Accepted for/Published in: JMIR Formative Research
Date Submitted: May 16, 2022
Date Accepted: Sep 29, 2022
Why patient involvement in creating content for ehealth interventions is so important: A qualitative case report in orthopedics
ABSTRACT
Background:
In many industries, it is standard practice to collaborate with end-users when developing or improving a product or service. The aim of this process is to get a much better understanding of who the end-user is, and how the product or service could be of added value to him or her. Although patient (end-user) involvement within the development of ehealth applications is increasing, so far this involvement mainly focused on the design, functionalities, usability of and readability of its content. While the latter is of great importance, it does not ensure that the content provided actually aligns with what matters to patients.
Objective:
With this study, we aim to explore the added value of patient involvement in the development of the content for an ehealth application. As a use case, we use an existing, widely used app for patients undergoing knee replacement surgery. Through this app, for which the content was developed solely by healthcare providers, patients already receive 30 pieces of information and 16 unique videos in a timely manner in the first month after surgery. By comparing the findings from this study with the existing app, we might identify the additional informational needs that patients have. In addition, our findings might be used to improve the content of apps that are already available for knee replacement patients, including the app our group studied in 2019.
Methods:
Patients from a large Dutch orthopedic clinic participated in semi-structured, one-on-one interviews and a focus group session. All patients had undergone knee replacement surgery in the months prior to the interviews, all had used the app, and were therefor capable of discussing what information they missed or would have wished for before and after the surgery. Thematic analysis was used to inductively organize the output into larger themes and an overview of suggestions for improvement.
Results:
During the interviews and focus group session with eleven patients, six major themes and 30 suggestions for improvement were identified, ranging from information to better manage expectations, to different kinds of practical needs during the various stages of the treatment. The outcomes were discussed with the medical staff for learning purposes and to properly translate them into an improved version of the app’s content.
Conclusions:
In this study, many suggestions for improvement were identified by patients, demonstrating the added value of involving patients when creating the content of ehealth interventions. In addition, our study demonstrates that a relatively small group of patients can contribute to the improvement of an app’s content from a patients’ perspective. Given the growing emphasis on patients’ self-management, it is crucial that the information they receive is not only relevant from a healthcare provider’s perspective, but also aligns with what really matters to patients. Clinical Trial: Netherlands Trial Register (reference number 8595)
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