Bridging the Ehealth chasm - Towards a synergy between academia and practice in Ehealth implementation
Sofia Bastoni is a PhD student in the Department Psychology, Health & Technology. (Co)Promotors are prof.dr. J.E.W.C. van Gemert-Pijnen, prof.dr. R. Sanderman, dr. A. van Dongen from the Faculty of Behavioural, Management and Social Sciences and prof.dr. A. Gaggioli.
This thesis explores the dynamic intersection between psychology, eHealth, and implementation science. Its main aim is to investigate the implementation of eHealth and eMental health technologies, with a specific focus on the context of informal care. Furthermore, the studies included in this thesis took place during the COVID-19 pandemic that, apart from dramatically impacting everyone’s lives between 2020 and 2022, offered an interesting scenario to study implementation in. The chapters contained in this thesis have multiple foci and consider different angles, keeping the fil rouge of implementation of eHealth and eMental health technologies. More specifically, the thesis moves from the understanding that often eHealth is not reaching its full potential due to implementation issues (i.e. the eHealth chasm). Therefore, it aims at gaining insights into how to mitigate these issues by drawing from real life examples. As the title suggests, the chapters include both technologies developed by academia and practice, hinting at how a collaboration between the two might contribute to a better uptake of eHealth and eMental health technologies.
Chapter 1 provides the reader with contextual information and relevant scientific literature, scoping the problem statement. Specifically, the chapter begins by defining eHealth as the use of technology to support health, wellbeing, and healthcare, aiming to improve efficiency, patient safety, outcomes, and reduce costs. Then, it emphasizes the potential of eHealth in mental health, known as eMental health, and its utility in informal care settings. The next section delves into the critical role of informal caregivers, whom are individuals who provide care to chronically ill or frail persons. The chapter discusses the care gap problem, where the demand for caregivers is rising while the number of available caregivers is decreasing. Informal caregivers are also the backbone of healthcare systems, assisting with tasks ranging from household chores to medical management and emotional support. The chapter emphasizes the potential of eHealth technologies to support these caregivers, particularly in dementia care, by offering tools for knowledge enhancement, appointment management, and coping with negative emotions. The following section reflects on the context in which the studies in this thesis took place: the COVID-19 pandemic. In fact, digital solutions were employed during the pandemic to manage care processes and maintain communication between patients, caregivers, and healthcare providers amidst lockdowns and social isolation. Finally, the chapter introduces the concept of implementation, that is the gathering of all planned and intentional activities to effectively integrate new eHealth technologies into practice. It explains how implementation science, the discipline that systematize implementation, aims to turn evidence and ideas into policies and practices that are viable in real-world settings. Various implementation theories and frameworks are discussed, including the Diffusion of Innovations theory, the Consolidated Framework for Implementation Research (CFIR), and the NASSS framework. These frameworks help understand the factors influencing successful implementation and provide structured approaches to guide the process. The chapter ends with the problem statement and research questions. Although these and numerous other frameworks exist, there is still limited knowledge on how to use them in practice. Furthermore, eHealth still faces challenges of implementation. Therefore, the thesis aims at answering three main research questions.What kind of role did the COVID-19 on the uptake of digital technologies? What can we learn from real-life examples of implementation of eHealth during COVID-19?
- What kind of role did the COVID-19 on the uptake of digital technologies? What can we learn from real-life examples of implementation of eHealth during COVID-19?
- What are examples of successfully implemented eHealth technologies for informal caregivers and care recipients and what are lessons learned from their implementation?
- How are eHealth technologies developed and implemented inside and outside the academic setting? How are implementation frameworks used in practice and in academia?
Chapter 2 tries to capture a snapshot of psychosocial impact of the pandemic in Italy and the Netherlands, considering the difference in lockdown measures that they underwent. Secondly, it aims to provide a snapshot of the impact of COVID-19 on the uptake of new technology, therefore highlighting the potential of eHealth during isolation. As expected, there was a significant worsening of psychosocial variables such as life satisfaction, depressive moods and feelings, loneliness, need for psychosocial support and mental wellbeing during the COVID-19 pandemic compared to before. Surprisingly however, we found no significant difference between Italy and the Netherlands, although the Netherlands suffered much milder lockdown measures. The other main objective of this chapter was to gain insight into the usage of and satisfaction with digital communication tools and their relationship with changes in loneliness. The results highlighted an increase in usage, probably to maintain safe communication during lockdown. Also, there was an increase in satisfaction with more immersive communication tools, namely video-calling, while satisfaction with text messaging decreased. Finally, the increase of loneliness was correlated with the adoption of new digital tools, possibly suggesting an attempt to mitigate loneliness with communication tools. Our findings suggest that participants relied on communication technologies to maintain safe contact with their loved ones and were more likely to adopt new technologies when they were feeling lonelier, and that they generally preferred more immersive technologies. These results point in the direction of how the COVID-19 pandemic might have played a role in the uptake (and consequent implementation) of technologies.
Chapter 3 aims at giving an overview of available eHealth technologies for informal caregivers and care recipients, focusing on the specific subset of dementia care. This chapter draws mostly from academic literature, showing what is available in terms of implementation research. A broad range of technologies to support informal dementia care were found, and they can be characterized by their primary user group, differing in the level of involvement of informal caregivers. In fact, the chapter identifies technologies used by informal caregivers to technologies used between caregivers and people with dementia to technologies used by people with dementia. Within the first subset, we identified in-home and outdoor monitoring technologies (e.g. telecare and GPS), internet interventions for psychological support, and e-Learning for education and information. Within the second category, we identified technologies to facilitate communication and socialization and technologies for clinical testing (e.g. screening or diagnostic testing). Lastly, within technologies to be used by care recipients alone we identified technologies to support i) memory, orientation, and day structure, 2) leisure activities, 3) psychological interventions and 4) self- care behaviors (4). Regarding the use of frameworks, specifically the Non Adoption, Abandonment, Scale-Up, Spread and Sustainability (NASSS) framework (1) in literature, the information contained in the papers was not equally distributed across the domains of the framework. In fact, most reviews identified barriers related to the users and the technology itself, while less information was reported regarding the contextual elements, in both inner and outer sense. This chapter also provides a checklist of practical recommendations for the implementation of eHealth for dementia care.
The second half of the thesis includes different case studies, describing and extracting lessons learned from the existing technologies to support informal care. As an example of a technology that can be used jointly by the informal caregivers, care recipients, and in this case also care professionals, chapter 4 focuses on Caren, an integrated care platform, which allows the patient, caregivers, and care professionals to communicate and share care information and appointments safely on its portal. The chapter, building on the initial insights obtained with chapter 2, aims at extracting lessons learned from the continuous implementation of Caren during the COVID-19 pandemic. The Consolidated Framework for Implementation Research (CFIR) is employed as a categorization framework to organize lessons learned and provide practical advice for researchers and other stakeholders wishing to implement an integrated care platform or improve an existing implementation strategy. Regarding the inner setting domains, platform developers advise prompt internal communication and engagement strategies for end-users. Regarding intervention characteristics, they suggest investing in automated user support and large-scale communication features, hence promoting advanced technological features that improve workflow and communication. Regarding users, they suggest minding the fluctuations in user groups, due to large scale events such as pandemics, but also observe how social distancing might have been an encouraging element for the uptake of new technology. Regarding outer settings, they recommend addressing data transparency concerns in healthcare and investing in a self-sustainable business model. This chapter provides practical recommendations for the implementation of integrated care platforms.
Chapter 5 focused specifically on technologies to be used by the informal caregivers alone, to relieve negative symptoms associated with caregiving or gaining useful information. This chapter focuses on technologies that are available in the real world, and therefore arguably successfully implemented, originating both in academic and market settings. Key differences concerning efficacy testing and use of implementation frameworks were identified between eMental health technologies developed in academia and within the industry. As expected, most technologies successfully implemented and available outside of academia were not tested for efficacy. The few which were, were developed in academia and validated through rigid methods that do not account for individual differences (e.g. RCTs). Another expected result was the lack of familiarity of industry with implementation frameworks. However, some eHealth developers reported creating their own model. Also, structuring a business model and making maintenance agreements beforehand were considered to be crucial activities for a successful implementation.
Chapter 6 took a closer look at one of the cases included in chapter 5. More specifically, this study investigated “Make it Happen” (MiH), the implementation model developed by the eMental Health company Minddistrict. As a result, a comprehensive description of MiH and its 5 main phases was achieved, and strengths and points for improvement were identified by its users. The main results of this study highlight the importance of clear role division and stakeholder engagement in implementation processes. Furthermore, they highlight the importance of shared and complete understanding of what implementation entails, through the stakeholders involved. Finally, it encourages a reflection on research waste, and how to adapt existing implementation models would be a more efficient way than developing ones from scratch. This study also highlights the potential of a systematic and consistent collaboration between market and academia, in order to mitigate common implementation barriers. Building on this, the chapter proposes a collaboration framework for industry and academia, employing knowledge from implementation science but integrating implementation in design phases already.
Chapter 7, the general discussion, firstly recaps the main results of this thesis. Then, answers the research questions identified in chapter 1.
1) What kind of role did the COVID-19 on the uptake of digital technologies? What can we learn from real-life examples of implementation of eHealth during COVID-19?
Three main lessons learned can be derived. First, that the pandemic caused a general positive trend in the adoption of technologies. Secondly, disruptive and unwanted changes in the user groups, in the way of delivering care, and ultimately having no other option than the use of technology could provide opportunities for development that were not initially planned for. Therefore, eHealth developers both within and outside of academia should be reactive to those changes. Thirdly, that while having no other option than using technology might be an encouragement to start integrating eHealth into daily care practices, a strong fit with the user context and the support of the wider healthcare system seems like a necessary condition for maintaining the use on the long run.
2) What are examples of successfully implemented eHealth technologies for informal caregivers and care recipients and what are lessons learned from their implementation?
Chapter 3, 4 and 5 report different successful outcomes of implementing eHealth technologies for informal caregivers. As found in the umbrella review in chapter 3, these technologies can be grouped in technologies to be used i) by informal caregivers, ii) by informal caregivers and care recipients together and iii) by care recipients. The main lesson leaned from studying these technologies is that there is much more knowledge on the determinants of implementation that relate to the user perspective, or micro-level, rather than the organizational or wider contexts, or meso and macro levels. In other words, there is scarce attention in literature of contextual elements for successful implementation. Neglect of contextual elements and prevalence of individual outcomes and determinants of implementation in literature points in the direction of a possible misconception of implementation. While more research is necessary, the gap in contextual elements of implementation found also in this dissertation might be, the missing piece towards more successful implementation of eHealth.
3) How are eHealth technology developed and implemented in real life and academia? How are implementation frameworks used in practice and in academia?
A recurring result of this thesis is that information on the use of frameworks is often fragmented in academic literature. In fact, the studies in this thesis also how scholars and other professionals in the field of eHealth are still lacking a practical guideline to address implementation issues, while they have too many theoretical frameworks that they find themselves unequipped to apply. A greater attention to the multi-level implementation context and a participatory implementation and evaluation process is therefore necessary, focusing on the iterative (rather than stepwise) nature of implementation practices, focusing on a positive and complementary collaboration between academia and practice. In other words, an agile science approach that intertwines the implementation, and evaluation of eHealth technologies instead of keeping them as separate steps. Given the complementary nature of their strengths and weaknesses, and the similar challenges they face, a structured and planned collaboration between academia and practice could not only result in better overall quality products, but also ameliorate well-known implementation challenges described in the previous sections. To envision a possible structure for this collaboration, chapter 6 proposes an integration guideline to initiate a bidirectional collaborative effort between research and practice. This guideline is based on the existence of a multidisciplinary team performing co-design activities involving all relevant stakeholders, including, implementation experts. Within this multidisciplinary group, the development of the innovation takes place in a participatory fashion.
Main implications of this thesis are adding to the body of knowledge of implementation science, focusing on eHealth for informal care and real-life examples of technology. Secondly, practical guidelines and toolkits are practical outputs of this thesis.
