ListeningTime; participatory development of a web-based preparatory communication tool for elderly cancer patients and their healthcare providers

Abstract

ObjectiveThis paper outlines the participatory development process of a web-based preparatory communication tool for elderly cancer patients and their oncological healthcare providers (HCPs). This tool aims to support them to (better) prepare their encounters. An overarching aim of the project is to develop the tool in a participatory way to increase uptake and use.MethodsScrum, a participatory framework originated from software development, was applied to develop the tool. Using constant feedback loops, elderly (former) cancer patients, oncological HCPs and their representatives were, as end-users, involved.ResultsDuring six ‘sprints’, the communication tool ‘ListeningTime’ was developed with input from end-users. The use of scrum in developing an innovative tool was challenging in this context, because of time constraints of seriously-ill patients and busy HCPs and the co-creation involving non-profit scientific researchers and a for-profit development company.ConclusionsThe collaboration with end-users facilitated the development process of ListeningTime. Early involvement of end-users and flexibility in terms of planning and setup appear to be preconditions for creating a bottom-up inspired development procedure. Several challenges emerged from using scrum as participatory framework. Nevertheless, the ‘pressure cooking situation’, using scrum, resulted in a quick development process and a product ready for implementation.

Evaluation and Implementation of ListeningTime: A Web-Based Preparatory Communication Tool for Elderly Patients With Cancer and Their Health Care Providers

“…An overarching aim of the project was to develop ListeningTime in a participatory way to increase its uptake and use. The participatory development process of ListeningTime, including the content and techniques used, was extensively described in a previous publication [14]. In short, ListeningTime is a website, containing 2 video diaries of simulated patient-HCP encounters in which different communication strategies are demonstrated.…”

“…Relistening an audiorecording of one’s own clinical encounter is another intervention that has proven to support patients in various ways—by enhancing recall, improving decision making and the communication with family members, and reducing anxiety [11-13]. With the aim to overcome communication barriers by having elderly patients with cancer and their oncological HCPs (better) prepare the clinical encounter, we combined these 2 techniques and developed ListeningTime, a Web-based preparatory communication tool, based on needs assessment among elderly patients with cancer and their oncological HCPs [3,14]. A Web-based intervention was chosen, as the internet is a valuable source of information and support, also for elderly patients with cancer [15,16].…”

“…Moreover, they can access the website anywhere, at any time, with a personal log-in. The participatory development process of ListeningTime is described in a previous publication [14].…”

Participatory digital health research: A new paradigm for mHealth tool development

“…Furthermore, the integration of participatory research and UCD presents pragmatic challenges that require out-of-the-box thinking. mHealth projects may lack the financial resources to engage UCD experts to support the translation of abstract design principles into practice, and significant lead-in time may be required to build academic and peer researchers' decision-making capacity regarding technological aspects [ 10 ]. Similarly, the traditional 1–2 week ‘sprint’ cycle which characterises software development may exclude the effective engagement of peer researchers experiencing clinical symptoms or other barriers [ 10 , 11 ].…”

“…mHealth projects may lack the financial resources to engage UCD experts to support the translation of abstract design principles into practice, and significant lead-in time may be required to build academic and peer researchers' decision-making capacity regarding technological aspects [ 10 ]. Similarly, the traditional 1–2 week ‘sprint’ cycle which characterises software development may exclude the effective engagement of peer researchers experiencing clinical symptoms or other barriers [ 10 , 11 ]. Balancing the time required to authentically and actively involve end-users with the pace of iterative sprint cycles is a noted challenge facing the application of UCD approaches in mHealth tool development [ 5 ].…”