Floor Sieverink

Clarifying the Concept of Adherence to eHealth Technology: Systematic Review on When Usage Becomes Adherence

Background In electronic health (eHealth) evaluations, there is increasing attention for studying the actual usage of a technology in relation to the outcomes found, often by studying the adherence to the technology. On the basis of the definition of adherence, we suggest that the following three elements are necessary to determine adherence to eHealth technology: (1) the ability to measure the usage behavior of individuals; (2) an operationalization of intended use; and (3) an empirical, theoretical, or rational justification of the intended use. However, to date, little is known on how to operationalize the intended usage of and the adherence to different types of eHealth technology. Objective The study aimed to improve eHealth evaluations by gaining insight into when, how, and by whom the concept of adherence has been used in previous eHealth evaluations and finding a concise way to operationalize adherence to and intended use of different eHealth technologies. Methods A systematic review of eHealth evaluations was conducted to gain insight into how the use of the technology was measured, how adherence to different types of technologies was operationalized, and if and how the intended use of the technology was justified. Differences in variables between the use of the technology and the operationalization of adherence were calculated using a chi-square test of independence. Results In total, 62 studies were included in this review. In 34 studies, adherence was operationalized as “the more use, the better,” whereas 28 studies described a threshold for intended use of the technology as well. Out of these 28, only 6 reported a justification for the intended use. The proportion of evaluations of mental health technologies reporting a justified operationalization of intended use is lagging behind compared with evaluations of lifestyle and chronic care technologies. The results indicated that a justification of intended use does not require extra measurements to determine adherence to the technology. Conclusions The results of this review showed that to date, justifications for intended use are often missing in evaluations of adherence. Evidently, it is not always possible to estimate the intended use of a technology. However, such measures do not meet the definition of adherence and should therefore be referred to as the actual usage of the technology. Therefore, it can be concluded that adherence to eHealth technology is an underdeveloped and often improperly used concept in the existing body of literature. When defining the intended use of a technology and selecting valid measures for adherence, the goal or the assumed working mechanisms should be leading. Adherence can then be standardized, which will improve the comparison of adherence rates to different technologies with the same goal and will provide insight into how adherence to different elements contributed to the outcomes.

The Added Value of Log File Analyses of the Use of a Personal Health Record for Patients With Type 2 Diabetes Mellitus: Preliminary Results.

Background: The electronic personal health record (PHR) is a promising technology for improving the quality of chronic disease management. Until now, evaluations of such systems have provided only little insight into why a particular outcome occurred. The aim of this study is to gain insight into the navigation process (what functionalities are used, and in what sequence) of e-Vita, a PHR for patients with type 2 diabetes mellitus (T2DM), to increase the efficiency of the system and improve the long-term adherence. Method: Log data of the first visits in the first 6 weeks after the release of a renewed version of e-Vita were analyzed to identify the usage patterns that emerge when users explore a new application. Results: After receiving the invitation, 28% of all registered users visited e-Vita. In total, 70 unique usage patterns could be identified. When users visited the education service first, 93% of all users ended their session. Most users visited either 1 or 5 or more services during their first session, but the distribution of the routes was diffuse. Conclusions: In conclusion, log file analyses can provide valuable prompts for improving the system design of a PHR. In this way, the match between the system and its users and the long-term adherence has the potential to increase.

Differences Between Patients With Type 2 Diabetes Mellitus Interested and Uninterested in the Use of a Patient Platform (e-VitaDM-2/ZODIAC-41)

Background: The prevalence of type 2 diabetes mellitus (T2DM) is rising in the Netherlands, and health care’s workload will increase. e-Health applications may increase patients’ participation in their care and could help reducing workload. To explore potential users, differences in patients interested and uninterested in e-Health are characterized. Methods: A prospective cohort study was initiated in the Drenthe region of the Netherlands. This study included inviting T2DM patients to use e-Health (the e-Vita platform). Patients were offered access to clinical data, laboratory results, educational modules, and a self-management support program. Data were obtained from health record systems of general practices and questionnaires. Results: Out of 2674 patients, 1378 (51.5%) participated in the study. Of the 1378 patients, 974 (70.7%) were interested in e-Health. Of 974, 405 (41.6%) were registered for e-Health. Interested patients were more often male, were younger, had shorter T2DM duration, and were higher educated. Of 405, 110 (27.2%) used the e-Health. No differences were found between users and nonusers of e-Health. Discussion: Patients interested in e-Health were more often male, were younger, had shorter T2DM duration, and were more often higher educated. However, even in this interested group, the actual participation rate remained low. Together with characteristics and attitudes of caregivers and T2DM patients, the look and content of the e-Health platform strategies that increase interest and participation need to be developed.

'heartfailurematters.org', an educational website for patients and carers from the Heart Failure Association of the European Society of Cardiology : Objectives, use and future directions

In 2007, the Heart Failure Association of the European Society of Cardiology (ESC) launched the information website heartfailurematters.org (HFM site) with the aim of creating a practical tool through which to provide advice and guidelines for living with heart failure to patients, their carers, health care professionals and the general public worldwide. The website is managed by the ESC at the European Heart House and is currently available in nine languages. The aim of this study is to describe the background, objectives, use, lessons learned and future directions of the HFM site.

Opening the black box of eHealth: Collecting, analyzing, and interpreting log data

In electronic health (eHealth) research, limited insight has been obtained on process outcomes or how the use of technology has contributed to the users’ ability to have a healthier life, improved well-being, or activate new attitudes in their daily tasks. As a result, eHealth is often perceived as a black box. To open this black box of eHealth, methodologies must extend beyond the classic effect evaluations. The analyses of log data (anonymous records of real-time actions performed by each user) can provide continuous and objective insights into the actual usage of the technology. However, the possibilities of log data in eHealth research have not been exploited to their fullest extent. The aim of this paper is to describe how log data can be used to improve the evaluation and understand the use of eHealth technology with a broader approach than only descriptive statistics. This paper serves as a starting point for using log data analysis in eHealth research. Here, we describe what log data is and provide an overview of research questions to evaluate the system, the context, the users of a technology, as well as the underpinning theoretical constructs. We also explain the requirements for log data, the starting points for the data preparation, and methods for data collection. Finally, we describe methods for data analysis and draw a conclusion regarding the importance of the results for both scientific and practical applications. The analysis of log data can be of great value for opening the black box of eHealth. A deliberate log data analysis can give new insights into how the usage of the technology contributes to found effects and can thereby help to improve the persuasiveness and effectiveness of eHealth technology and the underpinning behavioral models.

Correction for: Opening the Black Box of Electronic Health: Collecting, Analyzing, and Interpreting Log Data

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Opening the Black Box of eHealth : A Mixed Methods Approach for the Evaluation of Personal Health Records

With the growing prevalence of chronic diseases (such as type 2 diabetes mellitus, congestive heart failure, or COPD) ageing with one or more chronic diseases is becoming normal. Sustainable solutions are therefore needed to effectuate a transformation in health care delivery and to support the shifts from 1) institutionalized (secondary) care to (primary) home care; 2) acute episodic care to a more continuous chronic care; and 3) the patient as a passive recipient of care to an active patient who is able to self-manage. Technology-based innovations (such as eHealth) are major drivers in this transformation of care delivery. Personal Health Records (PHRs) for example, provide the opportunity for self‐management support and maintaining and/or improving the quality of chronic disease management by engaging patients in their own healthcare. However, despite the potential benefits of PHRs in chronic disease management, recent evidence regarding the effectiveness of PHRs for self‐management remains sparse. Most of the evaluations focus on the effectiveness of PHRs as stand‐alone, patient‐centered technologies in experimental trials. However, the implementation of eHealth is a multi‐level and complex process, and such evaluations do not provide insight into process outcomes or how the use of the different components of the technology has contributed to healthier living, improved wellbeing, or a user’s ability to conduct daily tasks. We call this ‘the black box of eHealth’. Creating and implementing sustainable eHealth technologies thus requires a holistic development and evaluation approach that takes into account the triad of the technology, its users and the context of implementation. This thesis focuses on the evaluation of the implementation of an electronic personal health record (PHR) for patients chronic diseases in a mixed methods approach. The first part of this thesis consists of two more fundamental chapters describing a systematic review to gain more insight into the concept of adherence, and a protocol for the analysis of real-time data regarding the use (log data) of the PHR. The second part of this thesis contains three chapters to gain insight into the actual implementation of e-Vita, the relation between the user and the technology and the influence of the context.