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. 2021 Feb 16;23(2):e19532.
doi: 10.2196/19532.

Technology-Enabled Reform in a Nontraditional Mental Health Service for Eating Disorders: Participatory Design Study

Alyssa Clare Milton  1 , Ashlea Hambleton  2 , Mitchell Dowling  1 , Anna Elizabeth Roberts  1 , Tracey Davenport #  1 , Ian Hickie  1
Affiliations

Technology-Enabled Reform in a Nontraditional Mental Health Service for Eating Disorders: Participatory Design Study

Alyssa Clare Milton et al. J Med Internet Res. .

Abstract

Background: The recent Australian National Agenda for Eating Disorders highlights the role technology can play in improving accessibility and service development through web-based prevention, early access pathways, self-help, and recovery assistance. However, engagement with the eating disorders community to co-design, build, and evaluate these much-needed technology solutions through participatory design processes has been lacking and, until recently, underresourced.

Objective: This study aims to customize and configure a technology solution for a nontraditional (web-based, phone, email) mental health service that provides support for eating disorders and body image issues through the use of participatory design processes.

Methods: Participants were recruited chiefly through the Butterfly National Helpline 1800 ED HOPE (Butterfly's National Helpline), an Australian-wide helpline supporting anyone concerned by an eating disorder or body image issue. Participants included individuals with lived experience of eating disorders and body image issues, their supportive others (such as family, health professionals, support workers), and staff of the Butterfly Foundation. Participants took part in participatory design workshops, running up to four hours, which were held nationally in urban and regional locations. The workshop agenda followed an established process of discovery, evaluation, and prototyping. Workshop activities included open and prompted discussion, reviewing working prototypes, creating descriptive artifacts, and developing user journeys. Workshop artifacts were used in a knowledge translation process, which identified key learnings to inform user journeys, user personas, and the customization and configuration of the InnoWell Platform for Butterfly's National Helpline. Further, key themes were identified using thematic techniques and coded in NVivo 12 software.

Results: Six participatory design workshops were held, of which 45 participants took part. Participants highlighted that there is a critical need to address some of the barriers to care, particularly in regional and rural areas. The workshops highlighted seven overarching qualitative themes: identified barriers to care within the current system; need for people to be able to access the right care anywhere, anytime; recommendations for the technological solution (ie, InnoWell Platform features and functionality); need for communication, coordination, and integration of a technological solution embedded in Butterfly's National Helpline; need to consider engagement and tone within the technological solution; identified challenges and areas to consider when implementing a technological solution in the Helpline; and potential outcomes of the technological solution embedded in the Helpline relating to system and service reform. Ultimately, this technology solution should ensure that the right care is provided to individuals the first time.

Conclusions: Our findings highlight the value of actively engaging stakeholders in participatory design processes for the customization and configuration of new technologies. End users can highlight the critical areas of need, which can be used as a catalyst for reform through the implementation of these technologies in nontraditional services.

Keywords: body image; co-design; consumer engagement; eating disorders; mental health; participatory design; service reform; technology.

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Conflict of interest statement

Conflicts of Interest: IH was an inaugural commissioner on Australia’s National Mental Health Commission (2012-2018). He is the Co-Director, Health and Policy at the Brain and Mind Centre (BMC) University of Sydney. The BMC operates early intervention youth services at Camperdown under contract to headspace. IH has previously supported community-based and pharmaceutical industry-supported (Wyeth, Eli Lily, Servier, Pfizer, AstraZeneca) projects focused on the identification and better management of anxiety and depression. He was a member of the Medical Advisory Panel for Medibank Private until October 2017, a Board Member of Psychosis Australia Trust and a member of the Veterans Mental Health Clinical Reference group. He is the Chief Scientific Advisor to, and an equity shareholder in Innowell. Innowell has been formed by the University of Sydney and PwC to deliver the Aus $30 (US $22.81) M Australian Government-funded ‘Project Synergy’. Project Synergy is a three-year program for the transformation of mental health services through the use of innovative technologies. The remaining authors do not have any conflicts of interest to declare.

Figures

Figure 1
Figure 1
Workshop location, sample size, and focus. PD: participatory design.
Figure 2
Figure 2
Overarching participatory design themes.
Figure 3
Figure 3
Artifact showing an individual’s data connected all in one place (Workshop 2, Sunshine Coast, Prototype, Lived Experience).
Figure 4
Figure 4
Artifact showing data sharing with a supportive other (Workshop 2, Sunshine Coast, Prototype, Lived Experience).
Figure 5
Figure 5
User journey of an individual with lived experience of an eating disorder.
Figure 6
Figure 6
Illustrative example of how user feedback during participatory design workshops have informed changes to the InnoWell Platform.
See this image and copyright information in PMC

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