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

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.

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

10.2196/preprints.24200 ◽

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.

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Building robust and ethical vaccination verification systems

10.31219/osf.io/x2ucp ◽

2020 ◽

Author(s):

Baobao Zhang ◽

Laurin Weissinger ◽

Johannes Himmelreich ◽

Nina McMurry ◽

Tiffany Li ◽

...

Keyword(s):

Health Care ◽

Data Sharing ◽

Health Care Providers ◽

Health Data ◽

Ethical Principles ◽

Educational Institutions ◽

Care Providers ◽

Verification Systems

As countries begin to vaccinate their populations against COVID-19, creating systems to verify vaccine records will be vital to reopening businesses, educational institutions, and travel. We consider the challenges of building vaccine record verification (VRV) systems that involve data sharing by health care providers, methods for verifying vaccine records, and regulation of how entities (e.g., workplaces, schools, businesses, and airlines) may request proof of vaccination. In particular, we focus on the opportunities and risks associated with digital vaccine passport apps. We propose three ethical principles to guide the building of VRV systems: 1) aligning systems with vaccine prioritization, 2) upholding fairness and equity, and 3) building trustworthy technology that protects the public's health data.

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

Journal of Medical Internet Research ◽

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.

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A Scoping Review and Content Analysis of Common Depressive Symptoms of Young People

The Journal of School Nursing ◽

10.1177/10598405211012680 ◽

2021 ◽

pp. 105984052110126

Author(s):

Jia-Wen Guo ◽

Brooks R. Keeshin ◽

Mike Conway ◽

Wendy W. Chapman ◽

Katherine A. Sward

Keyword(s):

Content Analysis ◽

Depressive Symptoms ◽

Young People ◽

Health Care Providers ◽

Scoping Review ◽

School Nurses ◽

Future Research ◽

Depression Symptom ◽

Care Providers ◽

Five Dimensions

School nurses are the most accessible health care providers for many young people including adolescents and young adults. Early identification of depression results in improved outcomes, but little information is available comprehensively describing depressive symptoms specific to this population. The aim of this study was to develop a taxonomy of depressive symptoms that were manifested and described by young people based on a scoping review and content analysis. Twenty-five journal articles that included narrative descriptions of depressive symptoms in young people were included. A total of 60 depressive symptoms were identified and categorized into five dimensions: behavioral ( n = 8), cognitive ( n = 14), emotional ( n = 15), interpersonal ( n = 13), and somatic ( n = 10). This comprehensive depression symptom taxonomy can help school nurses to identify young people who may experience depression and will support future research to better screen for depression.

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Attitudes toward Health Systems Financing in Chile

INQUIRY The Journal of Health Care Organization Provision and Financing ◽

10.1177/00469580211020187 ◽

2021 ◽

Vol 58 ◽

pp. 004695802110201

Author(s):

Pablo A. González ◽

Laura L. Gutiérrez ◽

Juan Carlos Oyanedel ◽

Héctor Sánchez-Rodríguez

Keyword(s):

Health Systems ◽

Health Care Providers ◽

Structural Equation ◽

Public Attitudes ◽

Equation Modeling ◽

Care Providers ◽

Public Provision ◽

The Public ◽

People’S Attitudes ◽

Willingness To Contribute

This article presents an exploratory model to classify public attitudes towards health systems financing and organization. It comprises 5 factors (pay-as-you-use, solidarity, willingness to contribute, mixed financing, and public provision) measured by 17 indicators, selected through Exploratory Structural Equation Modeling (ESEM) applied to a sample of Chilean adults. Based on this model, cluster analysis proposed 2 groups: “Taxes-public” and “Insurance-choice,” representing 47% and 53% of interviewees, respectively. The results show differences between groups concerning the evaluation of both health care providers and insurers. The second cluster tends to evaluate them more harshly, showing less willingness to contribute further, less solidarity, more agreement with the current financing arrangement in terms of the mixture and its insurance (as opposed to purchasing of service based on health problems), and more support for choice of provider. These results highlight the need to consider people’s attitudes in the public discussion of health systems financing.

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On the Margins of Death: A Scoping Review on Palliative Care and Schizophrenia

Journal of Palliative Care ◽

10.1177/0825859718804108 ◽

2018 ◽

Vol 34 (1) ◽

pp. 62-69 ◽

Cited By ~ 7

Author(s):

Erin Relyea ◽

Brooke MacDonald ◽

Christina Cattaruzza ◽

Denise Marshall

Keyword(s):

Health Care ◽

Palliative Care ◽

Access To Care ◽

End Of Life ◽

Health Care Providers ◽

Scoping Review ◽

End Of Life Care ◽

Psychosocial Interventions ◽

Life Care ◽

Care Providers

Schizophrenia is a serious chronic mental illness that results in marginalization and stigma for sufferers. It is the seventh leading cause for disability worldwide. The symptoms of the illness, including hallucinations, delusions, and extremely disordered thinking and behavior, may also introduce barriers to accessing treatment, education, housing, and employment. Little is known about end-of-life care for individuals with schizophrenia. To address this gap, a scoping review was conducted to enhance understanding of hospice and palliative care for patients with schizophrenia. From this scoping review, 342 unique titles and abstracts were identified through a search of 20 databases, including 11 social science databases, 6 medical databases, and 3 gray literature databases. A total of 32 articles met the inclusion criteria and the following 4 themes were identified: Stigma affecting quality of care and access to care; Issues related to consent and capacity for the patient’s end-of-life care decisions and to appoint substitute decision makers; Best practices for psychosocial interventions, pharmacology, family and health-care collaborations, goals of care, setting, and smoking; and Barriers to care, including setting, communication, provider education, and access to care. The review suggests the importance of mandatory interdisciplinary training practices and policy standards outlining cooperative communication across health-care providers. It highlights gaps in evidence-based research on psychosocial interventions and collaborative frameworks to enable the provision of quality end-of-life care for individuals with schizophrenia.

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Interrelationships Between Patients’ Data Tracking Practices, Data Sharing Practices, and Health Literacy: Onsite Survey Study

Journal of Medical Internet Research ◽

10.2196/18937 ◽

2020 ◽

Vol 22 (12) ◽

pp. e18937

Author(s):

Yuhan Luo ◽

Chi Young Oh ◽

Beth St Jean ◽

Eun Kyoung Choe

Keyword(s):

Health Care ◽

Health Literacy ◽

Data Sharing ◽

Health Care Providers ◽

Clinic Visit ◽

Survey Study ◽

Sufficient Information ◽

Full Potential ◽

Care Providers ◽

Data Tracking

Background Although the use of patient-generated data (PGD) in the optimization of patient care shows great promise, little is known about whether patients who track their PGD necessarily share the data with their clinicians. Meanwhile, health literacy—an important construct that captures an individual’s ability to manage their health and to engage with their health care providers—has often been neglected in prior studies focused on PGD tracking and sharing. To leverage the full potential of PGD, it is necessary to bridge the gap between patients’ data tracking and data sharing practices by first understanding the interrelationships between these practices and the factors contributing to these practices. Objective This study aims to systematically examine the interrelationships between PGD tracking practices, data sharing practices, and health literacy among individual patients. Methods We surveyed 109 patients at the time they met with a clinician at a university health center, unlike prior research that often examined patients’ retrospective experience after some time had passed since their clinic visit. The survey consisted of 39 questions asking patients about their PGD tracking and sharing practices based on their current clinical encounter. The survey also contained questions related to the participants’ health literacy. All the participants completed the survey on a tablet device. The onsite survey study enabled us to collect ecologically valid data based on patients’ immediate experiences situated within their clinic visit. Results We found no evidence that tracking PGD was related to self-reports of having sufficient information to manage one’s health; however, the number of data types participants tracked positively related to their self-assessed ability to actively engage with health care providers. Participants’ data tracking practices and their health literacy did not relate to their data sharing practices; however, their ability to engage with health care providers positively related to their willingness to share their data with clinicians in the future. Participants reported several benefits of, and barriers to, sharing their PGD with clinicians. Conclusions Although tracking PGD could help patients better engage with health care providers, it may not provide patients with sufficient information to manage their health. The gaps between tracking and sharing PGD with health care providers call for efforts to inform patients of how their data relate to their health and to facilitate efficient clinician-patient communication. To realize the full potential of PGD and to promote individuals’ health literacy, empowering patients to effectively track and share their PGD is important—both technologies and health care providers can play important roles.

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Health workers' views on factors affecting caregiver engagement with bubble CPAP

10.21203/rs.2.23017/v3 ◽

2020 ◽

Author(s):

Sangwani Salimu ◽

Maggie Woo Kinshella ◽

Marianne Vidler ◽

Mwai Banda ◽

Laura Newberry ◽

...

Keyword(s):

Health Care ◽

Health Care Providers ◽

Health Workers ◽

Health Management ◽

Care Providers ◽

District Health ◽

Severe Respiratory Distress ◽

Good Communication ◽

District Hospitals ◽

Bubble Cpap

Abstract Background Severe respiratory distress is a leading cause of mortality among neonates in Malawi. Despite evidence on the safety, cost effectiveness and efficacy of bubble continuous positive airway pressure (CPAP) in managing the condition, its use in Malawian health facilities is limited and little is known about caregivers' engagement with perspectives of bubble CPAP. The purpose of this study was to explore caregiver perspectives for bubble CPAP at both central and district hospitals and key factors that enable effective caregiver engagement in Malawi. Methods This was a descriptive qualitative study employing secondary analysis of 46 health care worker in-depth interviews. We interviewed the health workers about their thoughts on caregiver perspectives regarding use of bubble CPAP. We implemented the study at a tertiary facility and three district hospitals in southern Malawi. This was a part of a larger study to understand barriers and facilitators to implementing neonatal innovations in resource-constrained hospitals. Interviews were thematically analysed in NVivo 12 software (QSR International, Melbourne, Australia). Health workers were purposively selected to include nurses, clinicians and district health management involved in the use of bubble CPAP.Results Emerging issues included caregiver fears around bubble CPAP equipment as potentially harmful to their new-borns and how inadequate information provided to caregivers exacerbated knowledge gaps and was associated with refusal of care. However, good communication between health care providers and caregivers was associated with acceptance of care. Caregivers’ decision-making was influenced by relatives and peer advocates were helpful in supporting caregivers and alleviating fears or misconceptions about bubble CPAP.Conclusions Since caregivers turn to relatives and peers for support, there is need to ensure that both relatives and peers are counselled on bubble CPAP for improved understanding and uptake. Health workers need to provide simplified, accurate, up-to-date information on the intervention as per caregivers’ level of understanding. Notably, contextualised comprehensible information will help alleviate caregivers’ fear and anxieties about bubble CPAP.

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Nursing Presence in Pediatric Oncology: A Scoping Review

Journal of Pediatric Oncology Nursing ◽

10.1177/10434542211041939 ◽

2021 ◽

pp. 104345422110419

Author(s):

Solomon K. Mcharo ◽

Jill Bally ◽

Shelley Spurr

Keyword(s):

Health Care Providers ◽

Pediatric Oncology ◽

Scoping Review ◽

Chronic Illnesses ◽

Care Providers ◽

Analysis Process ◽

Search Terms ◽

Final Sample ◽

Nursing Presence ◽

Being There

Background: Nursing presence creates meaningful and trusting relationships that facilitate healing for the patient and enhances the nurse's clinical experience. Although nursing presence has been linked to better health outcomes especially in chronic illnesses and end-of-life, little is known about its contribution in pediatric oncology. Purpose: The purpose of this scoping review was to explore how nursing presence is understood and expressed in pediatric oncology. Methods: Arksey and O’Malley’s (2005) framework was used to guide the review, with Clarke and Braun’s (2013) thematic analysis process used for collating, summarizing, and reporting the results. Key search terms were developed for searches between January 1999 and July 2020 in CINAHL, MEDLINE, and Psych INFO databases. Initially, 4,357 studies were identified with a final sample of nine articles meeting specific inclusion and exclusion criteria. Gray literature retrieved from the search was used to inform the review. Findings: Most notably, there is a limited understanding of nursing presence in pediatric oncology setting. However, findings revealed five themes that can be identified with nursing presence: Being With or Being There, Therapeutic Relationships, Communication, Family-centered Approach, and Perceived Outcomes of Nursing Presence. Nurses in pediatric oncology are in an ideal position to provide nursing presence in order to improve the quality of care in pediatric oncology settings. Discussion: There is a need to establish a comprehensive evidence-based understanding of the construct of nursing presence in pediatric oncology that health care providers can utilize to enhance their clinical practice and health research.

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MP34: Elder abuse in the emergency department: a systematic scoping review

CJEM ◽

10.1017/cem.2019.169 ◽

2019 ◽

Vol 21 (S1) ◽

pp. S54-S55

Author(s):

E. Mercier ◽

A. Nadeau ◽

A. Brousseau ◽

M. Emond ◽

J. Lowthian ◽

...

Keyword(s):

Older Adults ◽

Health Care ◽

Emergency Department ◽

Physical Abuse ◽

Health Care Providers ◽

Scoping Review ◽

Elder Abuse ◽

Community Dwelling ◽

Screening Tools ◽

Care Providers

Introduction: This systematic scoping review aims to synthetize the available evidence on the epidemiology, risk factors, clinical characteristics, screening tools, prevention strategies, interventions and knowledge of health care providers regarding elder abuse in the emergency department (ED). Methods: A systematic literature search was performed using three databases (Medline, Embase and Cochrane Library). Grey literature was scrutinized. Studies were considered eligible when they were observational studies or randomized control trials reporting on elder abuse in the prehospital and/or ED setting. Data extraction was performed independently by two researchers and a qualitative approach was used to synthetize the findings. Results: A total of 443 citations were retrieved from which 58 studies published between 1988 and 2018 were finally included. Prevalence of elder abuse following an ED visit varied between 0.01% and 0.03%. Reporting of elder abuse to proper law authorities by ED physicians varied between 2% to 50% of suspected cases. The most common reported type of elder abuse detected was neglect followed by physical abuse. Female gender was the most consistent factor associated with elder abuse. Cognitive impairment, behavioral problems and psychiatric disorder of the patient or the caregiver were also associated with physical abuse and neglect as well as more frequent ED consultations. Several screening tools have been proposed, but ED-based validation is lacking. Literature on prehospital- or ED-initiated prevention and interventions was scarce without any controlled trial. Health care providers were poorly trained to detect and care for older adults who are suspected of being a victim of elder abuse. Conclusion: Elder abuse in the ED is an understudied topic. It remains underrecognized and underreported with ED prevalence rates lower than those in community-dwelling older adults. Health care providers reported lacking appropriate training and knowledge with regards to elder abuse. Dedicated ED studies are required.

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