Background:Patients with long-term conditions (LTCs), including many RMDs, often require continuous management of care. Patient-generated health data (PGHD) collected between visits could inform ongoing care management and provide important insights into patient health and well-being. There is increasing interest in integrating PGHD in electronic health records (EHRs). However, integration is still largely aspirational with limited evidence of successful systems.Objectives:To map the landscape of EHR-integrated remote symptom monitoring systems in the field of LTCs. The objectives were to 1) characterise state of the art systems, 2) describe their clinical use, and 3) outline anticipated and realized benefits for clinical practice.Methods:A systematic search was conducted in three electronic databases up until November 2019. Titles and abstracts were independently screened by two reviewers. One reviewer screened full-text articles, identified those relevant for review and extracted data. Inclusion criteria included 1) symptom reporting systems in adult patients suffering a LTC, 2) integration of data into the EHR, 3) symptom data collected remotely, 4) evidence of use in clinical care. We did not exclude studies based on study design, quality, or sample size. Synthesis focused on describing system specifications and their use. For objective three we adopted a list of outcome indicators [1], which each of the studies were assessed against.Results:The initial search yielded 2040 articles. Only 12 studies reporting on ten unique systems were identified. Two systems were used in rheumatology, but the majority were used in oncology. Systems were highly heterogeneous in terms of technical and functional specifications. Nine systems were fully integrated (data viewable in the EHR) while the remaining system represented a partial integration (data viewable via link in the EHR). Five systems allowed repeated data collection at pre-defined intervals between visits with frequencies varying from daily to monthly. The remaining five made a single request before a scheduled clinic visit. The number of items requested from patients ranged from 9-48 per session. We identified three different clinical workflows: Simple (data only used during consultation, n=5), moderate (real-time alerts for providers when severe symptoms were reported, n=4) and on-demand (patient-initiated visits, n=1). Benefits of symptom reporting from each of the studies were categorised as anticipated, realized quantitative, and realized qualitative. We present summarised counts of these benefits in Figure 1. The most common anticipated benefits were better communication, changes to patient management and improved health outcomes. Most common realized benefits were detecting unrecognised problems and changes to patient management.Figure 1.Summarized counts of benefits from each included study assessed against Chen et al.’s 10 outcome indicators. Categorized in anticipated (orange), realized quantitative (light purple), and realized qualitative benefits (dark purple).Conclusion:There is growing interest and urge for integrating symptom data in the EHR and clinical care. Yet, this review has illustrated that there are limited published efforts to learn from. The heterogeneity in approaches underpins the need for a common framework. There is growing evidence from qualitative work in support of remote symptom-reporting in enabling better and patient-centred care in LTCs. The next step will be for robust, quantitative studies to provide evidence of benefits.References:[1]Chen J, Ou L, Hollis SJ. A systematic review of the impact of routine collection of patient reported outcome measures on patients, providers and health organisations in an oncologic setting. BMC Health Serv Res. 2013 Jun 11;13:211.Disclosure of Interests:Julie de Fonss Gandrup: None declared, Syed Mustafa Ali: None declared, Sabine van der Veer: None declared, John McBeth: None declared, William Dixon Consultant of: Bayer and Google
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