Tailored e-Health services for the dementia care setting: a pilot study of ‘eHealthMonitor’

Abstract

BackgroundThe European eHealthMonitor project (eHM) developed a user-sensitive and interactive web portal for dementia care: the eHM Dementia Portal (eHM-DP). It aims to provide targeted and personalized support for informal caregivers of people with dementia in a home-based care setting. The objective of the pilot study was to obtain feedback on the eHM-DP from two user perspectives (caregivers and medical professionals), focusing on caregiver empowerment, decision aid, and the perceived benefits of the eHM-DP.MethodsThe study on the eHM-DP was conducted from March 2014 to June 2014. The methodological approach followed a user-participatory design with a total number of 42 participants. The study included caregivers of people with dementia and medical professionals (MPs) from the metropolitan region of Erlangen-Nürnberg (Bavaria, Germany). Study participants were interviewed face-to-face with semi-structured, written interviews.ResultsCaregivers indicated a high degree of perceived support by the eHM-DP and of provided decision aid. In total, 89 % of caregivers and 54 % of MPs would use the eHM-DP if access were provided. The primary benefits participants perceived were the acquisition of individualized information, computerized interaction between caregivers and MPs, empowerment in health-related decisions and comprehensive insights into the progress of the disease. Major recommendations for improving the eHM-DP encompassed: an active search functionality based on predefined terms, the implementation of a chatroom for caregivers, an upload function and alerts for MPs, as well as the overall design.ConclusionsOur study is the first to have provided new insights and results on an interactive and needs-oriented web portal, endeavouring towards empowerment and assistance in decision making for caregivers as well as MPs within the realm of caring for patients with dementia. The acceptance and willingness to use the eHM-DP emphasizes the potential of eHealth services for community-based dementia care settings.Electronic supplementary materialThe online version of this article (doi:10.1186/s12911-015-0182-2) contains supplementary material, which is available to authorized users.

Evidence-Based Evaluation of eHealth Interventions: Systematic Literature Review

“…However, concerning case studies, all conducted evaluation at the end of the intervention. Although several aspects of evaluation have been found in conceptual articles [32][33][34][35][36][37][38][39]41], the case studies mostly evaluated clinical [20,[42][43][44][46][47][48][49][52][53]55,[59][60][61][64][65], and human/social aspects [42,[46][47][48][49][53][54][55]59,61,63,65].…”

Shared decision-making using personal health record technology: a scoping review at the crossroads

“…research has focused on one or a few of the SDM elements and not on the complete process. Articles in the review focused, by way of differing PHR architectural and functional designs, on such topics as the provision of alerts for the identification of a decision-making opportunity [36], patient access to health information and educational resources to support informed decision-making [50], provision of decision support tools to aid the patient with informed choice[ [22], [38], [45], or varying communications functionality to support online patient-provider interactions for decision-making [53].…”

“…One article specifically identified the relevance of personalizing decision support and action planning with a combination of the patient medical profile, preferences and goals, and provider recommendations [27]; however, in common with the few other articles that identified the importance of patient preferences to guide action, previously collected patient preferences are often used to guide the decision making rather than an elicitation of preferences in context of all factors for the decision at hand, at that point in time. While the inclusion of decision aids in PHRs to support patients with decisions by weighing the benefits, harms and scientific uncertainties improve outcomes [38], [47], its use has been limited and varied, and depends on the complexity and intelligence of the integrated decision support system [22], [23]. Computer tailoring a decision aid based on the patient clinical profile and clinical practice guidelines, and delivered in a meaningful way to explain outcomes and probabilities to patients has proved challenging and hence the computerized, generic paper form was often the default [23]; yet, decision-support services in the form of context specific decision aids are the future of decision making [49].…”

“…Only 4 articles examined a PHR whose functionality met all four SDM elements and not a single article in the review had a PHR which operated using all SDM-enabled functionality as identified by the PHR functional subcategories. [28] , [29] , [21] , [30] , [23] , [31] , [32] , [33] , [34] , [35] , [5] , [36] , [37] , [38] , [25] 14 reminders [26] , [23] , [31] , [22] , [24] , [27] , [20] , [39] , [34] , [35] , [5] , [36] , [8] , [37] 1 SDM infobutton -initiate and track [28] Options 23 personalized decision support [28] , [29] , [21] , [26] , [23] , [31] , [40] , [22] , [32] , [41] , [27] , [42] , [33] , [20] , [39] , [34] , [35] , …”

The challenge of involving elderly patients in primary care by using an electronic communication tool with their professionals: a mixed methods study

“…In this study, a tool that had been shown to be feasible for professionals was offered to patients without making many adjustments. Other studies show that modifying language is not necessary 10 , 35. The benefits of having information surmount language problems; however, tailoring of content is recommendable.…”