scholarly journals “Giving something back”: A systematic review and ethical enquiry into public views on the use of patient data for research in the United Kingdom and the Republic of Ireland

2019 ◽  
Vol 3 ◽  
pp. 6 ◽  
Author(s):  
Jessica Stockdale ◽  
Jackie Cassell ◽  
Elizabeth Ford
Keyword(s):  
Common Good ◽  
Public Attitudes ◽  
Good Practice ◽  
Patient Data ◽  
Service Planning ◽  
Biomedical Ethics ◽  
Public Understanding ◽  
Framework Analysis ◽  
The Public ◽  
Public Views

Background: Use of patients’ medical data for secondary purposes such as health research, audit, and service planning is well established in the UK. However, the governance environment, as well as public understanding about this work, have lagged behind. We aimed to systematically review the literature on UK and Irish public views of patient data used in research, critically analysing such views though an established biomedical ethics framework, to draw out potential strategies for future good practice guidance and inform ethical and privacy debates.Methods: We searched three databases using terms such as patient, public, opinion, and electronic health records. Empirical studies were eligible for inclusion if they surveyed healthcare users, patients or the public in UK and Ireland and examined attitudes, opinions or beliefs about the use of patient data for medical research. Results were synthesised into broad themes using a framework analysis.Results: Out of 13,492 papers and reports screened, 20 papers or reports were eligible. While there was a widespread willingness to share patient data for research for the common good, this very rarely led to unqualified support. The public expressed two generalised concerns about the potential risks to their privacy. The first of these concerns related to a party’s competence in keeping data secure, while the second was associated with the motivation a party might have to use the data.Conclusions: The public evaluates trustworthiness of research organisations by assessing their competence in data-handling and motivation for accessing the data. Public attitudes around data-sharing exemplified several principles which are also widely accepted in biomedical ethics. This provides a framework for understanding public attitudes, which should be considered in the development in any guidance for regulators and data custodians. We propose four salient questions which decision makers should address when evaluating proposals for the secondary use of data

scholarly journals “Giving something back”: A systematic review and ethical enquiry of public opinions on the use of patient data for research in the United Kingdom and the Republic of Ireland

2018 ◽  
Vol 3 ◽  
pp. 6 ◽  
Author(s):  
Jessica Stockdale ◽  
Jackie Cassell ◽  
Elizabeth Ford
Keyword(s):  
Public Opinion ◽  
Common Good ◽  
Public Attitudes ◽  
Good Practice ◽  
Medical Data ◽  
Patient Data ◽  
Service Planning ◽  
Biomedical Ethics ◽  
Public Opinions ◽  
The Public

Background: Use of medical data for secondary purposes such as health research, audit, and service planning is well established in the UK. However, the governance environment, as well as public opinion and understanding about this work, have lagged behind. We aimed to systematically review the literature on UK and Irish public opinions of medical data use in research, critically analysing such opinions though an established biomedical ethics framework, to draw out potential strategies for future good practice guidance and inform ethical and privacy debates.Methods: We searched three databases using terms such as patient, public, opinion, and electronic health records. Empirical studies were eligible for inclusion if they surveyed healthcare users, patients or the wider public in UK and Ireland and examined attitudes, opinions or beliefs about the use of patient data for medical research. Results were synthesised into broad themes using a Framework Analysis.Results: Out of 13,492 papers and reports screened, 20 papers or reports were eligible. While there was a widespread willingness to share EHRs for research for the common good, this very rarely led to unqualified support. The public expressed two generalised concerns through a variety of hypothetical examples. The first of these concerns related to a party’s competence in keeping data secure, while the second was associated with the motivation a party might have to use the data.Conclusions: The public evaluates trustworthiness of research organisations by assessing their competence in data-handling and motivation for accessing the data. Public attitudes around data-sharing exemplified several principles which are also widely accepted in biomedical ethics. This provides a framework for understanding public attitudes, which should be considered in the development in any guidance for regulators and data custodians. We propose four salient questions which data guardians should address when evaluating proposals for the secondary use of data.

scholarly journals Chinese views on nuclear weapons: Evidence from an online survey

2021 ◽  
Vol 8 (3) ◽  
pp. 205316802110328
Author(s):  
Naomi Egel ◽  
R. Lincoln Hines
Keyword(s):  
Nuclear Weapons ◽  
Text Analysis ◽  
Online Survey ◽  
Public Attitudes ◽  
Age Groups ◽  
Computer Assisted ◽  
The Public ◽  
Self Defense ◽  
Public Views ◽  
Chinese Public

What are Chinese public attitudes regarding nuclear weapons? Although scholars have studied Chinese elites’ views on nuclear weapons, surprisingly little is known about the views of China’s public. To understand Chinese public views on nuclear weapons, we conduct an online survey ( N = 1066) of Chinese respondents. This is, to our knowledge, the first survey of Chinese public attitudes towards nuclear weapons. We find that although Chinese citizens view the possession of nuclear weapons as important for their country’s security, they strongly oppose the use of nuclear weapons under any circumstances. We also provide respondents an opportunity to describe their views on nuclear weapons in their own words. Using computer-assisted text analysis, we assess patterns in these open-ended responses and compare across age groups. We find that younger respondents emphasize non-material factors such as having a greater voice internationally, whereas older respondents emphasize self-defense. Overall, this analysis sheds light on the public attitudes that may shape China’s evolving approach to nuclear weapons.

scholarly journals Public awareness and their attitudes toward adopting renewable energy technologies in Afghanistan

2021 ◽  
Vol 4 (2) ◽  
pp. 82-91
Author(s):  
Mohammad Hamed Patmal ◽  
Habiburrahman Shiran
Keyword(s):  
Renewable Energy ◽  
Public Awareness ◽  
Public Attitudes ◽  
Electrical Energy ◽  
Public Understanding ◽  
Government Policies ◽  
The Public ◽  
Renewable Energy Technologies ◽  
Energy Technologies ◽  
The Government

This research investigates the factors that potentially affect public attitudes and their adoption of renewable energy technologies for electrical energy production in Afghanistan. The study is carried out with a survey from Kabul and its neighboring provinces including Logar, Maidan Wardak, Nangarhar, Ghazni, Parwan & Kapisa provinces. We used a random sampling process to collect data using a web-based questionnaire. The survey was well designed to highlight conveniently the public understanding, willingness, and attitudes toward adopting renewable energy technologies (RETs). The outcome of the survey is then evaluated to discover the most potential factor affecting public acceptance of RETs. The results declared that the educational level, expertise in RETs, and income of respondents are positively related, while the age of respondents is negatively related to the public willingness on the use and investment in RETs. The majority of respondents have used one type of RETs, however, 23 % of respondents have not used any type of RETs. Study shows that the RETs use and access to grid electricity are reversely related, where the access is lower, the RETs use is higher and vice versa. Most of the respondents were not well informed and most disagreed with the government policies on RETs, therefore, public awareness programs on RETs and government policies are recommended. The majority of respondents were willing to invest in RETs, therefore, the government should commit itself and support private sectors to invest in RETs and take part in its development.

scholarly journals Public Attitudes Towards Multiculturalism and Interculturalism in Australia

2020 ◽  
Author(s):  
Amanuel Elias ◽  
Fethi Mansouri ◽  
Reem Sweid
Keyword(s):  
National Survey ◽  
Public Attitudes ◽  
Public Understanding ◽  
Policy Debate ◽  
Policy And Practice ◽  
The Public ◽  
Complementarity Approach ◽  
New Phase ◽  
Different Levels

Abstract The growing intellectual and policy debate around optimal approaches to diversity governance, particularly in relation to criticism of multiculturalism, is now entering a new phase characterised by advocating alternative conceptual and policy paradigms most notably interculturalism. Proposing a conceptual complementarity approach, rather than dogmatically oppositional stances, this paper approaches interculturalism as offering heuristic additive values to multiculturalism. As the paper shows, the Australian context indeed offers an optimal case study for conceptualising and engaging with interculturalism within an otherwise resilient multicultural framework. Australia’s unique and strong multicultural ethos has combined with successful intercultural strategies at different levels of diversity governance, policy and practice across various sectoral terrains. This paper uses an online national survey to examine the public understanding of and attitudes towards multiculturalism and interculturalism as supposedly distinct yet interconnected policy tools relating to the ever-changing diversity governance agenda.

Policing Diversity — Managing Complaints against the Police

2002 ◽  
Vol 75 (2) ◽  
pp. 117-135 ◽  
Author(s):  
Peter C Kennison
Keyword(s):  
Public Attitudes ◽  
Good Practice ◽  
Easy Access ◽  
Police Misconduct ◽  
Critical Perspective ◽  
The Public ◽  
Police Accountability ◽  
Police Deviance ◽  
Civil Libertarian ◽  
Police Practices

This study takes a critical perspective in examining public attitudes towards police stop-and-search powers and, more particularly, police misconduct. It shows how police accountability works through the formal and complex system of complaints against police. It shows a system designed to favour the police against the citizen. In the eyes of some citizens this has tended to reduce the legitimacy of the complaints process, which has led to its under use. Certain police practices and services appear to impact more on diverse sections of the public than it does on the white community. It shows how aberrant police behaviour exposes some of the sociological issues such as black over-representation in public dissatisfaction and complaint statistics. The research also highlights the hidden figure of police deviance and misconduct. This study acknowledges future changes in complaints management proposed by the Home Secretary, David Blunkett MP. However, these proposals do not appear to go far enough. The complaints process is beset with a number of significant problems which include inaccessibility, complication and inequality. The study suggests, as the way forward, a model of ‘good practice’ using a pragmatic approach, which is customer-focused and overcomes many of the problems that allow for easy access, simplification and informality. The principle of civil libertarian ideals prevails, satisfying the legal notion, ‘justice must not only be done but must be seen to be done’.

Ultimate Sovereignty and the Flexibility of the Islamic Caliphate/Democracy

2021 ◽  
Vol 1 (2) ◽  
pp. 313-322
Author(s):  
Mujtaba Isani
Keyword(s):  
Political Thought ◽  
Public Attitudes ◽  
Popular Sovereignty ◽  
The Public ◽  
Islamic Political Thought ◽  
Book Covers ◽  
Public Views ◽  
Modern Era ◽  
Practical Implications

Abstract March’s exceptional book profoundly deals with the ideas of popular sovereignty and the Caliphate in modern Islamic political thought. While this book covers the concept of popular sovereignty in quite detail, March’s portrayal fails to convince the reader whether or not Islamic democracies are possible as a result. Based on previous work on medieval Islamic political thought and public attitudes towards the Caliphate, I argue that conceptions of Islamic government have differed according to context, place and time, and in the modern era the public views the Caliphate as a vehicle for justice and welfare. This implies that Islamic government can still be broadly based on the principles of modern Islamic political thought while the exact institutional configurations may still be able to differ according to place, time and context. In conclusion, while March’s book carefully synthesizes the theoretical debates, it might not have far-reaching practical implications for Islamic democracy.

scholarly journals Getting animated about routine data: co-producing a video and toolkit with young families

2018 ◽  
Vol 3 (4) ◽  
Author(s):  
Fiona Lugg-Widger ◽  
Jeremy Segrott ◽  
Peter Gee ◽  
Joyce Kenkre ◽  
Mike Robling
Keyword(s):  
Child Protection ◽  
Home Visiting ◽  
Social Care ◽  
Data Use ◽  
Routine Data ◽  
Public Understanding ◽  
Sensitive Data ◽  
The Public ◽  
Health And Social Care ◽  
Public Views

IntroductionWhile public engagement activity in healthcare may include a focus on uses of patient data, use of social care/ education data may be relatively overlooked. The public may be less aware about how their social care data may be used. Some concepts such as benefits and risks may also differ. Objectives and ApproachOur objective is to co-produce with members of the public a package of materials that researchers may then use to promote public understanding of and engagement in research that uses routine data from health and social care settings. We are running workshops with two groups of young families (teenage mothers, some of whom have received specialist home-visiting support) to explore key concepts and messages about routine data use, including sensitive data such as maltreatment and regulatory child protection interventions. The workshop includes completing a story board for an animated video. This will be co-produced by the same young people. ResultsOur recent work with young families has shown a preference for visual based methods over text-based approaches to explain routine data linkage. This represents a key opportunity for innovation. We have explored how members of the public understand and make sense of routine data from various settings (health/social care) and its use in research. Working with a professional animator, the co-production of a prototype animation aims to engage members of the public about the nature, benefits and safeguards of using routine public records in health and social care research. The presentation will summarise the method of co-production, review the prototype animation and associated materials for researchers (‘toolkit’). Finally, we will recap key messages identified from the workshops that underpin the animation and other dissemination plans. Conclusion/ImplicationsOur existing understanding of public views (e.g. from consumer panels) may not represent well perspectives from population groups, such as teenage parents. Working with young families who may otherwise rarely engage in such work provides their unique perspectives, adding richness to our understanding of public views on routine data usage.

OP79 Improving Public Understanding Of Scottish Medicines Consortium Advice

2019 ◽  
Vol 35 (S1) ◽  
pp. 20-20
Author(s):  
Jennifer Dickson ◽  
Louise Taylor ◽  
Jackie McCormack ◽  
Noreen Downes ◽  
Lindsay Lockhart ◽  
...  
Keyword(s):  
Development Process ◽  
Public Involvement ◽  
Good Practice ◽  
Public Understanding ◽  
Advisory Group ◽  
The Public ◽  
Independent Review ◽  
Patient Groups ◽  
Multi Stakeholder ◽  
Answer Format

IntroductionTransparency of processes and decision making is important to the Scottish Medicines Consortium (SMC). An independent review of access to new medicines in Scotland in 2016 recommended that SMC should review its communication of decisions with a view to achieving greater transparency. SMC therefore began to develop plain English summaries of advice on each new medicine.MethodsA multi-stakeholder approach was adopted to develop the summary documents, with patient groups involved. Firstly, a review of communications for the public from other HTA organizations was conducted. The public involvement team then held a workshop to find out what patient groups felt would be important to include when explaining SMC decisions to patients and the public. The process was also informed by reviewing examples of good practice from other parts of NHSScotland, including patient versions of Scottish Intercollegiate Guidelines Network (SIGN) clinical guidelines. Exemplar documents were then developed and feedback sought from the Public Involvement Network Advisory Group.ResultsA format was developed for the SMC ‘Decision Explained’ summaries consisting of a question and answer format for each medicine decision in a two page document. The summaries were piloted internally over a six month period, during which the development process and layout were finalized. Since September 2018 these summaries have been published on the website alongside the technical advice.ConclusionsPartnership working between SMC and patient groups has helped to develop a new way of communicating SMC's decisions to patients and the public in a clear way, helping to improve transparency and understanding. Evaluation of the summaries will be undertaken from six months of publication.

scholarly journals Public Attitudes toward Biobanking of Human Biological Material for Research Purposes: A Literature Review

2019 ◽  
Vol 16 (12) ◽  
pp. 2209 ◽  
Author(s):  
Domaradzki ◽  
Pawlikowski
Keyword(s):  
Thematic Analysis ◽  
Biological Material ◽  
Public Attitudes ◽  
Social Attitudes ◽  
Public Knowledge ◽  
The Public ◽  
The Past ◽  
Willingness To Donate ◽  
Public Views ◽  
Human Biological Material

Background: During the past few decades there has been a growing interest on the part of many governments in the creation of biobanks. Nevertheless, this would be impossible without participation of many donors who offer samples of their biological material for scientific research. Therefore, the aim of this paper is to provide an overview of the existing research on social attitudes towards biobanking. Material and Methods: A literature search was conducted in the database of MEDLINE (PubMed). 61 papers were included in the analysis. The retrieved articles were assessed using a thematic analysis. Results: Eight main themes were identified: (1) public knowledge about biobanks, (2) public views on biobanking, (3) willingness to donate, (4) donors’ motivations, (5) perceived benefits and risks of biobanking, (6) preferred type of consent, (7) trust toward biobanks, and (8) demographic characteristics of potential donors. Conclusions: Although the public lacks knowledge about biobanking, many individuals declare willingness to donate. Their will is influenced by: their knowledge about biobanking, the type of donated tissue, research purpose, concerns over the safety of the data, preferred type of consent, and trust towards biobanks.

scholarly journals Evaluating Public Attitudes and Farmers’ Beliefs towards Climate Change Adaptation: Awareness, Perception, and Populism at European Level

Land ◽  
2018 ◽  
Vol 8 (1) ◽  
pp. 4 ◽  
Author(s):  
Sandra Ricart ◽  
Jorge Olcina ◽  
Antonio Rico
Keyword(s):  
Climate Change ◽  
Meteorological Data ◽  
Public Attitudes ◽  
Public Understanding ◽  
Social Forces ◽  
Adaptation To Climate Change ◽  
Natural Systems ◽  
The Public ◽  
The Media

The scientific understanding of climate change is firmly established; it is occurring, it is primarily due to human activities, and it poses potentially serious risks to human and natural systems. Nevertheless, public understanding of this phenomenon varies widely among farmers and the public, the two-target audience of this paper. This paper introduces two research questions: (1) How climate change is perceived by public-farmers’ nexus; and (2) How perception and populism (as a thin-ideology moved by social forces) interact? In order to address both questions, we review insights from different sources (literature, research projects, and public opinion services) over the last 10 years. The results proved how public experience of climate change is interdependent with the belief that climate change is happening. What is also notable is that the greater the years of farmers’ farming experiences, the greater the percentage rate of their climate change awareness. Differences among farmers and public perceptions were also noted. Uncertainty, coupled with skepticism, the media, and political will, are common findings when asking to farmers and the public for the main weaknesses in adaptation to climate change. However, scientific consensus, meteorological data, barriers to adaptation, and the role of technology are subjects in which both differ.

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