A Study to Elicit Behavioral Health Patients' and Providers' Opinions on Health Records Consent

Grando, Adela; Murcko, Anita C.; Mahankali, Srividya; Saks, Michael J.; Zent, Michael; Chern, Darwyn; Dye, Christy; Sharp, Richard R.; Young, Laura; Davis, Patricia; Hiestand, Megan; Hassanzadeh, Neda

doi:10.1177/1073110517720653

Cited by 25 publications

(52 citation statements)

References 16 publications

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“…43,44 While some of these studies include patients with mental health disorders, few include patients with SMI. 31,44,34 We found that the majority of mental health professionals supported patient-centered granular data sharing control for care and research (70%). Regarding the impact on coordination of care, many feel patients should be allowed to restrict access to sensitive data in justified contexts, such as to avoid discrimination from professionals outside the mental health care system.…”

Section: Discussionmentioning

confidence: 96%

“…Three transcripts were randomly chosen for exploratory analysis of themes expected from previous literature. 19,21,30,31,34 Thematic analysis themes were identified through repetition and frequency in the transcripts. 33 Meaningful segments of conversation considered were the units for coding and analysis.…”

Section: Discussionmentioning

confidence: 99%

“…Semi-structured interviews were chosen to allow participants to elaborate on their answers and present new ideas throughout-all while ensuring main concepts are discussed for analysis. 33 The interview script is based on prior studies 21,31,34 and aims to elucidate key concepts identified in these studies. Foci include the effects of stigma, fear of discrimination, and culture on patient consent; differences in patient populations (SMI and general mental health); the current state of consent processes; and health professionals' opinions on consent process tools.…”

Section: Interview Script Designmentioning

confidence: 99%

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Mental health professional perspectives on health data sharing: Mixed methods study

Grando

Ivanova²,

Hiestand³

et al. 2020

Health Informatics J

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This study explores behavioral health professionals’ perceptions of granular data. Semi-structured in-person interviews of 20 health professionals were conducted at two different sites. Qualitative and quantitative analysis was performed. While most health professionals agreed that patients should control who accesses their personal medical record (70%), there are certain types of health information that should never be restricted (65%). Emergent themes, including perceived reasons that patients might share or withhold certain types of health information (65%), care coordination (12%), patient comprehension (11%), stigma (5%), trust (3%), sociocultural understanding (3%), and dissatisfaction with consent processes (1%), are explored. The impact of care role (prescriber or non-prescriber) on data-sharing perception is explored as well. This study informs the discussion on developing technology that helps balance provider and patient data-sharing and access needs.

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Section: Discussionmentioning

confidence: 96%

Section: Discussionmentioning

confidence: 99%

Section: Interview Script Designmentioning

confidence: 99%

See 1 more Smart Citation

Mental health professional perspectives on health data sharing: Mixed methods study

Grando

Ivanova²,

Hiestand³

et al. 2020

Health Informatics J

Self Cite

View full text Add to dashboard Cite

show abstract

“…One often suggested way to mitigate the ethical concerns around the sharing of personal data in a research framework is by giving participants granular consent options [37]. In a medical context, most patients prefer to have a granular control over which medical data to share and for which purposes [88,89], especially in the context of electronic medical records [90]. Furthermore, the GDPR requires that organizations handling personal data give the individual granular consent options for how their data is used [91].…”

Section: Granular and Speci C Consentmentioning

confidence: 99%

Open Humans: A platform for participant-centered research and personal data exploration

Tzovaras

Arvai

Dulaney

et al. 2018

Preprint

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Background: Many aspects of our lives are now digitized and connected to the internet. As a result, individuals are now creating and collecting more personal data than ever before. This o ers an unprecedented chance for human-participant research ranging from the social sciences to precision medicine. With this potential wealth of data come practical problems (such as how to merge data streams from various sources),as well as ethical problems (such as how to best balance risks and bene ts when enabling personal data sharing by individuals). Results: To begin to address these problems in real time, we present Open Humans, a community-based platform that enables personal data collections across data streams, giving individuals more personal data access and control of sharing authorizations, and enabling academic research as well as patient-led projects. We showcase data streams that Open Humans combines (e.g. personal genetic data, wearable activity monitors, GPS location records and continuous glucose monitor data), along with use cases of how the data facilitates various projects. Conclusions: Open Humans highlights how a community-centric ecosystem can be used to aggregate personal data from various sources as well as how these data can be used by academic and citizen scientists through practical, iterative approaches to sharing that strive to balance considerations with participant autonomy, inclusion, and privacy. BackgroundResearch involving human participants, from biomedical and health research to social sciences studies, is experiencing rapid changes. The rise of electronic records, online platforms, and data from devices contribute to a sense that these collected data can change how research in these elds is performed [1,2,3,4] Among the impacted disciplines is precision medicine -

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“…Generally, the current literature demonstrates that patients prefer more transparency and granular data control, but there is a disconnect between patient and provider perspectives. 19,18,[22][23][24][25][26] A survey-based study of over 1600 participants concluded that patients are most influenced by privacy concerns (significant negative path coefficient βPC = −0.160, p < .001) when deciding whether to share their health information. 27 Other studies showed that trust in providers is the motivating factor to share health data, including highly sensitive information, such as HIV.…”

Section: Introductionmentioning

confidence: 99%

Mental health professionals’ perceptions on patients control of data sharing

Ivanova

Grando

Murcko

et al. 2020

Health Informatics J

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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.

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A Study to Elicit Behavioral Health Patients' and Providers' Opinions on Health Records Consent

Cited by 25 publications

References 16 publications

Mental health professional perspectives on health data sharing: Mixed methods study

Mental health professional perspectives on health data sharing: Mixed methods study

Open Humans: A platform for participant-centered research and personal data exploration

Mental health professionals’ perceptions on patients control of data sharing

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