“Thanks for letting us all share your mammogram experience virtually” : developing an online hub for cancer screening

Galpin, AJ; Meredith, JM; Ure, CM; Robinson, L

Abstract

Background:
The decision around whether to attend breast screening can often involve making sense of confusing and contradictory information on risks and benefits. The Word of Mouth Mammogram e-Network (WoMMeN) project was established to create an online resource to support decision making around breast screening. This paper presents data from our user-centred approach to engaging stakeholders (both health professionals and service-users) in the design of this online resource. Our novel approach involved creating a user-design group within Facebook to allow access to ongoing discussion between researchers, radiographers and existing and potential service-users.
Objective:
The current study had two objectives. The first was to examine the utility of an online user-design group for generating insight for the creation of online health resources. We sought to explore the advantages and limitations of this approach. The second objective was to analyse what women want from an online resource for breast screening information.
Methods:
We recruited a user-design group in Facebook, and also posted a survey within the group asking questions around design considerations for an online breast screening hub. Although the membership of the Facebook group varied over time, there were 71 members in the Facebook group at the end point of analysis. We next conducted framework analysis on 70 threads from Facebook and thematic analysis on the 23 survey responses. We focused additional analysis on how the themes were discussed by the different stakeholders within the context of the design group.
Results:
Two major themes were found across both the Facebook discussion and the survey data: ‘The power of information’, and ‘The hub as a place for communication and support’. Information was discussed as empowering, but also recognised as threatening. Communication and the sharing of experiences were deemed important but there was also recognition of potential miscommunication within online discussion. Health professionals and service-users expressed the same broad concerns, but also showed subtle differences. Importantly, the themes were triangulated between the Facebook discussions and the survey data, supporting the validity of an online user-design group.
Conclusions:
Online user-design groups afford a useful method for understanding stakeholder needs. In contrast to focus groups, they afford access to users from diverse geographical locations, and traverse time constraints allowing more considered follow-ups to responses. The use of Facebook provides a familiar and naturalistic setting for discussion. Whilst also acknowledging limitations in the sample, this approach has allowed us to understand the views of stakeholders in the user-centred design of the WoMMeN hub for breast screening.

• Journal Article Type: Article
• Acceptance Date: Sep 13, 2017
• Online Publication Date: Oct 27, 2017
• Publication Date: Oct 27, 2017
• Deposit Date: Sep 15, 2017
• Publicly Available Date: Oct 31, 2017
• Journal: Journal of Medical Internet Research: Cancer
• Electronic ISSN: 2369-1999
• Publisher: JMIR Publications
• Volume: 3
• Issue: 2
• Pages: e17
• DOI: https://doi.org/10.2196/cancer.8150
• Publisher URL: http://dx.doi.org/10.2196/cancer.8150
• Related Public URLs: https://cancer.jmir.org/