Investigating Mental Health Service User Opinions on Clinical Data Sharing: Qualitative Focus Group Study

Adanijo, Abimbola; McWilliams, Caoimhe; Wykes, Til; Jilka, Sagar

doi:10.2196/30596

Cited by 13 publications

(13 citation statements)

References 32 publications

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“…The research team developed a standardized template to extract and chart relevant data from the included studies [5,[12][13][14][15][16][17][18][19][20][21][22][23][39][40][41][42][43][44][45][46][47][48][49][50][51][52][53][54][55][56]. The following parameters were recorded in detail: reference ID, authors, year, country, design, sample, participants, treatment setting and medical specialty, study purpose, and a summary of the results.…”

Section: Data Extraction and Managementmentioning

confidence: 99%

“…The following parameters were recorded in detail: reference ID, authors, year, country, design, sample, participants, treatment setting and medical specialty, study purpose, and a summary of the results. The data were extracted by JS and AB, and checked for accuracy and completeness by CB (see Multimedia Appendix 2 [5,[12][13][14][15][16][17][18][19][20][21][22][23][39][40][41][42][43][44][45][46][47][48][49][50][51][52][53][54][55][56] for more information).…”

Section: Data Extraction and Managementmentioning

confidence: 99%

“…Instead, a detailed description of the quality of the included studies is provided based on the MMAT grading results. A comprehensive presentation of the individual ratings of each criterion can be found in Multimedia Appendix 3 [5,[12][13][14][15][16][17][18][19][20][21][22][23][39][40][41][42][43][44][45][46][47][48][49][50][51][52][53][54][55][56].…”

Section: Quality Assessment Of Studiesmentioning

confidence: 99%

“…Study design [12,15,16,18,[21][22][23]39,50,51] 10 (32) Qualitative [5,13,14,17,40,43,45,48,49 13) Psychotherapy [5,14,16,17,19,20,23,45,47,48,50,55,56] 13 (42) Psychiatry [13,15,22,[39][40][41][42][43]52] 9 (29) Veterans Affairs Mental Health [5,21,44,48,49,51] 6 (19) Somatic (General practitioner, Primary Care and other) …”

Section: References Total N (%) Parametermentioning

confidence: 99%

“…Other mental health issues among the participants were depression (unclear to what severity or type) [40,44,52], mild or atypical depression [46], anxiety disorder [41,43,47,52,53], military sexual trauma [52], and other mental illnesses within the International Classification of Disease-10 codes F00-F99 [48]. In 5 papers, mental health diagnoses or issues were not highlighted [19,45,49,51,56]. The most frequent care settings were outpatient and inpatient psychiatry, outpatient veterans' mental health, outpatient psychotherapy, and primary care settings.…”

Section: Overviewmentioning

confidence: 99%

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Sharing Clinical Notes and Electronic Health Records With People Affected by Mental Health Conditions: Scoping Review

Schwarz¹,

Bärkås²,

Blease³

et al. 2021

JMIR Ment Health

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Background Electronic health records (EHRs) are increasingly implemented internationally, whereas digital sharing of EHRs with service users (SUs) is a relatively new practice. Studies of patient-accessible EHRs (PAEHRs)—often referred to as open notes—have revealed promising results within general medicine settings. However, studies carried out in mental health care (MHC) settings highlight several ethical and practical challenges that require further exploration. Objective This scoping review aims to map available evidence on PAEHRs in MHC. We seek to relate findings with research from other health contexts, to compare different stakeholders’ perspectives, expectations, actual experiences with PAEHRs, and identify potential research gaps. Methods A systematic scoping review was performed using 6 electronic databases. Studies that focused on the digital sharing of clinical notes or EHRs with people affected by mental health conditions up to September 2021 were included. The Mixed Methods Appraisal Tool was used to assess the quality of the studies. The PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) Extension for Scoping Reviews guided narrative synthesis and reporting of findings. Results Of the 1034 papers screened, 31 were included in this review. The studies used mostly qualitative methods or surveys and were predominantly published after 2018 in the United States. PAEHRs were examined in outpatient (n=29) and inpatient settings (n=11), and a third of all research was conducted in Veterans Affairs Mental Health. Narrative synthesis allowed the integration of findings according to the different stakeholders. First, SUs reported mainly positive experiences with PAEHRs, such as increased trust in their clinician, health literacy, and empowerment. Negative experiences were related to inaccurate notes, disrespectful language use, or uncovering of undiscussed diagnoses. Second, for health care professionals, concerns outweigh the benefits of sharing EHRs, including an increased clinical burden owing to more documentation efforts and possible harm triggered by reading the notes. Third, care partners gained a better understanding of their family members’ mental problems and were able to better support them when they had access to their EHR. Finally, policy stakeholders and experts addressed ethical challenges and recommended the development of guidelines and trainings to better prepare both clinicians and SUs on how to write and read notes. Conclusions PAEHRs in MHC may strengthen user involvement, patients’ autonomy, and shift medical treatment to a coproduced process. Acceptance issues among health care professionals align with the findings from general health settings. However, the corpus of evidence on digital sharing of EHRs with people affected by mental health conditions is limited. Above all, further research is needed to examine the clinical effectiveness, efficiency, and implementation of this sociotechnical intervention.

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Section: Data Extraction and Managementmentioning

confidence: 99%

Section: Data Extraction and Managementmentioning

confidence: 99%

Section: Quality Assessment Of Studiesmentioning

confidence: 99%

Section: References Total N (%) Parametermentioning

confidence: 99%

Section: Overviewmentioning

confidence: 99%

See 3 more Smart Citations

Sharing Clinical Notes and Electronic Health Records With People Affected by Mental Health Conditions: Scoping Review

Schwarz¹,

Bärkås²,

Blease³

et al. 2021

JMIR Ment Health

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SOK: Evaluating Privacy and Security Vulnerabilities of Patients’ Data in Healthcare

Tazi

Dykstra²,

Rajivan

et al. 2022

Lecture Notes in Computer Science

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Sensitive information is intrinsically tied to interactions in healthcare, and its protection is of paramount importance for achieving high-quality patient outcomes. Research in healthcare privacy and security is predominantly focused on understanding the factors that increase the susceptibility of users to privacy and security breaches. To understand further, we systematically review 26 research papers in this domain to explore the existing user studies in healthcare privacy and security. Following the review, we conducted a card-sorting exercise, allowing us to identify 12 themes integral to this subject such as "Data Sharing," "Risk Awareness," and "Privacy." Further to the identification of these themes, we performed an in-depth analysis of the 26 research papers report on the insights into the discourse within the research community about healthcare privacy and security, particularly from the user perspective. MotivationSecurity and privacy integration in the healthcare domain is essential to protect patients' data [12], considering medical records include sensitive health and personal information. The healthcare industry is often a prime target for cybercriminals considering that these data sets could contain a plethora of sensitive information such as social security numbers, birth dates, employment information, emergency contacts, and insurance and billing data; these data are also notoriously difficult to monitor or safeguard after a breach [23]. Furthermore, healthcare data are lucrative on the black market. Sahi et al. noted

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A Literature Perspective of Stakeholder’s Perceptions of Value and Risks for the Secondary Use of Health Data

Sermontyte-Baniule,

Helander,

Nieminen

2024

SN COMPUT. SCI.

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Investigating Mental Health Service User Opinions on Clinical Data Sharing: Qualitative Focus Group Study

Cited by 13 publications

References 32 publications

Sharing Clinical Notes and Electronic Health Records With People Affected by Mental Health Conditions: Scoping Review

Sharing Clinical Notes and Electronic Health Records With People Affected by Mental Health Conditions: Scoping Review

SOK: Evaluating Privacy and Security Vulnerabilities of Patients’ Data in Healthcare

A Literature Perspective of Stakeholder’s Perceptions of Value and Risks for the Secondary Use of Health Data

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