275 General discussion 9 more socio-economically disadvantaged individuals. In the ACCEPTANCE study protocol, we included follow-up telephone calls by the patient’s general practice as a recruitment strategy, to minimize the risk of including only those with controlled asthma en generally more willing to participate in clinical trials (chapter 5). Secondly, maintaining a collaborative team is crucial to foster and ensure effective communication (17). This can be achieved through regular communication with participants, having a familiar point of contact (e.g., a research assistant performing all study activities, chapter 5) and by providing transparency in design decisions. The design researcher (chapter 3) visited a community centre multiple times to first build trust before inviting people to participate in the study. People who were invited by their practice nurse to participate received a video with the design researcher introducing himself and explain in plain terms the purpose and set-up of the study activity. This helped establish familiarity and build trust (chapter 3). Lastly, it is important to take into account potential socio-economic barriers such as lack of transportation, financial constraints or limited access to healthcare facilities (15). We accommodated for this by performing the study activities at people’s houses (chapter 5 and 7) or at the neighbourhood’s community centre (chapter 3, chapter 5, and chapter 7), or by providing a financial compensation when study budget allowed it (chapter 5 and chapter 7). Thus, before embarking on a journey including socio-economically disadvantaged people as study participants or as active contributors, researchers should invest time, budget, and effort in establishing a meaningful collaboration and trust. Throughout the process, it is essential to report on and reflect upon the execution, documenting best practices and lessons learned. By doing so, we can ensure that eHealth solutions are designed with the needs and preferences of those who would benefit the most in mind and are evaluated with them. This is a vital step in working towards an equitable and inclusive digital health landscape, reducing health disparities, and improving health outcomes (Challenge Three, General introduction). Creating meaningful patient and public involvement Besides meaningful involvement of people in the design of eHealth, the importance of the involvement of patients (and public) in the set-up and execution of clinical research has become increasingly evident in the past two decades (18). This is reflected by the growing body of evidence on its value, the publication of guidelines on patient and public involvement (PPI), reporting standards and the inclusion of PPI as requirements by funding bodies and journals (19, 20). In our cluster RCT evaluating the effectiveness of an asthma inhaler programme (chapter 5), we established a patient advisory panel to provide input throughout the research process. Recognizing the novelty and complexity of the intervention, involving patients was crucial. The patient advisors provided valuable insights into study design, materials, and feasibility. They also contributed to improving communication, recruitment (e.g., through social media), and retention strategies. By involving patient advisors from the early stages, setting clear expectations, defining
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