Exploration of the Voice of the Patient in Learning Health Systems: A Socio-Technical Perspective.

Despite learning health systems' focus on including the patients in improving healthcare services, research shows they are still considered participants, not partners. This article aims to provide practical guidance for recognizing and including the Voice of the Patient (VoP) as data in a continuous LHS by describing how the VoP can present itself, how it can be incorporated into the LHS and the barriers and enablers for doing so. Five key domains were identified to consider when including the patient perspective. The use of technology could be a facilitator for patients to provide their perspectives. However, there is a risk of increased health inequity by reducing the VoP of patients with low health or digital literacy.

The Knowledge of Implementation Strategies: Impact of the Installed Base.

This study uses three case studies to investigate how the installed base affects Electronic Health Records (EHR) implementation in European hospitals: i) transition from paper-based records to EHRs; ii) replacement of an existing EHR with a similar system; and iii) replacing existing EHR system with a radically different one. Using a meta-analysis approach, the study employs the theoretical framework of Information Infrastructure (II) to analyze user satisfaction and resistance. Results show that the existing infrastructure and time factor significantly impact EHR outcomes. Implementation strategies that build upon the current infrastructure and offer immediate user benefits yield higher satisfaction rates. The study highlights the importance of considering the installed base and adapting implementation strategies to maximize EHR system benefits.

A Review of Requirements for Information Models in Learning Health Systems.

Learning Health System (LHS) and integrated care are challenged due to a fragmented health data landscape. An information model is agnostic to the underlying data structures and can potentially contribute to mitigating some of the gaps. In a research project, Valkyrie, we are exploring how metadata can be organized and used to promote service coordination and interoperability across levels of care. An information model is viewed as central in this context and as a future integrated LHS support. We examined the literature regarding property requirements for data, information and knowledge models in the context of semantic interoperability and an LHS. The requirements were elicited and synthesized into five guiding principles as a vocabulary to inform the information model design of Valkyrie. Further research on requirements and guiding principles for information model design and evaluation are welcomed.

Information Models Properties in Learning Health Systems: A Literature Review.

Learning Health Systems (LHS) are challenged by fragmented health data. In Valkyrie, information models (IM) are explored as translators for the underlying, fragmented data structures and can potentially extend to support a future LHS. In this paper, a literature review was performed to search for property requirements for semantic interoperable IMs in the context of an LHS. The literature was examined and property requirements elicited in the context of an LHS.

User Satisfaction with Recently Deployed Electronic Health Records.

The high investments in deploying a new Electronic Health Record (EHR) make it necessary to understand its effect on usability (effectiveness, efficiency, and user satisfaction). This paper describes the evaluation process related to user satisfaction over data gathered from three Northern Norway Health Trust hospitals. A questionnaire gathered responses about user satisfaction regarding the newly adopted EHR. A regression model reduces the number of satisfaction items from 15 to nine, where the result represents user EHR Features Satisfaction. The results show positive satisfaction with the newly introduced EHR, a result of proper EHR transition planning and the previous experience of the vendor with the hospitals involved.

Impact on patient-provider relationship and documentation practices when mental health patients access their electronic health records online: a qualitative study among health professionals in an outpatient setting.

BACKGROUND: Patient accessible electronic health records (PAEHR) hold the potential to increase patient empowerment, especially for patients with complex, long-term or chronic conditions. However, evidence of its benefits for patients who undergo mental health treatment is unclear and inconsistent, and several concerns towards use of PAEHR emerged among health professionals. This study aimed at exploring the impact of PAEHR among mental health professionals in terms of patient-provider relationship, changes in the way of writing in the electronic health records and reasons for denying access to information. METHODS: In-depth qualitative interviews with health professionals working in two mental health outpatient clinics at Helgelandssykehuset in Northern Norway, one of the first hospitals in Norway to implement the PAEHR in 2015. The interviews were conducted by phone or videoconferencing, audio recorded and transcribed verbatim. Data were analyzed by a multidisciplinary research team using the Framework Method. RESULTS: A total of 16 in-depth qualitative interviews were conducted in April and May 2020. The PAEHR implemented in Norway was seen as a tool to increase transparency and improve the patient-provider relationship. The PAEHR was seen to have negative consequences only in limited situations, such as for patients with severe mental conditions, for child protective services when parents access their children's journal, or for patients with abusive partners. The functionality to deny access to the journal was used rarely. A more common practice for making information not immediately available was to delay the final approval of the notes. The documentation practices changed over the years, but it was not clear to what extent the changes were attributable to the introduction of the PAEHR. Health professionals write their notes keeping in mind that patients might read them, and they try to avoid unclear language, information about third parties, and hypotheses that might create confusion. CONCLUSIONS: The concerns voiced by mental health professionals regarding the impact of the PAEHR on the patient-provider relationship and practices to deny access to information were not supported by the results of this study. Future research should explore changes in documentation practices by analysing the content of the electronic health records.

Dismantling, optimising, and personalising internet cognitive behavioural therapy for depression: a systematic review and component network meta-analysis using individual participant data.

BACKGROUND: Internet cognitive behavioural therapy (iCBT) is a viable delivery format of CBT for depression. However, iCBT programmes include training in a wide array of cognitive and behavioural skills via different delivery methods, and it remains unclear which of these components are more efficacious and for whom. METHODS: We did a systematic review and individual participant data component network meta-analysis (cNMA) of iCBT trials for depression. We searched PubMed, PsycINFO, Embase, and the Cochrane Library for randomised controlled trials (RCTs) published from database inception to Jan 1, 2019, that compared any form of iCBT against another or a control condition in the acute treatment of adults (aged ≥18 years) with depression. Studies with inpatients or patients with bipolar depression were excluded. We sought individual participant data from the original authors. When these data were unavailable, we used aggregate data. Two independent researchers identified the included components. The primary outcome was depression severity, expressed as incremental mean difference (iMD) in the Patient Health Questionnaire-9 (PHQ-9) scores when a component is added to a treatment. We developed a web app that estimates relative efficacies between any two combinations of components, given baseline patient characteristics. This study is registered in PROSPERO, CRD42018104683. FINDINGS: We identified 76 RCTs, including 48 trials contributing individual participant data (11 704 participants) and 28 trials with aggregate data (6474 participants). The participants' weighted mean age was 42·0 years and 12 406 (71%) of 17 521 reported were women. There was suggestive evidence that behavioural activation might be beneficial (iMD -1·83 [95% credible interval (CrI) -2·90 to -0·80]) and that relaxation might be harmful (1·20 [95% CrI 0·17 to 2·27]). Baseline severity emerged as the strongest prognostic factor for endpoint depression. Combining human and automated encouragement reduced dropouts from treatment (incremental odds ratio, 0·32 [95% CrI 0·13 to 0·93]). The risk of bias was low for the randomisation process, missing outcome data, or selection of reported results in most of the included studies, uncertain for deviation from intended interventions, and high for measurement of outcomes. There was moderate to high heterogeneity among the studies and their components. INTERPRETATION: The individual patient data cNMA revealed potentially helpful, less helpful, or harmful components and delivery formats for iCBT packages. iCBT packages aiming to be effective and efficient might choose to include beneficial components and exclude ones that are potentially detrimental. Our web app can facilitate shared decision making by therapist and patient in choosing their preferred iCBT package. FUNDING: Japan Society for the Promotion of Science.

Evaluating the translation process of an Internet-based self-help intervention for prevention of depression: a cost-effectiveness analysis.

BACKGROUND: Depression is common and treatable with cognitive behavior therapy (CBT), for example. However, access to this therapy is limited. Internet-based interventions have been found to be effective in reducing symptoms of depression. The International Society for Research on Internet Interventions has highlighted the importance of translating effective Internet programs into multiple languages to enable worldwide dissemination. OBJECTIVE: The aim of the current study was to determine if it would be cost effective to translate an existing English-language Internet-based intervention for use in a non-English-speaking country. METHODS: This paper reports an evaluation of a trial in which a research group in Norway translated two English-language Internet-based interventions into Norwegian (MoodGYM and BluePages) that had previously been shown to reduce symptoms of depression. The translation process and estimates of the cost-effectiveness of such a translation process is described. Estimated health effect was found by using quality-adjusted life years (QALY). RESULTS: Conservative estimates indicate that for every 1000 persons treated, 16 QALYs are gained. The investment is returned 9 times and the cost-effectiveness ratio (CER) is 3432. The costs of the translation project totaled to approximately 27% of the estimated original English-language version development costs. CONCLUSIONS: The economic analysis shows that the cost-effectiveness of the translation project was substantial. Hopefully, these results will encourage others to do similar analyses and report cost-effectiveness data in their research reports.

Evaluating the effectiveness and efficacy of unguided internet-based self-help intervention for the prevention of depression: a randomized controlled trial.

The Internet has the potential to increase the capacity and accessibility of mental health services. This study aimed to investigate whether an unguided Internet-based self-help intervention delivered without human support or guidance can reduce symptoms of depression in young people at risk of depression. The study also aimed to explore the usage of such sites in a real-life setting, to estimate the effects of the intervention for those who received a meaningful intervention dose and to evaluate user satisfaction. Young adults were recruited by means of a screening survey sent to all students at the University of Tromsø. Of those responding to the survey, 163 students (mean age 28.2 years) with elevated psychological distress were recruited to the trial and randomized to an Internet intervention condition or the waiting list control group. The Internet condition comprised a depression information website and a self-help Web application delivering automated cognitive behavioural therapy. The participants in the waiting list condition were free to access formal or informal help as usual. Two-thirds of the users who completed the trial initially reported an unmet need for help. The findings demonstrated that an unguided intervention was effective in reducing symptoms of depression and negative thoughts and in increasing depression literacy in young adults. Significant improvements were found at 2-month follow up. Internet-based interventions can be effective without tracking and thus constitute a minimal cost intervention for reaching a large number of people. User satisfaction among participants was high.