The social licence for data-intensive health research: towards co-creation, public value and trust

Abstract Background The rise of Big Data-driven health research challenges the assumed contribution of medical research to the public good, raising questions about whether the status of such research as a common good should be taken for granted, and how public trust can be preserved. Scandals arising out of sharing data during medical research have pointed out that going beyond the requirements of law may be necessary for sustaining trust in data-intensive health research. We propose building upon the use of a social licence for achieving such ethical governance. Main text We performed a narrative review of the social licence as presented in the biomedical literature. We used a systematic search and selection process, followed by a critical conceptual analysis. The systematic search resulted in nine publications. Our conceptual analysis aims to clarify how societal permission can be granted to health research projects which rely upon the reuse and/or linkage of health data. These activities may be morally demanding. For these types of activities, a moral legitimation, beyond the limits of law, may need to be sought in order to preserve trust. Our analysis indicates that a social licence encourages us to recognise a broad range of stakeholder interests and perspectives in data-intensive health research. This is especially true for patients contributing data. Incorporating such a practice paves the way towards an ethical governance, based upon trust. Public engagement that involves patients from the start is called for to strengthen this social licence. Conclusions There are several merits to using the concept of social licence as a guideline for ethical governance. Firstly, it fits the novel scale of data-related risks; secondly, it focuses attention on trustworthiness; and finally, it offers co-creation as a way forward. Greater trust can be achieved in the governance of data-intensive health research by highlighting strategic dialogue with both patients contributing the data, and the public in general. This should ultimately contribute to a more ethical practice of governance.

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Involving the Public in Data Linkage Research

International Journal for Population Data Science ◽

10.23889/ijpds.v5i5.1507 ◽

2020 ◽

Vol 5 (5) ◽

Author(s):

Mhairi Aitken ◽

Annette Braunack-Mayer ◽

Felicity Flack ◽

Kimberlyn M McGrail ◽

Michael Burgess ◽

...

Keyword(s):

Public Engagement ◽

Health Research ◽

Consensus Statement ◽

Data Linkage ◽

Health Data ◽

Advisory Council ◽

Research Network ◽

Plain Language ◽

The Public ◽

Data Intensive

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.

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Beyond Pedagogies of Repression

Monthly Review ◽

10.14452/mr-067-10-2016-03_6 ◽

2016 ◽

Vol 67 (10) ◽

pp. 57 ◽

Cited By ~ 7

Author(s):

Henry A. Giroux

Keyword(s):

Young People ◽

Critical Pedagogy ◽

Common Good ◽

Social Issues ◽

Historical Memory ◽

High Stakes Testing ◽

High Stakes ◽

The Public ◽

The Social ◽

Critical Literacies

At a time when the public good is under attack and there seems to be a growing apathy toward the social contract or any other civic-minded investment in public values and the larger common good, education has to be seen as more than a credential or a pathway to a job, and pedagogy as more than teaching to the test. Against pedagogies of repression such as high-stakes testing, which largely serve as neoliberal forms of discipline to promote conformity and limit the imagination, critical pedagogy must be viewed as crucial to understanding and overcoming the current crises of agency, politics, and historical memory faced by many young people today. One of the challenges facing the current generation of educators and students is the need to reclaim the role that education has historically played in developing critical literacies and civic capacities. Education must mobilize students to be critically engaged agents, attentive to important social issues and alert to the responsibility of deepening and expanding the meaning and practices of a vibrant democracy.… At the heart of such a challenge is the question of what education should accomplish in a democracy.… In a world that has largely abandoned egalitarian and democratic impulses, what will it take to educate young people to challenge authority, resist the notion that education is only training, and redefine public and higher education as democratic public spheres?<a href="http://monthlyreview.org/index/volume-67-number-10" title="Vol. 67, No. 10: March 2016" target="_self">Click here to purchase a PDF version of this article at the Monthly Review website.</a>

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Consensus Statement on Public Involvement and Engagement with Data-Intensive Health Research

International Journal for Population Data Science ◽

10.23889/ijpds.v4i1.586 ◽

2019 ◽

Vol 4 (1) ◽

Cited By ~ 8

Author(s):

Mhairi Aitken ◽

Mary P Tully ◽

Carol Porteous ◽

Simon Denegri ◽

Sarah Cunningham-Burley ◽

...

Keyword(s):

Health Research ◽

Best Practice ◽

Public Involvement ◽

Consensus Statement ◽

Research Community ◽

Socially Responsible ◽

The Public ◽

Data Intensive ◽

International Group ◽

Societal Benefits

This consensus statement reflects the deliberations of an international group of stakeholders with a range of expertise in public involvement and engagement (PI&E) relating to data-intensive health research. It sets out eight key principles to establish a secure role for PI&E in and with the research community internationally and ensure best practice in its execution. Our aim is to promote culture change and societal benefits through ensuring a socially responsible trajectory for innovations in this field. Our key premise is that the public should not be characterised as a problem to be overcome but a key part of the solution to establish socially beneficial data-intensive health research for all.

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The Social Functionality of Humor in Group-Based Research

Qualitative Health Research ◽

10.1177/1049732318800675 ◽

2018 ◽

Vol 29 (3) ◽

pp. 431-444 ◽

Cited By ~ 2

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).

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Rerum Novarum: Theological Reasoning for the Public Sphere?

Studies in Christian Ethics ◽

10.1177/0953946819869172 ◽

2019 ◽

Vol 32 (4) ◽

pp. 513-526

Author(s):

Amy Daughton

Keyword(s):

Public Sphere ◽

Common Good ◽

Human Flourishing ◽

Catholic Theology ◽

The Public ◽

Living Wages ◽

The Social ◽

Rerum Novarum ◽

The Public Sphere

Contemporary Catholic Social Teaching has increasingly come to bear on the moral and political horizons of our interdependent lives, seeking to address the nature and purpose of our common striving for human flourishing. Frequently, Rerum Novarum is identified as an origin point for CST as a distinctive thread within the deeper tradition of Catholic theology attentive to justice and the common good. The focus on justice in labour practices, especially living wages and social participation, demonstrates its contemporary relevance, but can it contribute to the public debate on such issues, beyond the framework of its particular convictions? This article suggests that Rerum Novarum offers theological reasoning in and for the public sphere by way of its insistence on the social bond as foundation and task; the role of political and cultural plurality in formation and action; and a rich vision of public life as morally participatory for all.

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The Need for a Collective Social Conscience

Global Perspectives ◽

10.1525/gp.2020.17641 ◽

2020 ◽

Vol 1 (1) ◽

Author(s):

Mohamed Nabil Fahmy

Keyword(s):

Common Good ◽

Balance Of Power ◽

Lessons Learned ◽

Global Culture ◽

Social Conscience ◽

The Public ◽

The Common Good ◽

The Social ◽

The Common ◽

Balance Of Interest

As the public orders in the global community, in particular being liberal or illiberal, have lost their “social conscience”, we build on lessons learned to create better circumstances, rather than simply making historic judgements. All while striving to reinvigorate the “social conscience” with a greater sense of collectiveness to provide a more comprehensive order for a new global culture. The goal here is to determine how best to regenerate a wider understanding of the “common good” amongst our societies, and how to ensure that we as “peoples” appreciate and embrace collectiveness and determine that our decisions will increasingly have a greater “social conscience” collectively. In a world of globalization, it is important to understand the interconnectedness of people and systems alike. Decisions built on an understanding of the “common good” and “social conscience” will ultimately have a wider influence on a potential global culture willing to reap benefits of individual assets and achievements. Changing from a “balance of power and authority” driven systems to ones driven by different systems is an attempt to achieve a “balance of interest” is due. A paradigm shift should be in force, whereby marginalization and inequality will be reduced; yet not erased. With this critical juncture in the 21st century, it is imperative to rethink the common good. As well as, reinvigorate the “social conscience” and collective sense which are essential to facing the ever-changing global order.

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LA TEOLOGÍA Y EL ÁMBITO PÚBLICO

Perspectiva Teológica ◽

10.20911/21768757v49n3p631/2017 ◽

2017 ◽

Vol 49 (3) ◽

pp. 631

Author(s):

Kreti Sanhueza Vidal

Keyword(s):

Common Good ◽

The Public ◽

The Common Good ◽

The Social ◽

Public Actor ◽

The Common

RESUMEN: En este escrito se exponen algunos razonamientos acerca del por qué le compete a la Teología intervenir en el ámbito público. Si bien, la relación de la Teología y lo público es algo que ya se está dando, lo importante aquí se busca explicitar qué es lo que fundamenta que la primera no sólo se relacione, sino le sea necesario operar en el ámbito público. En vista de ello, se delimitan algunos principios filosóficos y teológico-cristológicos que sustentan la necesidad que la Teología, en cuanto disciplina, sea considerada un actor público. La teología, tanto por su objeto como por su tarea, debe disponerse a participar en el ámbito público, por cuanto tiene algo que proponer a la convivencia en sociedad y a la búsqueda del bien común.ABSTRACT: This text expounds some reasons about why it is also a concern to Theology to intervene in the public field. Although the relation between Theology and the public field is something that already is given on, the important here is to specify the bases that the first one not only relates to, but is necessary to operate in the public field. In view of this, some philosophical and theologically main elements are delimited to sustain that Theology, as discipline, consider itself as public actor. Theology, with its purpose and its task, must be available to participate in the public field, because it has something to offer in the social coexistence and at the search for the common good.

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Who benefits and how? Public expectations of public benefits from data-intensive health research

Big Data & Society ◽

10.1177/2053951718816724 ◽

2018 ◽

Vol 5 (2) ◽

pp. 205395171881672 ◽

Cited By ~ 4

Author(s):

Mhairi Aitken ◽

Carol Porteous ◽

Emily Creamer ◽

Sarah Cunningham-Burley

Keyword(s):

Health Research ◽

Academic Research ◽

Population Data ◽

Political Support ◽

Vulnerable Groups ◽

The Public ◽

Data Intensive ◽

Public Benefits ◽

Public Expectations ◽

Social License

The digitization of society and academic research endeavours have led to an explosion of interest in the potential uses of population data in research. Alongside this, increasing attention is focussing on the conditions necessary for maintaining a social license for research practices. Previous research has pointed to the importance of demonstrating “public benefits” from research for maintaining public support, yet there has been very little consideration of what the term “public benefits” means or what public expectations of “public benefits” are. In order to address this pressing issue a series of deliberative workshops with members of the public were held across Scotland in May and June 2017. The workshops aimed to engage a cross-section of the Scottish population in in-depth discussions of the ways that the public – or publics – might benefit from data-intensive health research. The findings reported here discuss workshop participants’ understandings and expectations of health research; who they considered to be “the public” that should benefit from health research and; in what ways they felt “the public” should benefit. Workshop participants’ preference was clearly for the widest possible public benefit to be felt by all, but they also acknowledged the value in research aiming to primarily benefit vulnerable groups within society. A key focus of discussions was the extent to which workshop participants were confident that potential public benefits would be realised. A crucial consideration then is the extent to which mechanisms and political support are in place to realise and maximise the public benefits of data-intensive health research.

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Computer Analyses in Preventive Health Research

Methods of Information in Medicine ◽

10.1055/s-0038-1636287 ◽

1967 ◽

Vol 06 (01) ◽

pp. 8-14 ◽

Cited By ~ 11

Author(s):

M. F. Collen

Keyword(s):

Medical Research ◽

Preventive Medicine ◽

Health Research ◽

Large Scale ◽

Preventive Health ◽

New Era ◽

Large Numbers ◽

Normal Test ◽

Computer Analyses

The utilization of an automated multitest laboratory as a data acquisition center and of a computer for trie data processing and analysis permits large scale preventive medical research previously not feasible. Normal test values are easily generated for the particular population studied. Long-term epidemiological research on large numbers of persons becomes practical. It is our belief that the advent of automation and computers has introduced a new era of preventive medicine.

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A Local Area Network for Medical Research; Planning, Realization and Experience

Methods of Information in Medicine ◽

10.1055/s-0038-1634811 ◽

1991 ◽

Vol 30 (01) ◽

pp. 53-64 ◽

Cited By ~ 3

Author(s):

R. Schosser ◽

C. Weiss ◽

K. Messmer

Keyword(s):

Medical Research ◽

Word Processing ◽

Local Area Network ◽

Local Area ◽

Area Network ◽

Test Installation ◽

Cost Performance ◽

The Public ◽

On Line ◽

The University

This report focusses on the planning and realization of an interdisciplinary local area network (LAN) for medical research at the University of Heidelberg. After a detailed requirements analysis, several networks were evaluated by means of a test installation, and a cost-performance analysis was carried out. At present, the LAN connects 45 (IBM-compatible) PCs, several heterogeneous mainframes (IBM, DEC and Siemens) and provides access to the public X.25 network and to wide-area networks for research (EARN, BITNET). The network supports application software that is frequently needed in medical research (word processing, statistics, graphics, literature databases and services, etc.). Compliance with existing “official” (e.g., IEEE 802.3) and “de facto” standards (e.g., PostScript) was considered to be extremely important for the selection of both hardware and software. Customized programs were developed to improve access control, user interface and on-line help. Wide acceptance of the LAN was achieved through extensive education and maintenance facilities, e.g., teaching courses, customized manuals and a hotline service. Since requirements of clinical routine differ substantially from medical research needs, two separate networks (with a gateway in between) are proposed as a solution to optimally satisfy the users’ demands.

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