International Open Data Conference (IODC) in Buenos Aires deemed governance of open data to be the most important discussion topic. For instance, discussions around the Open Data Charter principles during and prior to the IODC acknowledged the role of an integrated governance approach to data handling, sharing, and publication. Some conclude that the open data movement has brought about better governance, skills, technologies of public information management which becomes an enormous long-term value for government. But what does open data governance look like?

Understanding open data governance

To expand our earlier exploration and broaden the community that considers open data governance, we convened a workshop at the Open Data Research Symposium 2018. Bringing together open data professionals, civil servants, and researchers, we focused on:

  • What is open data governance?
  • When can we speak of “good” open data governance, and
  • How can the research community help open data decision-makers toward “good” open data governance?

In this session, open data governance was defined as the interplay of rules, standards, tools, principles, processes and decisions that influence what government data is opened up, how and by whom. We then explored multiple layers that can influence open data governance.

In the following, we illustrate possible questions to start mapping the layers of open data governance. As they reflect the experiences of session participants, we see them as starting points for fresh ethnographic and descriptive research on the daily practices of open data governance in governments….(More)”.

Using digital technologies to improve the design and enforcement of public policies

Curated on Posted on by Stefaan Verhulst

OECD Digital Economy Paper: “Digitalisation is having a profound impact on social and economic activity. While often benefiting from a very long history of public investment in R&D, digitalisation has been largely driven by the private sector. However, the combined adoption of new digital technologies, increased reliance upon new data sources, and use of advanced analytic methods hold significant potential to: i) improve the effectiveness and enforcement of public policies; ii) enable innovative policy design and impact evaluation, and; iii) expand citizen and stakeholder engagement in policy making and implementation. These benefits are likely to be greatest in policy domains where outcomes are only observable at significant cost and/or where there is significant heteroregeneity in responses across different agents. In this paper we provide a review of initiatives across a number of fields including: competition, education, environment, innovation, and taxation….(More)”.

Can transparency make extractive industries more accountable?

Curated on Posted on by Stefaan Verhulst

Blog by John Gaventa at IDS: “Over the last two decades great strides have been made in terms of holding extractive industries accountable.  As demonstrated at the Global Assembly of Publish What You Pay (PWYP), which I attended recently in Dakar, Senegal, more information than ever about revenue flows to governments from the oil gas and mining industries is now publicly available.  But new research suggests that such information disclosure, while important, is by itself not enough to hold companies to account, and address corruption.

… a recent study in Mozambique by researchers Nicholas Aworti and Adriano Adriano Nuvunga questions this assumption.  Supported by the Action for Empowerment and Accountability (A4EA) Research Programme, the research explored why greater transparency of information has not necessarily led to greater social and political action for accountability.

Like many countries in Africa, Mozambique is experiencing massive outside investments in recently discovered natural resources, including rich deposits of natural gas and oil, as well as coal and other minerals.  Over the last decade, NGOs like the Centre for Public Integrity, who helped facilitate the study, have done brave and often pioneering work to elicit information on the extractive industry, and to publish it in hard-hitting reports, widely reported in the press, and discussed at high-level stakeholder meetings.

Yet, as Aworti and Nuvunga summarise in a policy brief based on their research, ‘neither these numerous investigative reports nor the EITI validation reports have inspired social and political action such as public protest or state prosecution.’   Corruption continues, and despite the newfound mineral wealth, the country remains one of the poorest in Africa.

The authors ask, ‘If information disclosure has not been enough to galvanise citizen and institutional action, what could be the reason?’ The research found 18 other factors that affect whether information leads to action, including the quality of the information and how it is disseminated, the degree of citizen empowerment, the nature of the political regime, and the role of external donors in insisting on accountability….

The research and the challenges highlighted by the Mozambique case point to the need for new approaches.   At the Global Assembly in Dakar several hundred of PYWP’s more than 700 members from 45 countries gathered to discuss and to approve the organisation’s next strategic plan. Among other points, the plan calls for going beyond transparency –  to more intentionally use information to foster and promote citizen action,  strengthen  grassroots participation and voice on mining issues, and  improve links with other related civil society movements working on gender, climate and tax justice in the extractives field.

Coming at a time where increasing push back and repression threaten the space for citizens to speak truth to power, this is a bold call.  I chaired two sessions with PWYP activists who had been beaten, jailed, threatened or exiled for challenging mining companies, and 70 per cent of the delegates at the conference said their work had been affected by this more repressive environment….(More)”.

Tomorrow’s Data Heroes

Curated on Posted on by Stefaan Verhulst

Article by Florian Gröne, Pierre Péladeau, and Rawia Abdel Samad: “Telecom companies are struggling to find a profitable identity in today’s digital sphere. What about helping customers control their information?…

By 2025, Alex had had enough. There no longer seemed to be any distinction between her analog and digital lives. Everywhere she went, every purchase she completed, and just about every move she made, from exercising at the gym to idly surfing the Web, triggered a vast flow of data. That in turn meant she was bombarded with personalized advertising messages, targeted more and more eerily to her. As she walked down the street, messages appeared on her phone about the stores she was passing. Ads popped up on her all-purpose tablet–computer–phone pushing drugs for minor health problems she didn’t know she had — until the symptoms appeared the next day. Worse, she had recently learned that she was being reassigned at work. An AI machine had mastered her current job by analyzing her use of the firm’s productivity software.

It was as if the algorithms of global companies knew more about her than she knew herself — and they probably did. How was it that her every action and conversation, even her thoughts, added to the store of data held about her? After all, it was her data: her preferences, dislikes, interests, friendships, consumer choices, activities, and whereabouts — her very identity — that was being collected, analyzed, profited from, and even used to manage her. All these companies seemed to be making money buying and selling this information. Why shouldn’t she gain some control over the data she generated, and maybe earn some cash by selling it to the companies that had long collected it free of charge?

So Alex signed up for the “personal data manager,” a new service that promised to give her control over her privacy and identity. It was offered by her U.S.-based connectivity company (in this article, we’ll call it DigiLife, but it could be one of many former telephone companies providing Internet services in 2025). During the previous few years, DigiLife had transformed itself into a connectivity hub: a platform that made it easier for customers to join, manage, and track interactions with media and software entities across the online world. Thanks to recently passed laws regarding digital identity and data management, including the “right to be forgotten,” the DigiLife data manager was more than window dressing. It laid out easy-to-follow choices that all Web-based service providers were required by law to honor….

Today, in 2019, personal data management applications like the one Alex used exist only in nascent form, and consumers have yet to demonstrate that they trust these services. Nor can they yet profit by selling their data. But the need is great, and so is the opportunity for companies that fulfill it. By 2025, the total value of the data economy as currently structured will rise to more than US$400 billion, and by monetizing the vast amounts of data they produce, consumers can potentially recapture as much as a quarter of that total.

Given the critical role of telecom operating companies within the digital economy — the central position of their data networks, their networking capabilities, their customer relationships, and their experience in government affairs — they are in a good position to seize this business opportunity. They might not do it alone; they are likely to form consortia with software companies or other digital partners. Nonetheless, for legacy connectivity companies, providing this type of service may be the most sustainable business option. It may also be the best option for the rest of us, as we try to maintain control in a digital world flooded with our personal data….(More)”.

Legitimate Change & The Critical Role of Cities

Curated on Posted on by Stefaan Verhulst

Blog by Indy Johar: “We are living in the midst of rapid change and mounting evidence of the fragility of public trust in societal institutions. Increasingly our means of change are restricted not by capital or capacity (though we often like to point at these shortfalls), but rather by our means to create legitimacy, or shared coherence as to the proposed direction of travel, even as the climate threats to our civilisation become increasingly paramount.

How do we address the growing fragility of legitimacy in our increasingly complex contexts? There are multiple forces, trends and drivers in play — including major demographic shifts, climate destabilisation, nutrient system hazards, and industrial revolution 4.0 consequences — which are creating feedback loops with second and third order spillovers and unintended or unimagined effects.

Cities are the sites where these complex systems knot together — including property rights, food systems, logistics, financial systems, water systems, human development institutions, schools, universities, etc. Transforming these underlying systems in an integrated manner is required in order to address the challenges we face and open up opportunities to create the full decarbonisation of our society, unlock inclusive innovation capacity of our economy, and build climate stabilisation resilience . This requires system innovation at the city scale.

It is this complexity, knot of systems of systems and the need for socially legitimate solutions, which is forcing a new architecture of legitimacy and the growing global calls for the strategic devolution of nation states — and the rise of the city. But this transition is about more than just nation states handing over power to cities (which to date has been much of the call — understandably). If cities are to be genuine “engines” of Human Development 2.0, where we can address and transcend our societal challenges to create a regenerative industrial revolution 4.0, they will need to transform the lock-in of systems and unleash the economies of scope, context and systems change to create a legitimate landscape for solutions in a complex the world. It is this latter work that needs to be developed and reimagined.

Remaking legitimacy involves remaking the deliberative and participatory infrastructure of civic debate and civic policy making. This needs to go beyond just new tools of opinion harvesting (whilst they do have a space and a need). We increasingly recognise addressing complex challenge requires deliberative processes if we are to avoid meaningless simplicity or meaningless solutions — either addressing averages that don’t exist, or wishing away reality as we are increasingly witnessing with the political denials of climate destabilisation….(More)”.

Governance of artificial intelligence and personal health information

Curated on Posted on by Stefaan Verhulst

Jenifer Sunrise Winter in Digital Policy, Regulation and Governance: “This paper aims to assess the increasing challenges to governing the personal health information (PHI) essential for advancing artificial intelligence (AI) machine learning innovations in health care. Risks to privacy and justice/equity are discussed, along with potential solutions….

This paper argues that these characteristics of machine learning will overwhelm existing data governance approaches such as privacy regulation and informed consent. Enhanced governance techniques and tools will be required to help preserve the autonomy and rights of individuals to control their PHI. Debate among all stakeholders and informed critique of how, and for whom, PHI-fueled health AI are developed and deployed are needed to channel these innovations in societally beneficial directions.

Health data may be used to address pressing societal concerns, such as operational and system-level improvement, and innovations such as personalized medicine. This paper informs work seeking to harness these resources for societal good amidst many competing value claims and substantial risks for privacy and security….(More).

The Role of Big Data Analytics in Predicting Suicide

Curated on Posted on by Stefaan Verhulst

Chapter by Ronald C. Kessler et al: “…reviews the long history of using electronic medical records and other types of big data to predict suicide. Although a number of the most recent of these studies used machine learning (ML) methods, these studies were all suboptimal both in the features used as predictors and in the analytic approaches used to develop the prediction models. We review these limitations and describe opportunities for making improvements in future applications.

We also review the controversy among clinical experts about using structured suicide risk assessment tools (be they based on ML or older prediction methods) versus in-depth clinical evaluations of needs for treatment planning. Rather than seeing them as competitors, we propose integrating these different approaches to capitalize on their complementary strengths. We also emphasize the distinction between two types of ML analyses: those aimed at predicting which patients are at highest suicide risk, and those aimed at predicting the treatment options that will be best for individual patients. We explain why both are needed to optimize the value of big data ML methods in addressing the suicide problem….(More)”.

See also How Search Engine Data Enhance the Understanding of Determinants of Suicide in India and Inform Prevention: Observational Study.

Rescuing Human Rights: A Radically Moderate Approach

Curated on Posted on by Stefaan Verhulst

Book by Hurst Hannum: “The development of human rights norms is one of the most significant achievements in international relations and law since 1945, but the continuing influence of human rights is increasingly being questioned by authoritarian governments, nationalists, and pundits. Unfortunately, the proliferation of new rights, linking rights to other issues such as international crimes or the activities of business, and attempting to address every social problem from a human rights perspective risk undermining their credibility.

Rescuing Human Rights calls for understanding ‘human rights’ as international human rights law and maintaining the distinctions between binding legal obligations on governments and broader issues of ethics, politics, and social change. Resolving complex social problems requires more than simplistic appeals to rights, and adopting a ‘radically moderate’ approach that recognizes both the potential and the limits of international human rights law, offers the best hope of preserving the principle that we all have rights, simply because we are human….(More)”.

Co-Creating e-Government Services: An Empirical Analysis of Participation Methods in Belgium

Curated on Posted on by Stefaan Verhulst

Paper by Anthony Simonofski, Monique Snoeck and Benoît Vanderose: “As citizens have more and more opportunities to participate in public life, it is essential that administrations integrate this participation in their e-government processes. A smarter, more participatory, governance is a well-recognized and essential part of any city that wants to become “Smart” and generate public value. In this chapter, we will focus on the impact of this participatory approach on the development of e-government services by the city. Therefore, the goal of this chapter is to identify which methods administrations can apply to co-create their egovernment services with citizens and to understand the gap between the methods used in practice and citizens’ preferences.

As citizens have more and more opportunities to participate in public life, it is essential that administrations integrate this participation in their e-government processes. A smarter, more participatory, governance is a well-recognized and essential part of any city that wants to become “Smart” and generate public value. In this chapter, we will focus on the impact of this participatory approach on the development of e-government services by the city. Therefore, the goal of this chapter is to identify which methods administrations can apply to co-create their e-government services with citizens and to understand the gap between the methods used in practice and citizens’ preferences.

This chapter contributes to research and practice in different ways. First, the literature review allows the identification of eight participation methods to co-create e-government services. Second, we further examine these methods by means of 28 in-depth interviews, a questionnaire sent to public servants and a questionnaire sent to citizens. This multi-method approach allows identifying the barriers and drivers of public servants regarding the co-creation of e-government services but also the citizens’ perception of these methods. By contrasting the identified methods with their implementation, we better understand the discrepancies between literature and practice. At the same time, this chapter will give practitioners a repository of participation methods as well as information about the perception public servants and citizens have of them. Finally, we expect the insights provided in this chapter will stimulate research on the practical use of all these different methods…(More)”