Mental health professionals' perceptions on patients control of data sharing.
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ABSTRACT:
SUBMITTER: Ivanova J
PROVIDER: S-EPMC9310561 | biostudies-literature | 2020 Sep
REPOSITORIES: biostudies-literature
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Mental health professionals' perceptions on patients control of data sharing.
Ivanova Julia J Grando Adela A Murcko Anita A Saks Michael M Whitfield Mary Jo MJ Dye Christy C Chern Darwyn D
Health informatics journal 20200108 3
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 patie ...[more]
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Project description:The rapid advancement of digital health technologies has heightened demand for health data for secondary uses, highlighting the importance of understanding global perspectives on personal information sharing. This article examines stakeholder perceptions and attitudes toward the use of personal health data to improve personalized treatments, interventions, and research. It also identifies barriers and facilitators in health data sharing and pinpoints gaps in current research, aiming to inform ethical practices in healthcare settings that utilize digital technologies. We conducted a scoping review of peer reviewed empirical studies based on data pertaining to perceptions and attitudes towards sharing personal health data. The authors searched three electronic databases-Embase, MEDLINE, and Web of Science-for articles published (2015-2023), using terms relating to health data and perceptions. Thirty-nine articles met the inclusion criteria with sample size ranging from 14 to 29,275. We followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews guidelines for the design and analysis of this study. We synthesized the included articles using narrative analysis. The review captured multiple stakeholder perspectives with an up-to-date range of diverse barriers and facilitators that impact data-sharing behavior. The included studies were primarily cross-sectional and geographically concentrated in high-income settings; often overlooking diverse demographics and broader global health challenges. Most of the included studies were based within North America and Western Europe, with the United States (n = 8) and the United Kingdom (n = 7) representing the most studied countries. Many reviewed studies were published in 2022 (n = 11) and used quantitative methods (n = 23). Twenty-nine studies examined the perspectives of patients and the public while six looked at healthcare professionals, researchers, and experts. Many of the studies we reviewed reported overall positive attitudes about data sharing with variations around sociodemographic factors, motivations for sharing data, type and recipient of data being shared, consent preference, and trust.
| S-EPMC11578505 | biostudies-literature
Project description:BackgroundPatient-directed selection and sharing of health information "granules" is known as granular information sharing. In a previous study, patients with behavioral health conditions categorized their own health information into sensitive categories (eg, mental health) and chose the health professionals (eg, pharmacists) who should have access to those records. Little is known about behavioral health professionals' perspectives of patient-controlled granular information sharing (PC-GIS).ObjectiveThis study aimed to assess behavioral health professionals' (1) understanding of and opinions about PC-GIS; (2) accuracy in assessing redacted medical information; (3) reactions to patient rationale for health data categorization, assignment of sensitivity, and sharing choices; and (4) recommendations to improve PC-GIS.MethodsFour 2-hour focus groups and pre- and postsurveys were conducted at 2 facilities. During the focus groups, outcomes from a previous study on patients' choices for medical record sharing were discussed. Thematic analysis was applied to focus group transcripts to address study objectives.ResultsA total of 28 health professionals were recruited. Over half (14/25, 56%) were unaware or provided incorrect definitions of granular information sharing. After PC-GIS was explained, all professionals demonstrated understanding of the terminology and process. Most (26/32 codes, 81%) recognized that key medical data had been redacted from the study case. A majority (41/62 codes, 66%) found the patient rationale for categorization and data sharing choices to be unclear. Finally, education and other approaches to inform and engage patients in granular information sharing were recommended.ConclusionsThis study provides detailed insights from behavioral health professionals on granular information sharing. Outcomes will inform the development, deployment, and evaluation of an electronic consent tool for granular health data sharing.
| S-EPMC9069296 | biostudies-literature
Project description:BackgroundScientific research in the 21st century is more data intensive and collaborative than in the past. It is important to study the data practices of researchers--data accessibility, discovery, re-use, preservation and, particularly, data sharing. Data sharing is a valuable part of the scientific method allowing for verification of results and extending research from prior results.Methodology/principal findingsA total of 1329 scientists participated in this survey exploring current data sharing practices and perceptions of the barriers and enablers of data sharing. Scientists do not make their data electronically available to others for various reasons, including insufficient time and lack of funding. Most respondents are satisfied with their current processes for the initial and short-term parts of the data or research lifecycle (collecting their research data; searching for, describing or cataloging, analyzing, and short-term storage of their data) but are not satisfied with long-term data preservation. Many organizations do not provide support to their researchers for data management both in the short- and long-term. If certain conditions are met (such as formal citation and sharing reprints) respondents agree they are willing to share their data. There are also significant differences and approaches in data management practices based on primary funding agency, subject discipline, age, work focus, and world region.Conclusions/significanceBarriers to effective data sharing and preservation are deeply rooted in the practices and culture of the research process as well as the researchers themselves. New mandates for data management plans from NSF and other federal agencies and world-wide attention to the need to share and preserve data could lead to changes. Large scale programs, such as the NSF-sponsored DataNET (including projects like DataONE) will both bring attention and resources to the issue and make it easier for scientists to apply sound data management principles.
| S-EPMC3126798 | biostudies-literature
Project description:BackgroundConsiderable research is being conducted as to how artificial intelligence (AI) can be effectively applied to health care. However, for the successful implementation of AI, large amounts of health data are required for training and testing algorithms. As such, there is a need to understand the perspectives and viewpoints of patients regarding the use of their health data in AI research.ObjectiveWe surveyed a large sample of patients for identifying current awareness regarding health data research, and for obtaining their opinions and views on data sharing for AI research purposes, and on the use of AI technology on health care data.MethodsA cross-sectional survey with patients was conducted at a large multisite teaching hospital in the United Kingdom. Data were collected on patient and public views about sharing health data for research and the use of AI on health data.ResultsA total of 408 participants completed the survey. The respondents had generally low levels of prior knowledge about AI. Most were comfortable with sharing health data with the National Health Service (NHS) (318/408, 77.9%) or universities (268/408, 65.7%), but far fewer with commercial organizations such as technology companies (108/408, 26.4%). The majority endorsed AI research on health care data (357/408, 87.4%) and health care imaging (353/408, 86.4%) in a university setting, provided that concerns about privacy, reidentification of anonymized health care data, and consent processes were addressed.ConclusionsThere were significant variations in the patient perceptions, levels of support, and understanding of health data research and AI. Greater public engagement levels and debates are necessary to ensure the acceptability of AI research and its successful integration into clinical practice in future.
| S-EPMC8430862 | biostudies-literature
Project description:BackgroundMental health professionals (MHP) working in court-mandated treatment settings face ethical dilemmas due to their dual role in assuring their patient's well-being while guaranteeing the security of the population. Clear practical guidelines to support these MHPs' decision-making are lacking, amongst others, due to the ethical conflicts within this field. This qualitative interview study contributes to the much-needed empirical research on how MHPs resolve these ethical conflicts in daily clinical practice.Methods31 MHPs working in court-mandated treatment settings were interviewed. The interviews were semi-structured and our in-depth analysis followed the thematic analysis approach.ResultsWe first outline how mental health professionals perceive their dual loyalty conflict and how they describe their affiliations with the medical and the justice system. Our findings indicate that this positioning was influenced by situational factors, drawing the MHPs at times closer to the caring or controlling poles. Second, our results illustrate how participating MHPs solve their dual loyalty conflict. Participants considered central to motivate the patient, to see the benefits of treatment and its goals. Further, transparent communication with patients and representatives of the justice system was highlighted as key to develop a trustful relationship with the patient and to manage the influences from the different players involved.ConclusionsEven though individual positioning and opinions towards dealing with the influences of the justice system varied, the results of our research show that, in spite of varying positions, the underlying practice is not very different across participating MHPs. Several techniques that allow developing a high-quality therapeutic alliance with the patient are key elements of general psychotherapy. Transparency appears as the crucial factor when communicating with the patient and with representatives of the justice system. More specifically, patients need to be informed since the beginning of therapy about the limits of medical confidentiality. It is also recommended to develop guidelines that define the level of detailed information that should be disclosed when communicating with the authorities of the justice system.
| S-EPMC8444425 | biostudies-literature
Project description:This study employed an independent-groups design (4 conditions) to investigate possible biases in the suicide risk perception of mental health professionals. Four hundred participants comprising doctors, nurses and social workers viewed a vignette describing a fictitious patient with a long-term mental illness. The case was presented as being drawn from a sample of twenty similar clinical case reports, of which 10 were associated with an outcome of suicide. The participant tasks were (i) to decide whether the presented vignette was one of those cases or not, and (ii) to provide an assessment of confidence in that decision. The 4 conditions were used to investigate whether the presence of an associated face, and the nature of the emotional state expressed by that face, affected the response profile. In fact, there were no significant differences between conditions, but there was a significant bias across all conditions towards associating the vignette with suicide, despite the base rate being pre-determined at 50%. The bias was more pronounced in doctors and in male respondents. Moreover, many participants indicated substantial confidence in their decisions. The results are discussed in terms of availability bias and over-confidence bias.
| S-EPMC4766090 | biostudies-other
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| S-EPMC7536612 | biostudies-literature
Project description:BackgroundTo date, mental health professionals' attitudes toward posttraumatic stress disorder (PTSD), compared to other psychiatric disorders such as schizophrenia or depression, have rarely been studied.ObjectiveWe assessed mental health professionals' attitudes toward patients with PTSD compared to patients suffering from depression.MethodCase vignettes of a patient with either PTSD or depression were presented to two samples of mental health professionals: attendees of a conference on posttraumatic stress (N=226) or of a lecture for psychiatry residents (N=112). Participants subsequently completed a questionnaire that assessed their attitude reactions to the presented case.ResultsParticipants showed similarly positive attitudes toward depression and PTSD. PTSD elicited a more favorable attitude with regard to prosocial reactions, estimated dependency, attributed responsibility, and interest in the case, particularly in mental health professionals specializing in psychotraumatology. Across diagnoses, higher age and longer professional experience were associated with more positive attitudes toward patients.ConclusionsMental health professionals' positive attitudes toward patients with depression and PTSD correlate with their specific knowledge about the disorder, their level of professional training, and their years of professional experience.LimitationsThe instruments used, although based on established theoretical concepts in attitude research, were not validated in their present versions.
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