Pilot Testing and Evaluation of Participatory Patient Record in Psychiatric Care

Gibson, Molly; Halvorsen, Magne; Joner, Mikkel Angelo Anchissi; Lehne, Mari; Stautland, Elise Rabassa; Svensson, Gustaf; Thevik, Hanna; Fehler, Georgia; Hochwarter, Stefan

doi:10.3384/ecp187039

Cited by 3 publications

(3 citation statements)

References 3 publications

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“…This study is part of the PEPPPSY project (Piloting and Evaluation of a Participatory Patient-Accessible Electronic Health Record in Psychiatry and Somatics; 2021-2023) that focuses on piloting and evaluating a participatory patient record in psychiatry and somatic medicine [ 21 , 22 ]. It aims to examine the development, implementation, processes, and outcomes of the corresponding patient portal, also known as PEPPPSY, from the perspectives of patients and HCPs.…”

Section: Methodsmentioning

confidence: 99%

“…The patient portal PEPPPSY was developed as part of a research collaboration between the Norwegian University of Science and Technology (NTNU) and the MHB. It emerged from an iterative process of participatory design, development, application, and evaluation [ 21 , 22 ]. PEPPPSY’s primary function is to provide patients with secure, 2-factor authenticated access to their physician’s notes, but it also includes other information such as laboratory results and a list of prescribed medications.…”

Section: Methodsmentioning

confidence: 99%

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Reasons for Acceptance or Rejection of Online Record Access Among Patients Affected by a Severe Mental Illness: Mixed Methods Study

Schwarz,

Meier-Diedrich,

Neumann

et al. 2024

JMIR Ment Health

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Background Over the past few years, online record access (ORA) has been established through secure patient portals in various countries, allowing patients to access their health data, including clinical notes (“open notes”). Previous research indicates that ORA in mental health, particularly among patients with severe mental illness (SMI), has been rarely offered. Little is known about the expectations and motivations of patients with SMI when reading what their clinicians share via ORA. Objective The aim of this study is to explore the reasons why patients with SMI consider or reject ORA and whether sociodemographic characteristics may influence patient decisions. Methods ORA was offered to randomly selected patients at 3 university outpatient clinics in Brandenburg, Germany, which exclusively treat patients with SMI. Within the framework of a mixed methods evaluation, qualitative interviews were conducted with patients who chose to participate in ORA and those who declined, aiming to explore the underlying reasons for their decisions. The interviews were transcribed and analyzed using thematic analysis. Sociodemographic characteristics of patients were examined using descriptive statistics to identify predictors of acceptance or rejection of ORA. Results Out of 103 included patients, 58% (n=60) wished to read their clinical notes. The reasons varied, ranging from a desire to engage more actively in their treatment to critically monitoring it and using the accessible data for third-party purposes. Conversely, 42% (n=43) chose not to use ORA, voicing concerns about possibly harming the trustful relationship with their clinicians as well as potential personal distress or uncertainty arising from reading the notes. Practical barriers such as a lack of digital literacy or suspected difficult-to-understand medical language were also named as contributing factors. Correlation analysis revealed that the majority of patients with depressive disorder desired to read the clinical notes (P<.001), while individuals with psychotic disorders showed a higher tendency to decline ORA (P<.05). No significant group differences were observed for other patient groups or characteristics. Conclusions The adoption of ORA is influenced by a wide range of motivational factors, while patients also present a similar variety of reasons for declining its use. The results emphasize the urgent need for knowledge and patient education regarding factors that may hinder the decision to use ORA, including its practical usage, its application possibilities, and concerns related to data privacy. Further research is needed to explore approaches for adequately preparing individuals with SMI to transition from their inherent interest to active engagement with ORA. Trial Registration German Clinical Trial Register DRKS00030188; https://drks.de/search/en/trial/DRKS00030188

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Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Reasons for Acceptance or Rejection of Online Record Access Among Patients Affected by a Severe Mental Illness: Mixed Methods Study

Schwarz,

Meier-Diedrich,

Neumann

et al. 2024

JMIR Ment Health

View full text Add to dashboard Cite

show abstract

“…Die vorliegende Untersuchung ist Teil der PEPPPSY-Studie (“Pilotierung und Evaluation einer partizipativen Patientenakte in der Psychiatrie”; Laufzeit: 2021-2025; Finanzierung: Interne Forschungsförderung der Medizinischen Hochschule Brandenburg) 17 . Im Rahmen von PEPPPSY wird der patientenseitige Zugang zu klinischen Behandlungsnotizen an psychiatrischen Institutsambulanzen (n+=+3) im Land Brandenburg erprobt und begleitend evaluiert 17 18 19 . Dies umfasst auch ein Online-Survey zur Erforschung der Erwartungen und Einstellungen von psychotherapeutisch tätigen Psycholog*innen und Ärzt*innen gegenüber Open Notes auf Bundesebene.…”

Section: Methodenunclassified

Einstellungen und Erwartungen von psychologischen und ärztlichen Psychotherapeut*innen gegenüber Open Notes: Analyse qualitativer Survey-Antworten

Meier-Diedrich,

Neumann,

Heinze

et al. 2024

Psychiatr Prax

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Zusammenfassung Ziel Erforschung der Einstellungen und Erwartungen von Psychotherapeut*innen (PT) gegenüber eines digitalen, patientenseitigen Zugangs zu klinischen Verlaufsnotizen (engl. “Open Notes”; kurz: ON), einschließlich potentieller Vor- und Nachteile in der psychotherapeutischen Praxis. Methodik Im Rahmen der PEPPPSY-Studie wurde ein Online-Survey zu dem o.g. Thema durchgeführt. Es wurden Freitextantworten (n+=+107) qualitativ mittels thematischer Analyse ausgewertet. Ergebnisse 129 Psychologische und ärztliche PT nahmen an der Befragung teil. PT sahen Vorteile wie Transparenz und patientenorientierte Dokumentation, befürchten aber auch Nachteile für die therapeutische Beziehung und einen erhöhten Workload durch die Einführung von ON. Es wurden Bedenken hinsichtlich Datensicherheit und negativer Auswirkungen auf die Behandlung geäußert. Empfehlungen zur Implementierung beinhalten patientenspezifische Anpassungen des Zugangs und begleitete Einsichtnahme der ON. Schlussfolgerung PT zeigen eine ambivalente Haltung gegenüber ON. Weitere Forschung und Leitlinien zur Anwendung von ON in der Psychotherapie sind nötig.

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Reasons for Acceptance or Rejection of Online Record Access Among Patients Affected by a Severe Mental Illness: Mixed Methods Study (Preprint)

Schwarz¹,

Meier-Diedrich²,

Neumann³

et al. 2023

Preprint

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BACKGROUND Over the past few years, online record access (ORA) has been established through secure patient portals in various countries, allowing patients to access their health data, including clinical notes (“open notes”). Previous research indicates that ORA in mental health, particularly among patients with severe mental illness (SMI), has been rarely offered. Limited knowledge exists regarding the expectations and motivations of patients with SMI in reading their clinicians’ clinical notes. OBJECTIVE This study investigates which patient groups, and for what reasons, intend to or refrain from using ORA. METHODS ORA was offered to randomly selected patients at three university outpatient clinics in Brandenburg, Germany, which exclusively treat patients with SMI. Qualitative interviews were conducted with patients who chose to participate in ORA and those who declined, aiming to explore the underlying reasons for their decisions. The interviews were transcribed and analyzed using thematic analysis. Additionally, socio-demographic patient characteristics were examined to identify predictors of acceptance or rejection of ORA. RESULTS Out of 103 included patients, 58% (n=60) wished to read their clinical notes. The reasons varied, ranging from a desire to engage more actively in their treatment, to critically monitor it, and use the accessible data for third-party purposes. Conversely, 42% (n=43) chose not to use ORA, voicing concerns about possibly harming the trustful relationship with their clinicians as well as potential personal distress or uncertainty arising from reading the notes. Practical barriers such as a lack of digital literacy or suspected difficult-to-understand medical language were also named as a contributing factor. Correlation analysis revealed that the majority of patients with depressive disorder desired to read the clinical notes (P<.001), while individuals with psychotic disorders showed a higher tendency to decline ORA (P<.05). No significant group differences were observed for other patient groups or characteristics. CONCLUSIONS The adoption of ORA is influenced by a wide range of motivational factors, while patients also present a similar variety of reasons for declining its use. The results emphasize the urgent need for knowledge and patient education regarding factors that may hinder the decision to use ORA, including its practical usage, its application possibilities and concerns related to data privacy. Further research is needed to explore approaches for adequately preparing individuals with SMI to transition from their inherent interest to active engagement with ORA. CLINICALTRIAL The study was registered with the German Clinical Trial Register (registration number: DRKS00030188, URL of registry: https://drks.de/search/en/trial/DRKS00030188).

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Pilot Testing and Evaluation of Participatory Patient Record in Psychiatric Care

Cited by 3 publications

References 3 publications

Reasons for Acceptance or Rejection of Online Record Access Among Patients Affected by a Severe Mental Illness: Mixed Methods Study

Reasons for Acceptance or Rejection of Online Record Access Among Patients Affected by a Severe Mental Illness: Mixed Methods Study

Einstellungen und Erwartungen von psychologischen und ärztlichen Psychotherapeut*innen gegenüber Open Notes: Analyse qualitativer Survey-Antworten

Reasons for Acceptance or Rejection of Online Record Access Among Patients Affected by a Severe Mental Illness: Mixed Methods Study (Preprint)

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