Patients and family attitudes about clinical and research sharing of electronic clinical data.

PURPOSE: To access the attitudes of service users about the sharing of health records for research and to foster collaboration between municipal health services and the specialist health services in Norway. METHODS: Members (n ≈ 2000) of the Norwegian mental health service users' organizations (SUO's), ADHD Norway, the Autism Association and the Tourette Association, representing Central Norway, participated in the study, (N = 108, 5.4% response rate). Descriptive statistics were used to evaluate distributions of responses to the questionnaire. RESULTS: Service users reported being aware that municipal health services collaborate with the specialist health service (62%), with mental health care in the specialist health service (57%), and child and adolescent psychiatric services (61%). A large proportion of individuals were aware of the benefits of sharing their health records (93%), have trust in the use of data by health authorities (81%), and were willing to share records to benefit fellow patients (84%). Personal experience (69%) and impressions from mainstream media (55%) had the most influential impact on users' views of the Health Platform, an electronic health communication system. A majority of users had a negative perception of the Health Platform, even though some expect it to become a valuable tool in the future (50%). CONCLUSIONS: Service users are aware of and positive about benefiting others by sharing health records. They trust the health authorities, however, have negative attitudes about the Health Platform, apparently based on personal experiences and media influence. However, service users can see the potential usefulness of the Health Platform in the future.

A review of information sources and analysis methods for data driven decision aids in child and adolescent mental health services.

OBJECTIVE: Clinical data analysis relies on effective methods and appropriate data. Recognizing distinctive clinical services and service functions may lead to improved decision-making. Our first objective is to categorize analytical methods, data sources, and algorithms used in current research on information analysis and decision support in child and adolescent mental health services (CAMHS). Our secondary objective is to identify the potential for data analysis in different clinical services and functions in which data-driven decision aids can be useful. MATERIALS AND METHODS: We searched related studies in Science Direct and PubMed from 2018 to 2023(Jun), and also in ACM (Association for Computing Machinery) Digital Library, DBLP (Database systems and Logic Programming), and Google Scholar from 2018 to 2021. We have reviewed 39 studies and extracted types of analytical methods, information content, and information sources for decision-making. RESULTS: In order to compare studies, we developed a framework for characterizing health services, functions, and data features. Most data sets in reviewed studies were small, with a median of 1,176 patients and 46,503 record entries. Structured data was used for all studies except two that used textual clinical notes. Most studies used supervised classification and regression. Service and situation-specific data analysis dominated among the studies, only two studies used temporal, or process features from the patient data. This paper presents and summarizes the utility, but not quality, of the studies according to the care situations and care providers to identify service functions where data-driven decision aids may be relevant. CONCLUSIONS: Frameworks identifying services, functions, and care processes are necessary for characterizing and comparing electronic health record (EHR) data analysis studies. The majority of studies use features related to diagnosis and assessment and correspondingly have utility for intervention planning and follow-up. Profiling the disease severity of referred patients is also an important application area.

Economic evidence of clinical decision support systems in mental health: A systematic literature review.

Mental health conditions are among the highest disease burden on society, affecting approximately 20% of children and adolescents at any point in time, with depression and anxiety being the leading causes of disability globally. To improve treatment outcomes, healthcare organizations turned to clinical decision support systems (CDSSs) that offer patient-specific diagnoses and recommendations. However, the economic impact of CDSS is limited, especially in child and adolescent mental health. This systematic literature review examined the economic impacts of CDSS implemented in mental health services. We planned to follow PRISMA reporting guidelines and found only one paper to describe health and economic outcomes. A randomized, controlled trial of 336 participants found that 60% of the intervention group and 32% of the control group achieved symptom reduction, i.e. a 50% decrease as per the Symptom Checklist-90-Revised (SCL-90-R), a method to evaluate psychological problems and identify symptoms. Analysis of the incremental cost-effectiveness ratio found that for every 1% of patients with a successful treatment result, it added €57 per year. There are not enough studies to draw conclusions about the cost-effectiveness in a mental health context. More studies on economic evaluations of the viability of CDSS within mental healthcare have the potential to contribute to patients and the larger society.

Challenges in Interpreting Norwegian Child and Adolescent Mental Health Records.

The Electronic Health Record system BUPdata served Norwegian Child and Adolescent Mental Health Services (CAMHS) for over 35 years and is still an important source of information for understanding clinical practice. Secondary usage of clinical data enables learning and service quality improvement. We present some insights from explorative data analysis for interpreting the records of patients referred for hyperkinetic disorders. The major challenges were data preparation, pre-analysis, imputation, and validation. We summarize the main characteristics, spot anomalies, and detect errors. The results include observations about the patient referral diversity based on 12 different variables. We modeled the activities in an individual episode of care, described our clinical observations among data, and discussed the challenges of data analysis.

Usability of the IDDEAS prototype in child and adolescent mental health services: A qualitative study for clinical decision support system development.

Introduction: Child and adolescent mental health services (CAMHS) clinical decision support system (CDSS) provides clinicians with real-time support as they assess and treat patients. CDSS can integrate diverse clinical data for identifying child and adolescent mental health needs earlier and more comprehensively. Individualized Digital Decision Assist System (IDDEAS) has the potential to improve quality of care with enhanced efficiency and effectiveness. Methods: We examined IDDEAS usability and functionality in a prototype for attention deficit hyperactivity disorder (ADHD), using a user-centered design process and qualitative methods with child and adolescent psychiatrists and clinical psychologists. Participants were recruited from Norwegian CAMHS and were randomly assigned patient case vignettes for clinical evaluation, with and without IDDEAS. Semi-structured interviews were conducted as one part of testing the usability of the prototype following a five-question interview guide. All interviews were recorded, transcribed, and analyzed following qualitative content analysis. Results: Participants were the first 20 individuals from the larger IDDEAS prototype usability study. Seven participants explicitly stated a need for integration with the patient electronic health record system. Three participants commended the step-by-step guidance as potentially helpful for novice clinicians. One participant did not like the aesthetics of the IDDEAS at this stage. All participants were pleased about the display of the patient information along with guidelines and suggested that wider guideline coverage will make IDDEAS much more useful. Overall, participants emphasized the importance of maintaining the clinician as the decision-maker in the clinical process, and the overall potential utility of IDDEAS within Norwegian CAMHS. Conclusion: Child and adolescent mental health services psychiatrists and psychologists expressed strong support for the IDDEAS clinical decision support system if better integrated in daily workflow. Further usability assessments and identification of additional IDDEAS requirements are necessary. A fully functioning, integrated version of IDDEAS has the potential to be an important support for clinicians in the early identification of risks for youth mental disorders and contribute to improved assessment and treatment of children and adolescents.

Success Factors of an Early EHR System for Child and Adolescent Mental Health: Lessons Learned for Future Practice Data-Driven Decision Aids.

This paper recounts the successful BUPdata, a discontinued electronic health record (EHR) system for Child and Adolescent Mental Health Services (CAMHS) in Norway. It was developed and owned by the national association for CAMHS and fulfilled needs for collaborative care, practice insight, and service management. It aimed to unify the requirements of government, administration, clinicians, patients, and researchers alike, with the goal of providing uniform quality of care nationally. When CAMHS became integrated with specialist healthcare, BUPdata was replaced with more a general EHR system offering far less functionality and insight into CAMHS practice. We have studied BUPdata, and interviewed stakeholders in order to develop decision aids based on practice data analysis and give clinicians and patients insight into successful local practice, collaboration patterns, and overview of local resources.

Attitudes of Mental Health Service Users Toward Storage and Use of Electronic Health Records.

OBJECTIVE: Electronic health records (EHRs) are used for both clinical practice and research. Because mental health service users' views are underrepresented in perspectives on EHR use, the authors examined service users' awareness, attitudes, and opinions about EHR data storage and sharing. METHODS: A mixed-methods, cross-sectional design was used to examine attitudes of 253 Norwegian mental health service users who were recruited online to complete a quantitative and qualitative (free-text) survey about EHR utilization. RESULTS: Most participants were aware that EHRs were stored (95%) and shared (58%). Most thought that patients benefited from EHR storage (84%), trusted authorities with EHR sharing (71%), were willing to share their EHRs to help others (75%), felt they benefited from EHR sharing (75%), and thought EHR sharing was ethical for health care and research (71%). Fewer were aware of EHR sharing for research (36%), and 62% were aware that shared data were anonymized. Of the participants, 69% recognized privacy risks associated with sharing. Lack of transparency and skepticism about anonymization and misuse of EHR data were concerns and perceived risks. Mental health service users thought that EHRs should be shared for policy development (81%), education and training (85%), improving care quality (89%), research (91%), and clinical decision support (81%). CONCLUSIONS: Participants were aware of and supported EHR sharing for research and clinical care. They supported sharing to help others and were willing to fully participate in clinical care and research, as well as to share EHR information for their own care, research, and the care of others.

Testing an individualized digital decision assist system for the diagnosis and management of mental and behavior disorders in children and adolescents.

BACKGROUND: Nearly half of all mental health disorders develop prior to the age of 15. Early assessments, diagnosis, and treatment are critical to shortening single episodes of care, reducing possible comorbidity and long-term disability. In Norway, approximately 20% of all children and adolescents are experiencing mental health problems. To address this, health officials in Norway have called for the integration of innovative approaches. A clinical decision support system (CDSS) is an innovative, computer-based program that provides health professionals with clinical decision support as they care for patients. CDSS use standardized clinical guidelines and big data to provide guidance and recommendations to clinicians in real-time. IDDEAS (Individualised Digital DEcision Assist System) is a CDSS for diagnosis and treatment of child and adolescent mental health disorders. The aim of IDDEAS is to enhance quality, competency, and efficiency in child and adolescent mental health services (CAMHS). METHODS/DESIGN: IDDEAS is a mixed-methods innovation and research project, which consists of four stages: 1) Assessment of Needs and Preparation of IDDEAS; 2) The Development of IDDEAS CDSS Model; 3) The Evaluation of the IDDEAS CDSS; and, 4) Implementation & Dissemination. Both qualitative and quantitative methods will be used for the evaluation of IDDEAS CDSS model. Child and adolescent psychologists and psychiatrists (n = 30) will evaluate the IDDEAS` usability, acceptability and relevance for diagnosis and treatment of attention-deficit/hyperactivity disorder. DISCUSSION: The IDDEAS CDSS model is the first guidelines and data-driven CDSS to improve efficiency of diagnosis and treatment of child and adolescent mental health disorders in Norway. Ultimately, IDDEAS will help to improve patient health outcomes and prevent long-term adverse outcomes by providing each patient with evidence-based, customized clinical care. TRIAL REGISTRATION: ISRCTN, ISRCTN12094788. Ongoing study, registered prospectively 8 April 2020 https://doi.org/10.1186/ISRCTN12094788.

Local, Early, and Precise: Designing a Clinical Decision Support System for Child and Adolescent Mental Health Services.

Mental health disorders often develop during childhood and adolescence, causing long term and debilitating impacts at individual and societal levels. Local, early, and precise assessment and evidence-based treatment are key to achieve positive mental health outcomes and to avoid long-term care. Technological advancements, such as computerized Clinical Decision Support Systems (CDSSs), can support practitioners in providing evidence-based care. While previous studies have found CDSS implementation helps to improve aspects of medical care, evidence is limited on its use for child and adolescent mental health care. This paper presents challenges and opportunities for adapting CDSS design and implementation to child and adolescent mental health services (CAMHS). To highlight the complexity of incorporating CDSSs within local CAMHS, we have structured the paper around four components to consider before designing and implementing the CDSS: supporting collaboration among multiple stakeholders involved in care; optimally using health data; accounting for comorbidities; and addressing the temporality of patient care. The proposed perspective is presented within the context of the child and adolescent mental health services in Norway and an ongoing Norwegian innovative research project, the Individualized Digital DEcision Assist System (IDDEAS), for child and adolescent mental health disorders. Attention deficit hyperactivity disorder (ADHD) among children and adolescents serves as the case example. The integration of IDDEAS in Norway intends to yield significantly improved outcomes for children and adolescents with enduring mental health disorders, and ultimately serve as an educational opportunity for future international approaches to such CDSS design and implementation.