scholarly journals Public Attitudes Towards Sharing Loyalty Card Data for Academic Health Research: a Qualitative Study

2021 ◽  
Author(s):  
Elizabeth H Dolan ◽  
Kate Shiells ◽  
James Goulding ◽  
Anya Skatova
Keyword(s):  
Data Sharing ◽  
Health Research ◽  
Public Attitudes ◽  
A Priori ◽  
Health Condition ◽  
Research Information ◽  
Academic Health ◽  
The Public ◽  
Willingness To Donate ◽  
Loyalty Card

Abstract Background: A growing number of studies show the potential of loyalty card data for use in health research. However, research into public perceptions of using this data is limited. This study aimed to investigate public attitudes towards donating loyalty card data for academic health research, and the safeguards the public would want to see implemented. The way in which participant attitudes varied according to whether loyalty card data would be used for either cancer or COVID-19 research was also examined. Methods: Participants (N=40) were recruited via Prolific Academic to take part in semi-structured telephone interviews, with questions focused on data sharing related to either COVID-19 or ovarian/bowel cancer as the proposed health condition to be researched. Content analysis was used to identify sub-themes corresponding to the two a priori themes, attitudes and safeguards.Results: Participant attitudes were found to fall into two categories, either rational or emotional. Under rational, most participants were in favour of sharing loyalty card data. Support of health research was seen as an important reason to donate such data, with loyalty card logs being considered as already within the public domain. With increased understanding of research purpose, participants expressed higher willingness to donate data. Within the emotional category, participants shared fears about revealing location information and of third parties obtaining their data. With regards to safeguards, participants described the importance of anonymisation and the level of data detail; the control, convenience and choice they desired in sharing data; and the need for transparency and data security. The change in hypothetical purpose of the data sharing, from Covid-19 to cancer research, had no impact on participants’ decision to donate, although did affect their understanding of how loyalty card data could be used. Conclusions: Based on interviews with the public, this study contributes recommendations for those researchers and the wider policy community seeking to obtain loyalty card data for health research. Whilst participants were largely in favour of donating loyalty card data for academic health research, information, choice and appropriate safeguards are all exposed as prerequisites upon which decisions are made.

scholarly journals Patients’ and public views and attitudes towards the sharing of health data for research: a narrative review of the empirical evidence

2019 ◽  
pp. medethics-2019-105651 ◽  
Author(s):  
Shona Kalkman ◽  
Johannes van Delden ◽  
Amitava Banerjee ◽  
Benoît Tyl ◽  
Menno Mostert ◽  
...  
Keyword(s):  
Empirical Evidence ◽  
Data Sharing ◽  
Health Research ◽  
Public Attitudes ◽  
Health Data ◽  
Narrative Review ◽  
Great Promise ◽  
The Public ◽  
Social License ◽  
Public Views

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.

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 Sharing Government Health Data With the Private Sector: Community Attitudes Survey (Preprint)

2020 ◽  
Author(s):  
Annette Braunack-Mayer ◽  
Belinda Fabrianesi ◽  
Jackie Street ◽  
Pauline O'Shaughnessy ◽  
Stacy M Carter ◽  
...  
Keyword(s):  
Private Sector ◽  
Research And Development ◽  
Health Information ◽  
Data Sharing ◽  
Public Attitudes ◽  
Health Data ◽  
Private Companies ◽  
Web Based ◽  
The Public ◽  
Government Health

BACKGROUND The use of government health data for secondary purposes, such as monitoring the quality of hospital services, researching the health needs of populations, and testing how well new treatments work, is increasing. This increase in the secondary uses of health data has led to increased interest in what the public thinks about data sharing, in particular, the possibilities of sharing with the private sector for research and development. Although international evidence demonstrates broad public support for the secondary use of health data, this support does not extend to sharing health data with the private sector. If governments intend to share health data with the private sector, knowing what the public thinks will be important. This paper reports a national survey to explore public attitudes in Australia toward sharing health data with private companies for research on and development of therapeutic drugs and medical devices. OBJECTIVE This study aims to explore public attitudes in Australia toward sharing government health data with the private sector. METHODS A web-based survey tool was developed to assess attitudes about sharing government health data with the private sector. A market research company was employed to administer the web-based survey in June 2019. RESULTS The survey was completed by 2537 individuals residing in Australia. Between 51.8% and 57.98% of all participants were willing to share their data, with slightly fewer in favor of sharing to improve health services (51.99%) and a slightly higher proportion in favor of sharing for research and development (57.98%). There was a preference for opt-in consent (53.44%) and broad support for placing conditions on sharing health information with private companies (62% to 91.99%). Wide variability was also observed in participants’ views about the extent to which the private sector could be trusted and how well they would behave if entrusted with people’s health information. In their qualitative responses, the participants noted concerns about private sector corporate interests, corruption, and profit making and expressed doubt about the Australian government’s capacity to manage data sharing safely. The percentages presented are adjusted against the Australian population. CONCLUSIONS This nationally representative survey provides preliminary evidence that Australians are uncertain about sharing their health data with the private sector. Although just over half of all the respondents supported sharing health data with the private sector, there was also strong support for strict conditions on sharing data and for opt-in consent and significant concerns about how well the private sector would manage government health data. Addressing public concern about sharing government health data with the private sector will require more and better engagement to build community understanding about how agencies can collect, share, protect, and use their personal data.

scholarly journals Sharing Government Health Data With the Private Sector: Community Attitudes Survey

10.2196/24200 ◽  
2021 ◽  
Vol 23 (10) ◽  
pp. e24200
Author(s):  
Annette Braunack-Mayer ◽  
Belinda Fabrianesi ◽  
Jackie Street ◽  
Pauline O'Shaughnessy ◽  
Stacy M Carter ◽  
...  
Keyword(s):  
Private Sector ◽  
Research And Development ◽  
Health Information ◽  
Data Sharing ◽  
Public Attitudes ◽  
Health Data ◽  
Private Companies ◽  
Web Based ◽  
The Public ◽  
Government Health

Background The use of government health data for secondary purposes, such as monitoring the quality of hospital services, researching the health needs of populations, and testing how well new treatments work, is increasing. This increase in the secondary uses of health data has led to increased interest in what the public thinks about data sharing, in particular, the possibilities of sharing with the private sector for research and development. Although international evidence demonstrates broad public support for the secondary use of health data, this support does not extend to sharing health data with the private sector. If governments intend to share health data with the private sector, knowing what the public thinks will be important. This paper reports a national survey to explore public attitudes in Australia toward sharing health data with private companies for research on and development of therapeutic drugs and medical devices. Objective This study aims to explore public attitudes in Australia toward sharing government health data with the private sector. Methods A web-based survey tool was developed to assess attitudes about sharing government health data with the private sector. A market research company was employed to administer the web-based survey in June 2019. Results The survey was completed by 2537 individuals residing in Australia. Between 51.8% and 57.98% of all participants were willing to share their data, with slightly fewer in favor of sharing to improve health services (51.99%) and a slightly higher proportion in favor of sharing for research and development (57.98%). There was a preference for opt-in consent (53.44%) and broad support for placing conditions on sharing health information with private companies (62% to 91.99%). Wide variability was also observed in participants’ views about the extent to which the private sector could be trusted and how well they would behave if entrusted with people’s health information. In their qualitative responses, the participants noted concerns about private sector corporate interests, corruption, and profit making and expressed doubt about the Australian government’s capacity to manage data sharing safely. The percentages presented are adjusted against the Australian population. Conclusions This nationally representative survey provides preliminary evidence that Australians are uncertain about sharing their health data with the private sector. Although just over half of all the respondents supported sharing health data with the private sector, there was also strong support for strict conditions on sharing data and for opt-in consent and significant concerns about how well the private sector would manage government health data. Addressing public concern about sharing government health data with the private sector will require more and better engagement to build community understanding about how agencies can collect, share, protect, and use their personal data.

Trust in the Police: Cross-country Comparisons

2012 ◽  
pp. 24-47
Author(s):  
V. Gimpelson ◽  
G. Monusova
Keyword(s):  
Public Opinion ◽  
Public Attitudes ◽  
Crime Rates ◽  
Authoritarian Regimes ◽  
Data Sets ◽  
The Public ◽  
Positive Attitudes ◽  
Cross Country ◽  
Police Activity

Using different cross-country data sets and simple econometric techniques we study public attitudes towards the police. More positive attitudes are more likely to emerge in the countries that have better functioning democratic institutions, less prone to corruption but enjoy more transparent and accountable police activity. This has a stronger impact on the public opinion (trust and attitudes) than objective crime rates or density of policemen. Citizens tend to trust more in those (policemen) with whom they share common values and can have some control over. The latter is a function of democracy. In authoritarian countries — “police states” — this tendency may not work directly. When we move from semi-authoritarian countries to openly authoritarian ones the trust in the police measured by surveys can also rise. As a result, the trust appears to be U-shaped along the quality of government axis. This phenomenon can be explained with two simple facts. First, publicly spread information concerning police activity in authoritarian countries is strongly controlled; second, the police itself is better controlled by authoritarian regimes which are afraid of dangerous (for them) erosion of this institution.

A Subtle but Intractable Problem? Public Attitudes to Sectarianism in 2014

2015 ◽  
Vol 24 (3) ◽  
pp. 266-287 ◽  
Author(s):  
Rachel Ormston ◽  
John Curtice ◽  
Stephen Hinchliffe ◽  
Anna Marcinkiewicz
Keyword(s):  
Public Opinion ◽  
Public Attitudes ◽  
Evidence Base ◽  
Social Attitudes ◽  
The Public ◽  
Public Beliefs ◽  
Intractable Problem ◽  
Robust Evidence

Discussion of sectarianism often focuses on evidence purporting to show discriminatory behaviour directed at Catholics or Protestants in Scotland. But attitudes also matter – in sustaining (or preventing) such discriminatory behaviours, and in understanding the nature of the ‘problem of sectarianism’ from the perspective of the Scottish public. This paper uses data from the Scottish Social Attitudes survey 2014. The survey fills a gap in the evidence base by providing robust evidence on what the public actually thinks about sectarianism in modern Scotland. It assesses public beliefs about the extent and nature of sectarianism and its perceived causes. Tensions in public opinion and differences in the attitudes of different sections of Scottish society are explored.

Policy Considerations for the Design and Use of Web Portals for Researchers, Clinicians, and Patients: A Scoping Literature Review (Preprint)

2020 ◽  
Author(s):  
Michael Lang ◽  
Sébastien Lemieux ◽  
Josée Hébert ◽  
Guy Sauvageau ◽  
Ma'n H. Zawati
Keyword(s):  
Patient Care ◽  
Health Research ◽  
Complex Disease ◽  
Patient Empowerment ◽  
Patient Portals ◽  
Research Results ◽  
Online Systems ◽  
The Public ◽  
Online Tools ◽  
Research Findings

BACKGROUND Medical care and health research are jointly undergoing significant changes brought about by the Internet [1,2,3]. New online tools, apps, and programs are helping to facilitate unprecedented levels of data sharing and collaboration, potentially enabling more precisely targeted treatment and rapid research translation [4,5,6]. Patient portals have been a significant part of this emerging online health ecosystem, providing patients a mechanism for accessing electronic health records, managing appointments and prescriptions, even communicating directly with care providers [7]. Much has been written about the technical and ethical challenges associated with the development and integration of patient portals into the clinic [8,9]. But portal technology might also be used to connect health researchers to clinicians, patients, and the public. Online systems could be a useful platform for broadly and rapidly disseminating research results while also promoting patient empowerment. OBJECTIVE The aim of this study is to assess the potential use of online portals that facilitate the sharing of health research findings among researchers, clinicians, patients, and the public. It will also summarize the potential legal, ethical, and policy implications associated with such tools for public use and in the management of patient care for complex disease. METHODS We systematically consulted three databases, PubMed, Scopus, and WestLaw Next for sources describing online portals for sharing health research findings among clinicians, researchers, and patients and their associated legal, ethical, and policy challenges. raised by the integration of online tools into patient care for complex disease. Of 719 source citations, we retained 22 for review. RESULTS We found a varied and inconsistent treatment of online portals for sharing health research findings among clinicians, researchers, and patients. While the literature supports the view that portals of this kind are potentially highly promising, they remain novel and are not yet being widely adopted. We also found a wide-ranging discussion on the legal, ethical, and policy issues related to the use of online tools for sharing research data. We identified five important policy challenges: privacy & confidentiality, health literacy & patient empowerment, equity, training, and decision making. Each of these, we contend, have meaningful implications for the increased integration of online tools into clinical care. CONCLUSIONS As online tools become increasingly important mechanisms for sharing health research with clinicians, patients, and the public, it is vital that these developments are met with ethical and conceptual scrutiny. Therapeutic portals as they are presented in this paper may become a more widespread feature of precision and translational medicine. Our findings suggest that online portals are already being used to disseminate research results among clinicians, patients, and the public. But much of the ethical and conceptual debate is framed in terms of the patient portal, a concept that does not adequately reflect the potentially broader scope of therapeutic portals. It may be useful to clarify this distinction in future research and to underscore the unique ethical, legal, and policy challenges raised when online systems are used as a platform for disseminating research to as wide an audience as possible. CLINICALTRIAL n/a

scholarly journals Attitudes and willingness toward out-of-hospital cardiopulmonary resuscitation: a questionnaire study among the public trained online in China

BMJ Open ◽  
2020 ◽  
Vol 10 (10) ◽  
pp. e038712
Author(s):  
Yi Jiang ◽  
Bangsheng Wu ◽  
Long Long ◽  
Jiaxing Li ◽  
Xiaoqing Jin
Keyword(s):  
Cardiopulmonary Resuscitation ◽  
Disease Transmission ◽  
Public Attitudes ◽  
Online Training ◽  
First Aid ◽  
The Public ◽  
Close Family Member ◽  
Positive Attitudes ◽  
Bystander Cardiopulmonary Resuscitation ◽  
Cpr Training

ObjectivesThe incidence of bystander cardiopulmonary resuscitation (CPR) is low in China. CPR training could improve public attitudes and willingness, but at present, the attitudes of the public after online training are unclear. This study investigated individual attitudes towards CPR, the willingness to perform it in emergencies along with the main obstacles and the overall effects of online training.DesignQuestionnaires were distributed to investigate the public attitudes and willingness towards performing bystander CPR.SettingQuestionnaires were accessible after the online course ‘First Aid’.Participants1888 students who attended ‘First Aid’ from December 2019 to 1 January 2020 and then completed the questionnaire voluntarily.ResultsThe majority understood CPR (96.7%) and displayed a willingness to learn (98.4%) and to disseminate CPR knowledge (82.0%). Characteristics associated with more positive attitudes included women, the 26–35-year olds and those in medical-related occupations (p<0.05). Only 34.8% had CPR training before. Most people would willingly perform CPR on a close family member. Compared with the standard CPR (S-CPR), the public preferred chest compression-only CPR (CO-CPR) (p<0.01). The top three obstacles to performing CO-CPR were lack of confidence (26.7%), fear of harming the victim (23.4%) and causing legal trouble (20.7%), while regarding S-CPR, fear of disease transmission (22.9%) ranked second. Women, those in poor health and in medical-related occupations, were more likely to perform CPR (p<0.05). The confidence to perform CPR was improved remarkably after online training (p<0.05).ConclusionsThe overwhelming majority of respondents showed positive attitudes and willingness towards CPR. In some cases, there is still reluctance, especially towards S-CPR. Obstacles arise mainly due to lack of confidence in administering CPR, while online CPR training can markedly improve it. Therefore, we should focus on disseminating CPR knowledge, targeting those who are less willing to perform CPR and helping overcome their obstacles by online training.

scholarly journals Benchmarking Crisis in Social Media Analytics: A Solution for the Data-Sharing Problem

2021 ◽  
pp. 089443932110122
Author(s):  
Dennis Assenmacher ◽  
Derek Weber ◽  
Mike Preuss ◽  
André Calero Valdez ◽  
Alison Bradshaw ◽  
...  
Keyword(s):  
Social Media ◽  
Data Sharing ◽  
Algorithm Design ◽  
Computational Social Science ◽  
Evaluation Framework ◽  
Social Media Analytics ◽  
Data Sets ◽  
The Public ◽  
Research Areas ◽  
Media Data

Computational social science uses computational and statistical methods in order to evaluate social interaction. The public availability of data sets is thus a necessary precondition for reliable and replicable research. These data allow researchers to benchmark the computational methods they develop, test the generalizability of their findings, and build confidence in their results. When social media data are concerned, data sharing is often restricted for legal or privacy reasons, which makes the comparison of methods and the replicability of research results infeasible. Social media analytics research, consequently, faces an integrity crisis. How is it possible to create trust in computational or statistical analyses, when they cannot be validated by third parties? In this work, we explore this well-known, yet little discussed, problem for social media analytics. We investigate how this problem can be solved by looking at related computational research areas. Moreover, we propose and implement a prototype to address the problem in the form of a new evaluation framework that enables the comparison of algorithms without the need to exchange data directly, while maintaining flexibility for the algorithm design.

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