ExPEERience

Abstract

In this graduation thesis I investigate how to design for patient empowerment in the context of head and neck cancer (HNC) patients in their follow-up phase (the first 5 years after treatment). This project is set up with the Erasmus MC and was initiated to elaborate on their current service called the Healthcare Monitor (HM). The HM is a structure of electronic patient-reported outcome measures filled in by patients before every follow-up consultation. The answers are shown in a dashboard to the treating physician and used during patient consultations (Dronkers et al., 2020). What the current HM lacks however, is insight for the patients themselves into their health and addressing their concerns in between the consultations. Therefore this project aims to develop an additional service to the HM that empowers patients in between consults whilst also providing the doctor with a more frequent and realistic insight into their wellbeing. Patient empowerment can ultimately lead to a better quality of life. In this project it is viewed as a process that can be influenced through design. Therefore an inspirational model is created in this thesis that designers can use when designing for patient empowerment. HNC patients in their follow-up need to deal with a lot of different physical and psychosocial side effects (Aguilar et al., 2017). I investigate their concerns using the double loop method of Jung (2021). I analyze the community context through a computational analysis of online cancer community platforms. The patient context is investigated through a focus group with 6 care professionals and interviews with 9 ex-patients. 4 main concerns are found. Patients want to: •Be prepared for what they can expect and do •Have the overview of how they are doing •Be supported when they have a doubt •Have a relevant service for them The model for patient empowerment and patient concerns are combined to create a design vision. The vision is to provide patients with an overview that enables them to gain more control in dealing with issues that concern them. This overview was designed in a prototype application through 3 main elements; a logbook with previous experiences, a possibility to track current experiences and an overview of expected experiences based on peer experiences. This prototype was tested by 6 ex-patients who found value in the low threshold way to contact others, find trustworthy information and track their wellbeing. They valued peer experience exchange and better insight into themselves as this can ultimately lead to more reassurance in between consults. Based on this test further improvements, suggestions for the next steps and possibilities to scale the concept are presented. When developing an app for patient empowerment the Erasmus MC should; •Include peer patient experiences •Provide the patient with insight into their wellbeing over time •Integrate tools and databases in one complete overview For designing in the field of value based healthcare, this project stresses the importance of incorporating experiences of the community and using a multidisciplinary approach.