Galpin Adam, Meredith Joanne, Ure Cathy, Robinson Leslie
Directorate of Psychology and Public Health, School of Health Sciences, University of Salford, Salford, United Kingdom.
Directorate of Radiography and Occupational Therapy, School of Health Sciences, University of Salford, Salford, United Kingdom.
JMIR Cancer. 2017 Oct 27;3(2):e17. doi: 10.2196/cancer.8150.
The decision around whether to attend breast cancer screening can often involve making sense of confusing and contradictory information on its risks and benefits. The Word of Mouth Mammogram e-Network (WoMMeN) project was established to create a Web-based resource to support decision making regarding breast cancer screening. This paper presents data from our user-centered approach in engaging stakeholders (both health professionals and service users) in the design of this Web-based resource. Our novel approach involved creating a user design group within Facebook to allow them access to ongoing discussion between researchers, radiographers, and existing and potential service users.
This study had two objectives. The first was to examine the utility of an online user design group for generating insight for the creation of Web-based health resources. We sought to explore the advantages and limitations of this approach. The second objective was to analyze what women want from a Web-based resource for breast cancer screening.
We recruited a user design group on Facebook and conducted a survey within the group, asking questions about design considerations for a Web-based breast cancer 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 a framework analysis on 70 threads from Facebook and a thematic analysis on the 23 survey responses. We focused additionally on how the themes were discussed by the different stakeholders within the context of the design group.
Two major themes were found across both the Facebook discussion and the survey data: (1) the power of information and (2) the hub as a place for communication and support. Information was considered as empowering but also recognized 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 there were subtle differences in their opinions. Importantly, the themes were triangulated between the Facebook discussions and the survey data, supporting the validity of an online user design group.
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 follow-ups to responses. The use of Facebook provides a familiar and naturalistic setting for discussion. Although we acknowledge the limitations in the sample, this approach has allowed us to understand the views of stakeholders in the user-centered design of the WoMMeN hub for breast cancer screening.
关于是否参加乳腺癌筛查的决定通常需要理解有关其风险和益处的令人困惑且相互矛盾的信息。口碑乳房X光检查电子网络（WoMMeN）项目旨在创建一个基于网络的资源，以支持有关乳腺癌筛查的决策。本文展示了我们以用户为中心的方法的数据，该方法让利益相关者（包括医疗专业人员和服务使用者）参与到这个基于网络的资源的设计中。我们的新颖方法包括在脸书上创建一个用户设计小组，以便他们能够参与研究人员、放射技师以及现有和潜在服务使用者之间正在进行的讨论。
本研究有两个目的。第一个目的是检验在线用户设计小组对于为创建基于网络的健康资源提供见解的效用。我们试图探究这种方法的优点和局限性。第二个目的是分析女性对于基于网络的乳腺癌筛查资源有哪些需求。
我们在脸书上招募了一个用户设计小组，并在小组内进行了一项调查，询问有关基于网络的乳腺癌筛查中心设计考虑因素的问题。尽管脸书小组的成员随时间有所变化，但在分析终点时脸书小组有71名成员。接下来，我们对脸书上的70个主题帖进行了框架分析，并对23份调查问卷回复进行了主题分析。我们还特别关注了在设计小组背景下不同利益相关者如何讨论这些主题。
在脸书讨论和调查数据中发现了两个主要主题：（1）信息的力量；（2）作为交流和支持场所的中心。信息被认为既能赋予力量，但也被认为具有威胁性。交流和经验分享被视为重要，但也认识到在线讨论中可能存在沟通不畅的问题。医疗专业人员和服务使用者表达了相同的广泛担忧，但他们的观点存在细微差异。重要的是，这些主题在脸书讨论和调查数据之间相互印证，支持了在线用户设计小组的有效性。
在线用户设计小组提供了一种了解利益相关者需求的有用方法。与焦点小组不同，它们能够接触到来自不同地理位置的用户，不受时间限制，允许对回复进行更多跟进。使用脸书为讨论提供了一个熟悉且自然的环境。尽管我们承认样本存在局限性，但这种方法使我们能够在以用户为中心设计WoMMeN乳腺癌筛查中心的过程中了解利益相关者的观点。
