Engaging the Public in Decisions about Health Research—The Role of Public Deliberation

2013 ◽  
Vol 15 (1) ◽  
pp. 56-64 ◽  
Keyword(s):  
Health Research ◽  
Public Deliberation ◽  
The Public

scholarly journals To CAG or not to CAG? Difficulties in determining submission to the Confidentiality Advisory Group: a commentary

2020 ◽  
pp. 174701612092006
Author(s):  
V Ranieri ◽  
H Stynes ◽  
E Kennedy
Keyword(s):  
Informed Consent ◽  
Health Research ◽  
Local Information ◽  
Advisory Group ◽  
Primary Role ◽  
The Public ◽  
Confidential Data ◽  
Information Governance ◽  
Group A

The Confidentiality Advisory Group (CAG) is a specialised body that advises the Health Research Authority (HRA) and the Secretary of State for Health on requests for access to confidential information, in the absence of informed consent from its owners. Its primary role is to oversee the safe use of such information and to counsel the governing bodies mentioned above as to whether such use is appropriate or inappropriate. Researchers who seek access to England or Wales-based confidential data, for medical purposes that are in the interest of the public, are typically required to submit an application to this body. However, it is not always clear to researchers whether requests for access to patient data fit within the remit of the CAG or a Trust’s local information governance team. This commentary will, therefore, explore the role of the CAG and reflect on how best to support researchers with this question.

scholarly journals A design-led framework for engaged research: Using a design approach to understand and place the public at the core of health and social care

2021 ◽  
Vol 69 (3) ◽  
pp. 1-18
Author(s):  
Mary Galvin ◽  
Avril Kennan ◽  
Éidín Ní Shé
Keyword(s):  
Health Research ◽  
Social Care ◽  
Social Research ◽  
Research Process ◽  
The Public ◽  
Umbrella Organisation ◽  
Health And Social Care ◽  
Academic Partner ◽  
New Policies

Abstract This paper offers a multi-perspective approach on the role of engaged research in health and social care. Each of the authors focuses on their individual experiences of this domain, from the perspective of an academic partner of the Health Research Board’s PPI Ignite programme, a CEO of an umbrella organisation for health research charities and a researcher in design innovation, focusing on health research. The paper outlines the values which underpin public and patient involvement, as well as examples of its application as engaged research. It details how organisations like Health Research Charities Ireland support and enable engaged research within health and social research and policy. This paper offers a framework for facilitating dialogue and response across all stakeholders in the engaged research process, illustrating the importance of engaged research and how we can further our understanding and application of it within health and social care policy by adopting a design-led approach. We argue that a design-led approach can both facilitate engaged research as well as support policymakers in the design of new policies and practices.

Dewey and Public Philosophy

2018 ◽  
pp. 696-712
Author(s):  
Noëlle McAfee
Keyword(s):  
Public Deliberation ◽  
Public Intellectuals ◽  
Public Philosophy ◽  
The Public

Of late many philosophers have taken up the mantle of public philosophy, but, unlike Dewey, many think that the goal is to perform philosophy in public, to broadcast widely their arguments, or become renowned as public intellectuals. Many aim to improve the public, to help people think more rationally and critically, argue more deliberatively and logically, and perhaps see the light about philosophical matters. But Dewey shows that none of such work is democratic, for it usurps the role of a public to identify problems and their sources and skips over any need for public deliberation on what should be done. From a Deweyan perspective, the key for public philosophy is to remember that public problems are best fathomed by the public itself, which may enlist experts or governments to fix the problems but alone is the best judge of what needs to be addressed and whether the remedy is successful.

scholarly journals PERAN BADAN PERMUSYAWARATAN DESA DALAM MEWUJUDKAN PEMBENTUKAN PERATURAN DESA YANG PARTISIPATIF DI KABUPATEN LAMPUNG TIMUR

FIAT JUSTISIA ◽  
2017 ◽  
Vol 10 (3) ◽  
Author(s):  
Ahadi Fajrin Prasetya
Keyword(s):  
Qualitative Research ◽  
Public Participation ◽  
Public Deliberation ◽  
Literary Study ◽  
Historical Approach ◽  
The Public ◽  
Public Figures ◽  
Village Government ◽  
The Village

AbstractThe objective of this research was to find out why the Village Representative Board (BPD) was not yet able to draft participative village regulations in East Lampung district. This was a qualitative research with normative and empirical jurisdiction approaches with literary study, statute approach, case approach and historical approach. Data were collected with the literary study. The results showed that the role of Village Representative Board (BPD) and drafting village regulation has been exercised in a participative way but not optimal because of some factors. The village regulation should be drafted by BPD, but the village regulation was initiated and drafted by Head of Village. BPD lack of knowledge related to their tasks and functions in village legislation, mechanism and process of making participative village regulation, and BPD was less optimal in making synergy with public related to participative village regulation making. The rights of the public in Bojong village has been participative in making village regulation but not optimal as it was regulated Article 96 of Law Number 12 of 2011 on legislation related to public participation rights. The making of village regulation in Bojong so far was conducted with village public deliberation by public figures as public representatives of each sub-villages to deliver public aspiration in making village regulation in Bojong village. Interview results with the chairman of BPD in Bojong village suggested that village deliberation in making village regulation was only a formality because the majority of participants such as public figures, religion figures, youth figures, and members of BPD almost always agreed with any draft of village regulation proposed by village government. Keywords: Village Representative Board (BPD), village regulation, participativeAbstrakTujuan dari penelitian ini adalah untuk mengetahui mengapa Badan Permusyawaratan Desa (BPD) belum mampu menyusun peraturan desa yang partisipatif di Kabupaten Lampung Timur. Ini merupakan penelitian kualitatif dengan yuridis normatif dan empiris pendekatan dengan studi sastra, pendekatan undang-undang, pendekatan kasus dan pendekatan historis. Data dikumpulkan dengan studi sastra. Hasil penelitian menunjukkan bahwa peran Badan Permusyawaratan Desa (BPD) dan penyusunan peraturan desa telah dilakukan dengan cara partisipatif tetapi tidak optimal karena beberapa faktor. Peraturan desa harus disusun oleh BPD, tapi peraturan desa yang digagas dan dirancang oleh Kepala Desa. BPD kurangnya pengetahuan yang berkaitan dengan tugas dan fungsi mereka dalam undang-undang desa, mekanisme dan proses pembuatan peraturan desa partisipatif, dan BPD kurang optimal dalam membuat sinergi dengan masyarakat terkait partisipatif pembuatan peraturan desa. Hak-hak masyarakat di Desa Bojong telah partisipatif dalam membuat peraturan desa tetapi tidak optimal seperti yang diatur Pasal 96 UU Nomor 12 Tahun 2011 tentang undang-undang yang berkaitan dengan hak-hak partisipasi publik. Pembuatan peraturan desa di Bojong sejauh dilakukan dengan desa musyawarah publik oleh tokoh-tokoh masyarakat sebagai perwakilan masyarakat dari masing-masing sub desa untuk menyampaikan aspirasi masyarakat dalam membuat peraturan desa di Desa Bojong. Hasil wawancara dengan ketua BPD di Desa Bojong menyarankan bahwa musyawarah desa dalam membuat peraturan desa hanya formalitas, karena mayoritas peserta seperti tokoh masyarakat, tokoh agama, tokoh pemuda, dan anggota BPD hampir selalu setuju dengan rancangan peraturan desa diusulkan oleh pemerintah desa. Kata Kunci: Badan Permusyawaratan Desa (BPD), Peraturan Desa, Partisipatif

Communication, the media and deliberation

2020 ◽  
pp. 159-180
Author(s):  
Tim Marshall ◽  
Tim Marshall
Keyword(s):  
Two Dimensions ◽  
Public Deliberation ◽  
Public Understanding ◽  
Extensive Experience ◽  
The Public ◽  
The Press ◽  
Neutral Process ◽  
The Media

Part of the processes analysed in chapters 6 and 7 concerns the communication and mediation of ideas and policies. This is not an innocent or neutral process, but something which can affect deeply the content of any field being communicated and mediated. This chapter examines two dimensions of these activities. One focus is on the media, including the range of communication fields affecting planning. Particular study is made of the role of the press centrally and locally. The impending demise of the local press in Britain is studied, noting the problematic effects for the public understanding of planning. The second focus is on the actual and potential roles of public deliberation and participation. It is argued that there is scope to improve this considerably, working on the foundation of extensive experience built up nationally and internationally over recent decades.

The Limits of Tolerance from the Perspective of Their Public Legitimization

2019 ◽  
Vol 11 (1) ◽  
pp. 41-48
Author(s):  
Plamen Makariev ◽  
Keyword(s):  
Critical Analysis ◽  
Private Life ◽  
Public Deliberation ◽  
Public Communication ◽  
The Public ◽  
Liberal Democratic ◽  
National Minorities ◽  
The Status ◽  
Minority Policies

The limits of tolerance are discussed in this article with regard to the status of religious, ethnic, and national minorities in liberal-democratic societies. The question that the author is trying to answer is this: how can minority policies be designed in such a way that they provide the due conditions for the reproduction of minority identities over time which, at the same time, do not compromise national integrity. The line of demarcation between these two kinds of policy would also be the limit of tolerance, concerning the role of these identities in society. In the first part of the article a critical analysis is made of the policy of cultural neutrality of the state, based on the differentiation between the approaches to minority issues in the public and in the private life of the citizens. In the second part an alternative possible solution is presented―to draw the limits of tolerance by means of the legitimization of minority policies via public communication which is protected from manipulations by means of the methodology of public deliberation.

scholarly journals The Social Functionality of Humor in Group-Based Research

2018 ◽  
Vol 29 (3) ◽  
pp. 431-444 ◽  
Author(s):  
Rebecca Hewer ◽  
Katherine Smith ◽  
Gillian Fergie
Keyword(s):  
Health Policy ◽  
Health Research ◽  
Power Dynamics ◽  
Positive Role ◽  
Policy Issues ◽  
The Public ◽  
Qualitative Health Research ◽  
The Social ◽  
Facilitative Role

Citizens’ juries provide deliberative fora within which members of the public can debate complex policy issues. In this article, we reflect on our experience of undertaking three citizens’ juries addressing health inequalities, to explore the positive and facilitative role that humor can play within group-based research focusing on sensitive health policy issues. We demonstrate how both participants and researchers engaged in the production of humor in ways which troubled prevailing power dynamics and facilitated positive relationships. We conclude by recommending that researchers, particularly health policy researchers and those pursuing the kind of lengthy group-based fora associated with deliberative research, consider the positive role humor can play when engaged reflexively. In so doing, we make a major contribution to extant literature on both deliberative fora (which is yet to consider humor’s facilitative capacities) and the role of humor in qualitative (health) research (which rarely explores researcher complicity in humor production).

More than Words: A Multidimensional Approach to Deliberative Democracy

2020 ◽  
pp. 003232172095056 ◽  
Author(s):  
Ricardo Fabrino Mendonça ◽  
Selen A Ercan ◽  
Hans Asenbaum
Keyword(s):  
Deliberative Democracy ◽  
Crucial Role ◽  
Verbal Communication ◽  
Public Deliberation ◽  
Democratic Politics ◽  
Multidimensional Approach ◽  
The Public ◽  
Public Debates ◽  
Ways Of Thinking

Since its inception, a core aspiration of deliberative democracy has been to enable more and better inclusion within democratic politics. In this article, we argue that deliberative democracy can achieve this aspiration only if it goes beyond verbal forms of communication and acknowledges the crucial role of non-verbal communication in expressing and exchanging arguments. The article develops a multidimensional approach to deliberative democracy by emphasizing the visual, sonic and physical dimensions of communication in public deliberation. We argue that non-verbal modes of communication can contribute to public deliberation when they (1) are used as part of reason-giving processes, (2) enable the inclusion of marginalized actors in public debates and (3) induce reflection and encourage new ways of thinking about the public controversies at hand.

Keeping the Internal Tension Under Check

2021 ◽  
pp. 289-320
Author(s):  
Margit Cohn
Keyword(s):  
Decision Making ◽  
Public Sphere ◽  
Rule Of Law ◽  
Public Deliberation ◽  
Political Life ◽  
Direct Access ◽  
The Rule Of Law ◽  
The Public ◽  
The Public Sphere

Concerned with the role of the judiciary as a constraining agent of fuzzy law, the chapter is laid out in two layers. First, in light of the special problems attached to reliance on fuzzy law, it advances arguments that call for enhanced review in this context. Secondly, the chapter joins the ongoing general debate over the role of the judiciary in the shaping of the public sphere. The argument for active review is based both on the principles reflected in the rule of law ideal, and on an argument from governance. Setting judicial review in a framework that seeks to enhance participation, the judiciary, stripped of accusations of supremacy over all other forms of decision-making, operates as an intermediator by offering members of society, especially those who do not have direct access to government corridors, an additional forum for voicing their concerns and thereby contributing to public deliberation over all contested aspects of social and political life.

scholarly journals Sharing confidential health data for research purposes in the UK: where are ‘publics’ in the public interest?

2020 ◽  
Vol 16 (2) ◽  
pp. 249-265 ◽  
Author(s):  
Annie Sorbie
Keyword(s):  
Public Interest ◽  
Health Research ◽  
Health Data ◽  
The Public ◽  
Social Legitimacy ◽  
The Law ◽  
The Uk ◽  
Multiple Actors ◽  
Research Endeavour

In this article I respond to the tendency of the law to approach ‘the public interest’ as a legal test, thereby drawing the criticism that this narrow notion of what purports to be in the public interest is wholly disconnected from the views of actual publics, and lacks social legitimacy. On the other hand, to simply extrapolate outputs from public engagement work into policy (or indeed law) is equally problematic, and risks being at best ineffective and at worst reinforcing existing inequalities. Given this apparent disconnect between these conceptions of the public interest, and the shortfalls inherent in each, this article scrutinises this disjuncture. I argue that the application of a processual lens to the construction of the legal and regulatory role of the public interest sheds light on how legal notions of the public interest, and attitudes of actual publics towards data sharing, might be reconciled. I characterise this processual approach as being iterative and flexible, specifically drawing attention to the way that multiple actors, processes and interests interact, change and evolve over time in the health research endeavour. This approach is elaborated through two case studies that illustrate how the public interest appears in law (broadly conceived). Its application provides novel insights into the ways in which the public interest can be crafted within and beyond the law to better inform the development of health research regulation.

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