Co-production of complex public health interventions is seen as an increasing necessity in intervention development for improving acceptability and sustainability of interventions (1). It involves key stakeholders working alongside researchers to co-develop an intervention that is feasible, acceptable and sustainable by taking account of contextual factors (e.g. need, culture, geography, preferences, resources). Co-production in intervention development typically involves in-person workshops or consultations, and face to face interviews or focus groups in which intervention materials are developed and tested with those who will receive, deliver, or resource the intervention, and feedback provided on various aspects.
In-person co-production is an efficient, convenient method of working together, which aids relationship building, but is not suitable for all demographics. In particular, creating a workshop or focus group at a time and location that suits everyone is challenging when working with populations that have an uncommon condition, are geographically dispersed, or have limited opportunities to gather. However, the internet has dramatically changed modern modes of communication and connected those who may otherwise never have an opportunity to interact.
Facebook is an on-line social networking site developed in 2004. Originally intended for university students, Facebook has now exploded in popularity around the world – with nearly 1.59 billion daily users (2). It allows users to get in touch with people with similar interests, backgrounds, and experiences instantaneously. The capabilities of Facebook now extend far past keeping in touch with friends and family. People use it as a main source of news, forming connections around similar hobbies, interests and illnesses, and for self-promotion (3, 4).
Groups are a feature of Facebook that allows like-minded individuals together to connect and share experiences. Facebook groups have varying levels of privacy: an open group is viewable to anyone on Facebook and not restricted to members of the group. A closed group has content only viewable by the group members, who are able to join through an approval process. Anyone can see the existence of a closed Facebook group. However, a secret group is not viewable by anyone except those in the group – who are able to join only by direct invitation (5). It is private and hidden in searches; those who are not members of a secret Facebook group cannot see the existence or the content of the secret Facebook group (6). This type of privacy holds particular benefit for research, as confidentiality and anonymity are ethically important. The British Psychological Society published ethical guidelines for internet-mediated research in 2017 encompassing 4 main principles: 1) respect autonomy, privacy and dignity; 2) maintain scientific integrity; 3) social responsibility and 4) increase the benefits whilst reducing the harms (7).
Previous studies have conducted focus-group style research in private or secret Facebook groups (8), with the purpose of conducting a needs analysis or collecting data in a more focus-group style to understand a problem. Research groups at the University of Indiana and the University of Edinburgh have particular experience with Asynchronous Remote Communities, or focus groups occurring online in which participants are not online at the same time, and have published widely on the topic – primarily short reports with recommendations for future research and lessons learned (9, 10). However, none of the studies we have found to date use asynchronous remote communities, particularly in a secret Facebook group, to co-design an intervention for future testing.
This paper describes a method of co-production and intervention development specifically designed to overcome barriers of in-person research methods: online, secret Facebook groups. In this paper, we will describe the development and use of the secret Facebook group in a dispersed group of participants with a relatively rare health condition and discuss the benefits and limitations for research. This secret Facebook group study was part of a larger intervention development research study, using the Six Steps in Quality Intervention Development (6SQuID) framework. The 6SQuID framework is based on six steps: 1. Identifying a public health problem and its causes; 2. Clarify the modifiable and non-modifiable causal factors; 3. Identifying the theory of change (what causal pathways to interrupt and how); 4. Identify the theory of action (how to deliver the intervention); 5. Test and refine on a small scale; and 6. Collect sufficient evidence of effectiveness to justify more rigorous evaluation and implementation.
The population group for our study was women with a history of gestational diabetes, a disease that affects 4.4% of pregnancies worldwide and significantly increases risk of Type 2 diabetes later in life (11, 12). Physical activity was the target behaviour of this intervention development study as it is a beneficial tool for Type 2 diabetes prevention for women with previous gestational diabetes as well. A US-based prospective cohort study of 4,554 women with a history of gestational diabetes found that for every 100 minutes increase of moderate-vigorous physical activity performed per week, there was a 9% reduced relative risk of T2DM onset [95% CI, 0.88–0.94], even after adjusting for diet and BMI (13).
A lay advisory group composed of three women with previous gestational diabetes was consulted about the ideal method of co-production; they favoured a secret Facebook group for several reasons including convenience, high existing use, and ease of use of the website and phone application. Previous research has shown that 81% of mothers use Facebook, and 56% of these mothers check the platform several times a day (14). Additionally, online focus groups and in-person focus groups have been shown to be comparable in terms of quality of content collected (15).