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.

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 Community Attitudes Towards Sharing Government Health Data with Private Companies: A Scoping Review

2020 ◽  
Vol 5 (5) ◽  
Author(s):  
Jackie Street ◽  
Belinda Fabrianesi ◽  
Rebecca Bosward ◽  
Stacy Carter ◽  
Annette Braunack-Mayer
Keyword(s):  
Data Sharing ◽  
Health Care Providers ◽  
Scoping Review ◽  
Public Attitudes ◽  
Health Data ◽  
Public Confidence ◽  
Care Providers ◽  
Private Industry ◽  
Good Communication ◽  
Government Health

IntroductionLarge volumes of health data are generated through the interaction of individuals with hospitals, government agencies and health care providers. There is potential in the linkage and sharing of administrative data with private industry to support improved drug and device provision but data sharing is highly contentious. Objectives and ApproachWe conducted a scoping review of quantitative and qualitative studies examining public attitudes towards the sharing of health data, held by government, with private industry for research and development. We searched four data bases, PubMed, Scopus, Cinahl and Web of Science as well as Google Scholar and Google Advanced. The search was confined to English-only publications since January 2014 but was not geographically limited. We thematically coded included papers. ResultsWe screened 6788 articles. Thirty-six studies were included primarily from UK and North America. No Australian studies were identified. Across studies, willingness to share non-identified data was generally high with the participant’s own health provider (84-91%) and academic researchers (64-93%) but fell if the data was to be shared with private industry (14-53%). There was widespread misunderstanding of the benefits of sharing data for health research. Publics expressed concern about a range of issues including data security, misuse of data and use of data to generate profit. Conditions which would increase public confidence in sharing of data included: strict safeguards on data collection and use including secure storage, opt-in or opt-out consent mechanisms, and good communication through trusted agents. Conclusion / ImplicationsWe identified a research gap: Australian views on sharing government health data with private industry. The international experience suggests that public scepticism about data sharing with private industry will need to be addressed by good communication about public benefit of data sharing, a strong program of public engagement and information sharing conducted through trusted entities.

scholarly journals Mhealth

2018 ◽  
Vol 80 (3) ◽  
pp. 61-62
Author(s):  
Jeannette Herrle
Keyword(s):  
Health Care ◽  
Health Information ◽  
Health Data ◽  
Daily Lives ◽  
Web Based ◽  
Institutional Control ◽  
The Public ◽  
Access To Health ◽  
People’S Daily ◽  
Digital Modality

Web-based applications (email, websites, portals) have long been the favoured digital modality for interacting with the public in health care, in part because they enable institutional control of the flow of health data. But today, smartphones are becoming the default portal in many people’s daily lives. Their presence is increasingly felt in health care, whether as a means of connecting patients with practitioners or satisfying a desire for instant access to health information.

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 Mental health professionals’ perceptions on patients control of data sharing

2020 ◽  
Vol 26 (3) ◽  
pp. 2011-2029 ◽  
Author(s):  
Julia Ivanova ◽  
Adela Grando ◽  
Anita Murcko ◽  
Michael Saks ◽  
Mary Jo Whitfield ◽  
...  
Keyword(s):  
Mental Health ◽  
Health Information ◽  
Data Sharing ◽  
Mental Health Professionals ◽  
Health Professionals ◽  
Health Care Professionals ◽  
Health Data ◽  
Structured Interviews ◽  
Timely Access ◽  
The Impact

Integrated mental and physical care environments require data sharing, but little is known about health professionals’ perceptions of patient-controlled health data sharing. We describe mental health professionals’ views on patient-controlled data sharing using semi-structured interviews and a mixed-method analysis with thematic coding. Health information rights, specifically those of patients and health care professionals, emerged as a key theme. Behavioral health professionals identified patient motivations for non-sharing sensitive mental health records relating to substance use, emergency treatment, and serious mental illness (94%). We explore conflicts between professional need for timely access to health information and patient desire to withhold some data categories. Health professionals’ views on data sharing are integral to the redesign of health data sharing and informed consent. As well, they seek clarity about the impact of patient-controlled sharing on health professionals’ roles and scope of practice.

Public Access to Environmental Information Held by Private Companies

2012 ◽  
Vol 14 (1) ◽  
pp. 7-25 ◽  
Author(s):  
Uzuazo Etemire
Keyword(s):  
Private Sector ◽  
Environmental Information ◽  
Public Access ◽  
Paper Briefly ◽  
Public Authorities ◽  
Private Companies ◽  
England And Wales ◽  
The Public ◽  
Utility Companies ◽  
Water Companies

The pervading thought in England and Wales has been that private utility companies such as water-only companies (WOCs) and water and sewage companies (WASCs) were public authorities under the 2004 Environmental Information Regulations (EIR) and so were subject to the regime. However, on 23 November 2010, on appeal, the Upper Tribunal delivered a judgment in the case of Smartsource Drainage & Water Report Ltd v The Information Commissioner and 19 Water Companies to the effect that WOCs and WASCs were not public authorities under the EIR. This decision potentially puts certain important environmental information out of public reach in England and Wales. This paper briefly addresses the contextual issues of the advancement of the public's right to access environmental information into the domain of the private sector and why the public needs to be able to access environmental information directly from private companies and not just from government regulators. Primarily, however, this paper reinforces the case for wide public access to environmental information held by private companies mainly through counter-arguments raised to demonstrate the lack of purposive and contextual interpretation by the Upper Tribunal, in the Smartsource case, of the relevant provisions of the EIR (i.e., Regulation 2(2)(c) and (d)). It concludes with a possible legislative solution to help clarify the import of the relevant EIR provision.

A web-based survey of attitudes toward epilepsy in secondary and tertiary students in Malaysia, using the Public Attitudes Toward Epilepsy (PATE) scale

2013 ◽  
Vol 26 (2) ◽  
pp. 158-161 ◽  
Author(s):  
Kheng Seang Lim ◽  
Michael D. Hills ◽  
Wan Yuen Choo ◽  
Mee Hoo Wong ◽  
Cathie Wu ◽  
...  
Keyword(s):  
Public Attitudes ◽  
Web Based ◽  
The Public

scholarly journals Psychological Influence towards Health Consumers Intention to use A Malaysia National Web based Health Information Service

2018 ◽  
Vol 3 (7) ◽  
pp. 167
Author(s):  
Siti Noraini Mohd Tobi ◽  
Maslin Masrom ◽  
Erne Suzila Kassim ◽  
Yap Bee Wah
Keyword(s):  
Health Information ◽  
Information Service ◽  
Health Belief ◽  
Outcome Expectations ◽  
Measurement Model ◽  
Web Based ◽  
The Public ◽  
Psychological Influence ◽  
Belief Model

Drawing upon Health Belief Model, the study investigated the psychological predictors that determine the usage intention of the Malaysian web-based health information service, MyHEALTH Portal. The results of the measurement model show the evidences of outcome expectations and internal cues as the predictors to the portal usage, while external cues was found to be insignificant. The findings would help the Malaysia Ministry of Health in identifying significant psychological factors that influence the portal usage. This would allow them to re-strategize the portal’s marketing and promotional works effectively thus to be maximally used by the public while achieving its long-term goal.

scholarly journals Actions that Combat the Disruption of the Moral and Social Code with the Purpose of Favoritism

2015 ◽  
Vol 16 (29) ◽  
pp. 1-4
Author(s):  
Sergio Armando Prado De Toledo
Keyword(s):  
Criminal Justice ◽  
Public Sector ◽  
Private Sector ◽  
Public Administration ◽  
Private Companies ◽  
Public And Private ◽  
The Public ◽  
Social Code ◽  
Public And Private Sector ◽  
Reduction Of Costs

Abstract Currently, corruption has been so generalized and sophisticated that threatens to undermine the own society structure. Corruption is a problem identified in all the countries. What changes is how we deal with it. Nevertheless, why is there so much corruption? Within the group of factors, it is possible to highlight the high bureaucracy that reduces the efficiency of the public administration; the presence of a slow Judiciary Branch which is very low is terms of efficiency, when reprimanding illicit practices that incite everything ending up in pizza (this sentence was literally translated from Portuguese, it does not exist in English, but it means that impunity prevails in Brazil.); the existence of a corporatist sense among the Administration industries in the public sector in relation to the private sector and so facilitating corruption. The penalty for corruption should be constrained to mechanisms that allow the system of criminal justice to carry out actions of arrest, prosecution, penalty and repair to the country. Combating corruption complies with the republican ideal for the reduction of costs in Brazil. Moralizing the public-private relations offers juridical security to the market. The fact that some countries, especially Brazil, are seriously combating against corruption brings hope, with an eye on a more rigid legislation and less bureaucratic as well, with the end of the corporatist sense and the equivalence of salaries between the public and private sector. We shall provide effective criminal, administrative and civil penalties of inhibiting nature for future action; we shall provide cooperation between the law applicator and the private companies; we shall prevent the conflict of interests; we shall forbid the existence of “black fund” at the companies and we shall encouraged the relief or reduction of taxes to expenses considered as bribery or other conducts related

scholarly journals Health Consumers’ Daily Habit of Internet Banking Use as a Proxy for Understanding Health Information Sharing Behavior: Quasi-Experimental Approach (Preprint)

2019 ◽  
Author(s):  
Hyeyoung Hah
Keyword(s):  
Health Care ◽  
Information Sharing ◽  
Health Information ◽  
Information Management ◽  
Health Data ◽  
Financial Information ◽  
Web Based ◽  
Health Consumers ◽  
Health Information Sharing ◽  
Sharing Behavior

BACKGROUND As the US health care system is embracing data-driven care, personal health information (PHI) has become a valuable resource for various health care stakeholders. In particularly, health consumers are expected to autonomously manage and share PHI with their health care partners. To date, there have been mixed views on the factors influencing individuals’ health data–sharing behaviors. OBJECTIVE This study aimed to identify a key factor to better understand health information sharing behavior from a health consumer’s perspective. We focused on daily settings, wherein health data–sharing behavior becomes a part of individuals’ daily information management activities. Considering the similarity between health and finance information management, we explicitly examined whether health consumers’ daily habit of similar data sharing from the financial domain affects their PHI-sharing behaviors in various scenarios. METHODS A Web-based survey was administered to US health consumers who have access to and experience in using the internet. We collected individual health consumers’ intention to share PHI under varying contexts, habit of financial information management (operationalized as internet banking [IB] use in this paper), and the demographic information from the cross-sectional Web-based survey. To isolate the effect of daily IB on PHI-sharing behaviors in everyday contexts, propensity score matching was used to estimate the average treatment effect (ATE) and average treatment effect on the treated (ATET) regarding IB use. We balanced the treatment and control groups using caliper matching based on the observed confounding variables (ie, gender, income, health status, and access to primary care provider), all of which resulted in a minimal level of bias between unmatched and matched samples (bias &lt;5%). RESULTS A total of 339 responses were obtained from a cross-sectional Web-based survey. The ATET results showed that in terms of sharing contents, those who used IB daily were more likely to share general information (<italic>P</italic>=.01), current information (<italic>P</italic>=.003), and entire data (<italic>P</italic>=.04). Regarding occasions for sharing occasions, IB users were prone to share their information in all cases (<italic>P</italic>=.02). With regard to sharing recipients, daily IB users were more willing to share their personal health data with stakeholders who were not directly involved in their care, such as health administrators (<italic>P</italic>=.05). These results were qualitatively similar to the ATE results. CONCLUSIONS This study examined whether daily management of similar information (ie, personal financial information) changes health consumers’ PHI-sharing behavior under varying sharing conditions. We demonstrated that daily financial information management can encourage health information sharing to a much broader extent, in several instances, and with many stakeholders. We call for more attention to this unobserved daily habit driven by the use of various nonhealth technologies, all of which can implicitly affect patterns and the extent of individuals’ PHI-sharing behaviors.

Sign in / Sign up

Export Citation Format

Share Document