WHO, WHEN, HOW – GUIDING THE ACTIVE INVOLVEMENT OF STAKEHOLDERS IN EHEALTH ACTION RESEARCH
Kira Oberschmidt is a PhD student in the department Biomedical Signals and Systems. Promotors are dr.ir. M. Tabak and dr. C. Grunloh from the Faculty of Electrical Engineering, Mathematics and Computer Science EEMCS.
Action Research (AR) is a collaborative research approach in which stakeholders play an active role as co-researchers. AR takes place in a community, in cycles of planning, action and reflection. While making a change in practice, AR also aims to extend scientific knowledge. AR fits the context of eHealth research well, as its key elements can hopefully ensure a better match between the technology being developed or implemented and the needs of relevant stakeholders. Ideally, stakeholders should take on a very active role and shape the research. However, oftentimes, neither the researcher nor the stakeholders are used to working in this way. Therefore, support is needed in terms of sharing knowledge, best practices and lessons learned between projects. Yet, in AR publications explicit reflection and description of these lessons learned is often missing. This makes it difficult for AR projects to learn from each other. To provide guidance for researchers setting up their project, and specifically to support the active involvement of stakeholders, the aim of this thesis is to develop a framework on stakeholder involvement in eHealth AR projects.
In the first part of this thesis, the State of the Art is described. The introduction provides some rationale for the aim of this thesis, and a description of the projects in which this research was conducted is given. In Chapter 2 the results of a literature review on AR in eHealth projects are presented. The aim of this review was to get an overview of current eHealth AR, specifically looking at how the research is conducted, instead of focusing on outcomes. We investigated the context of these projects, how they define and conduct AR, and which best practices and lessons learned they draw. We found that oftentimes reporting on the conduction of, and reflection on, AR in eHealth projects is lacking. Other important findings were the need for stakeholder skill and confidence training, the various roles that researchers take on in AR projects and the importance of constant reflection.
The second part of this thesis looks at different levels or roles of involvement in research projects, independent of the type of stakeholder that fulfils each role. The part starts by looking at researchers, as stakeholder involvement will not be initiated if they are unwilling to do so. Therefore, in the first chapter of this part, Chapter 3, we studied novice action researchers' attitude towards AR. The goal of this study was to understand how researchers new to AR perceive the approach and whether they are able to implement it in practice. We introduced AR to researchers, and asked them to identify benefits, risks and mitigation actions they foresaw for their project. The chapter outlines the methods that we used, as well as the novice action researchers' perceptions of AR. Our main finding was that researchers have a positive attitude towards AR, while being able to foresee potential risks. Knowledge sharing sessions were perceived as useful and greatly valued.
In Chapter 4 we move on to look at `champions' in AR projects. We followed the champions in several different pilots of a project over the course of the project, with the goal of investigating how they see their role and whether this changes over the course of the project. Based on the outcomes, we give recommendations for identifying and involving champions in research projects. Enthusiasm and acting as a glue between parties were important characteristics of champions. They value having the freedom to shape their role and tasks, which enables them to make a change in their organisation or the project.
Next, Chapter 5 presents a study in which we investigated the motivation of stakeholders participating in long-term, time-consuming research projects like AR. The aim of this study was to identify ways of keeping participants motivated in such projects. We asked participants in two different research projects about their motivation for taking part in the study. The chapter includes a discussion of motivating factors and provides recommendations for keeping participants engaged and motivated during a project, like continuing to monitor and manage expectations and enabling communication between participants.
Chapter 6 looks at the involvement of the general public, as outsiders to a project. As opposed to the previous chapter, in this chapter our goal was to identify how to involve participants unplanned and spontaneously. We explored the usefulness of a specific methodology - the flash mob method: fast-paced and practice-situated studies. We tested this method in two different projects, and through observations and reflection, we provide recommendations for implementing the method in AR projects. For example, attention should be paid to awareness raising and outreach through the flash mob, and insiders can help engage the target group.
The third part of this thesis looks at how the stakeholders involved in a project interact and communicate with each other, and how researchers can help facilitate this process. This part takes on several topics related to the communication and interaction between collaborating stakeholders, specifically looking at what researchers can do to facilitate such processes. In the first chapter of this section, Chapter 7, we studied the alignment of interests and needs of different stakeholders in a project, in terms of what they want to achieve from the project (content-wise). The aim of this study was to describe how stakeholders can be brought to agreement in a project. Following from a case study involving older adults, technology developers and researchers, the chapter proposes different recommendations for aligning stakeholders throughout the project. Specifically, open and explicit conversations and mapping the different interests can be useful activities.
Chapter 8 provides a reflection tool for collaborative reflection with stakeholders, both on content and process level. The aim of this work was to provide a structured way for researchers to reflect together with project partners. We iteratively developed this tool with several pilots of an AR project, who tested the tool and provided feedback. The tool focuses on the general process, the research process and future activities, while also including outcomes from previous reflections.
The focus of Chapter 9 is on the process level of stakeholder interaction. Our aim was to investigated important elements of stakeholder skill training. This chapter discusses the outcomes of a workshop with researchers experienced in such training activities. We raise some questions that should be considered when planning stakeholder skill training, for example how to deal with power dynamics and hierarchies, how mutual learning can be facilitated and how skill training can be made accessible.
In the last chapter of this part, Chapter 10, an iterative method for patient involvement is described. The aim of this study was to develop a method that other projects can use to map patient values along the patient journey. The method itself is described, along with a case study from the rehabilitation care sector. By combining different data collection methods in several phases, retrospective and in situ data is collected to give a more complete picture of the patient journey. This can help in the design and implementation of eHealth technologies, to ensure an even better fit with the context.
The final part of this thesis synthesises the results that were described in the preceding chapters. First I present a framework for stakeholder involvement in eHealth AR projects (Chapter 11). The framework describes important topics to consider in such a project, taking into account the recommendations made throughout this thesis. The framework includes short descriptions for each step in the process, questions that researchers can ask themselves and background material, for example links to potential methods. In the final chapter of this thesis (Chapter 12), I discuss the results and give an outlook on future research. The chapter also includes a reflection on my research and findings and their application in future eHealth AR projects.
