scholarly journals Public Trust, Deliberative Engagement and Health Data Projects: Beyond Legal Provisions 

2021 ◽  
Vol 7 (1) ◽  
pp. 125-133
Author(s):  
Nishtha Bharti ◽  
Cian O'Donovan ◽  
Melanie Smallman ◽  
James Wilson

In England, a new scheme for collating and sharing General Practitioners’ data has faced resistance from various quarters and has been deferred twice. While insufficient communication and ambiguous safeguards explain the widespread dissatisfaction expressed by the public and experts, we argue how dwindling public trust can be the most damaging variable in this picture - with implications not only for this scheme, but for any future project that aims to mobilise health data for medical research and innovation. We also highlight the indispensability of deliberative public engagement on the values being prioritised in health data initiatives, the significance of securing social license in addition to legal assurances, and the lessons in it of global pertinence. 

Author(s):  
Mhairi Aitken ◽  
Annette Braunack-Mayer ◽  
Felicity Flack ◽  
Kimberlyn M McGrail ◽  
Michael Burgess ◽  
...  

Introduction“The Consensus Statement on Public Involvement and Engagement with Data-Intensive Health Research”, recent data breaches, and growing public awareness and controversy associated with secondary use of health data all highlight the need to understand what data sharing the public will support, under what circumstances, for what purposes and with whom. Objectives and ApproachThis symposium explores methods and findings from public engagement at all stages of data linkage research, beginning with short presentations (~6-8 minutes) on recent work: Mhairi Aitken: Consensus Statement - principles and an application using deliberative workshops to explore public expectations of public benefits from data-intensive health research Annette Braunack-Mayer/Felicity Flack: Surveys and citizens’ juries: Sharing government data with private industry Kim McGrail/Mike Burgess: Public deliberations on cross-sector data linkage, and combining public and private sources of data Alison Paprica: Plain language communication informed by Health Data Research Network Canada’s Public Advisory Council. Half the session will be spent interacting with the audience through live polling. The moderator will post a series of poll question such as “What is the most important thing for meaningful public engagement?” to prompt audience thinking on the topic. After the audience responses are revealed, panelists will share their own views about what they think is the best answer, and the main reason(s) behind their choice. The last 10-15 minutes of the session will be reserved for Q&A and dialogue with the audience. ResultsWe anticipate that this approach will surface emerging and tacit knowledge from presenters and the audience, and augment that through generative discussion. Conclusion / ImplicationsSession attendees will leave with a better understanding of the current state of knowledge and ways to talk about that understanding with other researchers, policy makers and the public.


2021 ◽  
Vol 20 (06) ◽  
pp. A02
Author(s):  
Artemis Skarlatidou ◽  
Mordechai Haklay

Positioning citizen science within the broader historical public engagement framework demonstrates how it has the potential to effectively tackle research and innovation issues. Citizen science approaches have their own challenges, which need to be considered in order to achieve this aim and contribute to wider and deeper public engagement. However, programme evaluations, which discuss lessons learned in engaging the public and other stakeholders with science are rare. To address this gap, we present the H2020-funded DITOs project and discuss the use of logic models in citizen science. We share the project’s assumptions, design considerations for deeper engagement and its impact pathways demonstrating how logic models can be utilised in citizen science to monitor programme effectiveness and for their successful implementation. We hope that this work will inspire citizen science practitioners to use similar tools and by doing so, share their experiences and potential barriers. This knowledge is essential for improving the way citizen science is currently practiced and its impacts to both science and society.


Author(s):  
Alan F. T. Winfield ◽  
Marina Jirotka

This paper explores the question of ethical governance for robotics and artificial intelligence (AI) systems. We outline a roadmap—which links a number of elements, including ethics, standards, regulation, responsible research and innovation, and public engagement—as a framework to guide ethical governance in robotics and AI. We argue that ethical governance is essential to building public trust in robotics and AI, and conclude by proposing five pillars of good ethical governance. This article is part of the theme issue ‘Governing artificial intelligence: ethical, legal, and technical opportunities and challenges’.


NanoEthics ◽  
2021 ◽  
Author(s):  
Jantien Willemijn Schuijer ◽  
Jacqueline Broerse ◽  
Frank Kupper

AbstractThe progressive introduction of emerging technologies, such as nanotechnology, has created a true testing ground for public engagement initiatives. Widespread experimentation has taken place with public and stakeholder dialogue and inclusive approaches to research and innovation (R&I) more generally. Against this backdrop, Social Science and Humanities (SSH) scholars have started to manifest themselves differently. They have taken on new roles in the public engagement field, including more practical and policy-oriented ones that seek to actively open the R&I system to wider public scrutiny. With public engagement gaining prominence, there has been a call for increased reflexivity among SSH scholars about their role in this field. In this paper, we study our own roles and stakes as SSH scholars in a European-funded public engagement project on responsible nanotechnology. We introduce a general role landscape and outline five distinct roles (engaged academic, deliberative practitioner, change agent, dialogue capacity builder, and project worker) that we—as SSH scholars—inhabited throughout the project. We discuss the synergistic potential of combining these five roles and elaborate on several tensions within the roles that we needed to navigate. We argue that balancing many roles requires explicit role awareness, reflexivity, and new competencies that have not been examined much in the public engagement literature so far. Our role landscape and exemplification of how it can be used to reflexively study one’s own practices may be a useful starting point for scholars who are seeking to better understand, assess, or communicate about their position in the public engagement field.


Author(s):  
Mikko Rask ◽  
Richard Worthington

The term public engagement (PE) refers to processes that provide a distinct role for citizens or stakeholder groups in policymaking. Such engagement is distinctive because it aims to create opportunities for mutual learning among policymakers, scientists, stakeholders, and members of the public. In so doing, PE involves a particular type of voice in public debate and policymaking that is different from more established discourses, such as those expressed through official policymaking channels, scientific institutions, civil society activists, or the public media. By the early 1970s, PE had emerged in the context of an overall democratization movement in Western societies through such innovations as the “citizen jury” in the United States and “planning cells” in Germany. Today, it is often more pragmatically motivated, such as in the European Commission, where PE is seen as a tool for responsible research and innovation that helps to anticipate and assess potential implications and societal expectations of research and innovation, as well as to design more inclusive and sustainable research policies. The first global PE processes in history were created to incorporate citizen voices into United Nations (UN) conventions on biodiversity and climate change. Building on theories of deliberative democracy and tested PE practices, a new World Wide Views process was developed to provide informed and considered input from ordinary citizens to the 2009 UN climate summit. This and subsequent World Wide Views (WWViews) deliberations have demonstrated that PE may potentially open up policy discourses that are constricted and obfuscated by organized interests. A telling example is provided by the World Wide Views on Climate and Energy deliberation held on June 5, 2015, where nearly 10,000 ordinary citizens gathered in 76 countries to consider and express their views on the issues to be addressed at the UN climate summit in Paris later that year. In a noteworthy departure from prevailing media and policy discourses, two-thirds of the participating citizens saw measures to fight climate change as “mostly an opportunity to improve our quality of life,” while only a quarter saw them as “mostly a threat to our quality of life,” a result that was consistent across high-, middle-, and low-income countries. Recent research on PE has indicated that when effectively implemented, such processes can increase the legitimacy, quality, and capacity of decision-making. Earlier aspirations for broader impacts, such as the democratization of policymaking at all levels, are now less prominent but arguably indispensable for achieving both immediate and longer-range goals. The relatively new concept of a deliberative system captures this complexity by moving beyond the narrow focus on single PE events encountered in much research to date, recognizing that single events rarely affect the course of policymaking. The evolving prospects for PE in biodiversity and climate change policy, therefore, can be seen as requiring ongoing improvements in the capacities of the deliberative system.


2019 ◽  
pp. medethics-2019-105651 ◽  
Author(s):  
Shona Kalkman ◽  
Johannes van Delden ◽  
Amitava Banerjee ◽  
Benoît Tyl ◽  
Menno Mostert ◽  
...  

IntroductionInternational sharing of health data opens the door to the study of the so-called ‘Big Data’, which holds great promise for improving patient-centred care. Failure of recent data sharing initiatives indicates an urgent need to invest in societal trust in researchers and institutions. Key to an informed understanding of such a ‘social license’ is identifying the views patients and the public may hold with regard to data sharing for health research.MethodsWe performed a narrative review of the empirical evidence addressing patients’ and public views and attitudes towards the use of health data for research purposes. The literature databases PubMed (MEDLINE), Embase, Scopus and Google Scholar were searched in April 2019 to identify relevant publications. Patients’ and public attitudes were extracted from selected references and thematically categorised.ResultsTwenty-seven papers were included for review, including both qualitative and quantitative studies and systematic reviews. Results suggest widespread—though conditional—support among patients and the public for data sharing for health research. Despite the fact that participants recognise actual or potential benefits of data research, they expressed concerns about breaches of confidentiality and potential abuses of the data. Studies showed agreement on the following conditions: value, privacy, risk minimisation, data security, transparency, control, information, trust, responsibility and accountability.ConclusionsOur results indicate that a social license for data-intensive health research cannot simply be presumed. To strengthen the social license, identified conditions ought to be operationalised in a governance framework that incorporates the diverse patient and public values, needs and interests.


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