Mental health professionals' perceptions on patients control of data sharing.
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ABSTRACT:
SUBMITTER: Ivanova J
PROVIDER: S-EPMC9310561 | biostudies-literature |
REPOSITORIES: biostudies-literature
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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:BACKGROUND: Scientific 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 FINDINGS: A 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/SIGNIFICANCE: Barriers 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: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: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:BACKGROUND:To date, mental health professionals' attitudes toward posttraumatic stress disorder (PTSD), compared to other psychiatric disorders such as schizophrenia or depression, have rarely been studied. OBJECTIVE:We assessed mental health professionals' attitudes toward patients with PTSD compared to patients suffering from depression. METHOD:Case 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. RESULTS:Participants 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. CONCLUSIONS:Mental 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. LIMITATIONS:The instruments used, although based on established theoretical concepts in attitude research, were not validated in their present versions.
| S-EPMC4623286 | biostudies-literature
Project description:Analyzing genomic data across populations is central to understanding the role of genetic factors in health and disease. Successful data sharing relies on public support, which requires attention to whether people around the world are willing to donate their data that are then subsequently shared with others for research. However, studies of such public perceptions are geographically limited and do not enable comparison. This paper presents results from a very large public survey on attitudes toward genomic data sharing. Data from 36,268 individuals across 22 countries (gathered in 15 languages) are presented. In general, publics across the world do not appear to be aware of, nor familiar with, the concepts of DNA, genetics, and genomics. Willingness to donate one's DNA and health data for research is relatively low, and trust in the process of data's being shared with multiple users (e.g., doctors, researchers, governments) is also low. Participants were most willing to donate DNA or health information for research when the recipient was specified as a medical doctor and least willing to donate when the recipient was a for-profit researcher. Those who were familiar with genetics and who were trusting of the users asking for data were more likely to be willing to donate. However, less than half of participants trusted more than one potential user of data, although this varied across countries. Genetic information was not uniformly seen as different from other forms of health information, but there was an association between seeing genetic information as special in some way compared to other health data and increased willingness to donate. The global perspective provided by our "Your DNA, Your Say" study is valuable for informing the development of international policy and practice for sharing genomic data. It highlights that the research community not only needs to be worthy of trust by the public, but also urgent steps need to be taken to authentically communicate why genomic research is necessary and how data donation, and subsequent sharing, is integral to this.
| S-EPMC7536612 | biostudies-literature
Project description:BackgroundSharing patient data can help drive scientific advances and improve patient care, but service users are concerned about how their data are used. When the National Health Service proposes to scrape general practitioner records, it is very important that we understand these concerns in some depth.ObjectiveThis study aims to investigate views of mental health service users on acceptable data sharing to provide clear recommendations for future data sharing systems.MethodsA total of 4 focus groups with 4 member-checking groups were conducted via the internet between October 2020 and March 2021, with a total of 22 service users in the United Kingdom. Thematic analysis was used to identify the themes.ResultsSix main themes, with several subthemes were identified, such as the purpose of data sharing-for profit, public good, and continuation of care; discrimination through the misattribution of physical symptoms to mental health conditions (ie, diagnostic overshadowing) alongside the discrimination of individuals or groups within society (ie, institutional discrimination); safeguarding data by preserving anonymity and confidentiality, strengthening security measures, and holding organizations accountable; data accuracy and informed consent-increasing transparency about data use and choice; and incorporating service user involvement in system governance to provide insight and increase security.ConclusionsThis study extends the limited research on the views and concerns of mental health service users regarding acceptable data sharing. If adopted, the recommendations should improve the confidence of service users in sharing their data. The five recommendations include screening to ensure that data sharing benefits the public, providing service users with information about how their data are shared and what for, highlighting the existing safeguarding procedures, incorporating service user involvement, and developing tailored training for health care professionals to address issues of diagnostic overshadowing and inaccurate health records. Adopting such systems would aid in data sharing for legitimate interests that will benefit patients and the National Health Service.
| S-EPMC8449295 | 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
Project description:BackgroundChatbots have been used in the last decade to improve access to mental health care services. Perceptions and opinions of patients influence the adoption of chatbots for health care. Many studies have been conducted to assess the perceptions and opinions of patients about mental health chatbots. To the best of our knowledge, there has been no review of the evidence surrounding perceptions and opinions of patients about mental health chatbots.ObjectiveThis study aims to conduct a scoping review of the perceptions and opinions of patients about chatbots for mental health.MethodsThe scoping review was carried out in line with the PRISMA (Preferred Reporting Items for Systematic reviews and Meta-Analyses) extension for scoping reviews guidelines. Studies were identified by searching 8 electronic databases (eg, MEDLINE and Embase) in addition to conducting backward and forward reference list checking of the included studies and relevant reviews. In total, 2 reviewers independently selected studies and extracted data from the included studies. Data were synthesized using thematic analysis.ResultsOf 1072 citations retrieved, 37 unique studies were included in the review. The thematic analysis generated 10 themes from the findings of the studies: usefulness, ease of use, responsiveness, understandability, acceptability, attractiveness, trustworthiness, enjoyability, content, and comparisons.ConclusionsThe results demonstrated overall positive perceptions and opinions of patients about chatbots for mental health. Important issues to be addressed in the future are the linguistic capabilities of the chatbots: they have to be able to deal adequately with unexpected user input, provide high-quality responses, and have to show high variability in responses. To be useful for clinical practice, we have to find ways to harmonize chatbot content with individual treatment recommendations, that is, a personalization of chatbot conversations is required.
| S-EPMC7840290 | biostudies-literature
Project description:Research data is increasingly viewed as an important scholarly output. While a growing body of studies have investigated researcher practices and perceptions related to data sharing, information about data-related practices throughout the research process (including data collection and analysis) remains largely anecdotal. Building on our previous study of data practices in neuroimaging research, we conducted a survey of data management practices in the field of psychology. Our survey included questions about the type(s) of data collected, the tools used for data analysis, practices related to data organization, maintaining documentation, backup procedures, and long-term archiving of research materials. Our results demonstrate the complexity of managing and sharing data in psychology. Data is collected in multifarious forms from human participants, analyzed using a range of software tools, and archived in formats that may become obsolete. As individuals, our participants demonstrated relatively good data management practices, however they also indicated that there was little standardization within their research group. Participants generally indicated that they were willing to change their current practices in light of new technologies, opportunities, or requirements.
| S-EPMC8139478 | biostudies-literature