Female genital mutilation (FGM) is a sensitive subject to discuss (Royal College of Nursing [RCN], 2019). For many health professionals working in community and primary care, instantaneous access to information is crucial to initiate and develop such conversations, keeping in mind the safeguarding, legal and therapeutic aspects of care for those affected by FGM (RCN, 2019). To lead such discussions, health professionals require knowledge and confidence around the issue of FGM. In community settings, access to high quality, contemporary sources to support such discussions is key. This project therefore addressed this need by harnessing digital technologies.
A Mary Seacole Award (MSA) in Leadership was granted to author one to produce the ‘Let's talk FGM’ app, to assist health professionals to make sensitive inquiry about FGM, identify girls at risk, and direct survivors towards care and support. MSAs are awarded following a competitive application process to nurses, midwives and health visitors working in England seeking to undertake a project that will positively impact the lives of people from groups. The MSAs incorporate academic (provided by author two) and professional mentorship, and funding for project planning, implementation and conclusion-all within one calendar year. The awards take inspiration from the pioneering 19th century Jamaican/British nurse, Mary Seacole (Anionwu, 2006) and aim to build on her legacy.
The MSAs are funded by Health Education England, and supported by NHS employers and the four nursing and midwifery unions: Unite the Union CPHVA, Royal College of Midwifery and Unison, RCN (2020). Successful completion of an MSA project requires professional leadership, collaborative working and academic rigor (McEwan and Bedford, 2017). MSA scholars undertaking a leadership award are required to submit an academic (masters level) final project report to the MSA Steering Group on completion (McEwan, 2016), and to fulfil a commitment to dissemination as conditions of the award.
This article outlines and reflects on the process of collaboration in app development: the initial, substantive development of the ‘Let's talk FGM’ app during the MSA project year in 2016, and its subsequent development to become a web-based app letstalkfgm.nhs.uk in 2018. The app was initially aimed at health professionals, primarily health visitors. It was designed to address a clinical need for health visitors (who used iPads provided by their employing NHS trust) to access appropriate literature, policies and guidelines on FGM in people's homes.
App development was enabled by collaboration between an NHS trust and a voluntary sector organisation run by, and serving, FGM-affected communities. ‘Let's talk FGM’ was the result of rich feedback from focus groups undertaken with health and social care professionals, community workers, NHS service users, young people, and women from FGM-affected communities.
Following positive feedback, an enhanced version of the app and a web-based app (letstalkfgm.nhs.uk) were developed, which have enabled greater access for health professionals and the public alike. The app has significant utility and value as a source of contemporary information and a conversational tool. It incorporates films and key information in six languages on: the impact of FGM, why it occurs, the law, rights, religion, how to protect children and local support for FGM survivors.
Literature review
Female genital mutilation
Globally, FGM is estimated to affect 200 million women and girls from around 30 countries (UNICEF, 2016). FGM is recognised by the UN as a form of violence against women and girls, a violation of human rights, and a child protection issue. The World Health Organization ([WHO], 2008) defines FGM as all procedures that involve the partial or total removal of the external parts of the female genitalia or other injury to the female organs for non-medical reasons. From census data of country of birth in 2011, it is estimated that FGM has affected 137 000 women and girls in England and Wales (MacFarlane and Dorkenoo, 2015). Estimated prevalence rates are as high as 4.7% in the London borough of Southwark; 1.2%–1.6% in Birmingham, Bristol, Slough and Manchester; and 0.7% in Oxford (MacFarlane and Dorkenoo, 2015).
Discussing FGM is often met with communication barriers. In a synthesis of 57 papers (Evans et al, 2018), barriers were thematically divided into: language barriers and interpretation challenges; can't talk, not asked: double silence and cultural taboo; and cultural (in)sensitivity. There is evidence that health professionals' knowledge, confidence and experience have been lacking (Zaidi et al, 2007; Relph et al 2012; Gabrasadig et al, 2015), and that discussions are complex and potentially stressful (Dixon et al, 2020). All studies, including Simpson et al (2012), recommended specialised training on knowledge around FGM and how to communicate sensitively.
Digital health technology
As the NHS promotes technology and innovation to improve the quality of patient care and outcomes, health professionals increasingly use digital technology to access information and support clients/patients across a range of care settings. The NHS People Plan 2020/21 (NHS England, 2020) addresses this by promoting new ways of working, and weaving technology into care. The strategic framework of Health Education England (2017) also identifies technology as one of the drivers for global change. The National Information Board (2014) stated that service users should have more control over their health and healthcare choices. Furthermore, the Digital Nurse Network promotes nurses to engage in digital transformation, keep them connected and share learning in digital projects (NHS England, 2020; NHS Improvement, 2020). Policy and professional research continue to support this stance by recognising and promoting the excellent digital tools that already exist (Department of Health and Social Care, 2018) and providing professionals with support and funding to develop digital technology based care, including user engagement at the heart of the design (The Queens Nursing Institute, 2018).
Using mobile technology can address patients/clients' needs more instantaneously, saving on resources to improve quality and innovate in the NHS. In his valuable round up, Mistry (2020) reflects that prior to the outbreak of coronavirus, adoption of digital technology at scale across the health and social care sector remained limited; however, the pandemic has necessitated the swift implementation of technology based tools.
App development in healthcare
Apps are defined as ‘software programmes that have been developed to run on a computer or mobile device to accomplish a specific purpose' (Wallace et al, 2012). Health apps have the potential to improve patient care through communication and quick access to key information (Buijink, 2013). Apps can be defined as a medical device when they support diagnosis (Buijink, 2013). When non-diagnostic but intended to promote behavioural change or offer therapeutic outcomes, apps can also be considered to be medical devices; however, they rarely require approval from Medicines and Healthcare products Regulatory Agency (2016). Under the Medical Devices Directive regulations, such apps do not require the ISO standard and individual NHS trusts can self-certify for a CE mark.
The number of mobile health (mhealth) app downloads has grown from 1.7 billion in 2013 to 3.7 billion in 2017 (Statistica, 2019), with 325 000 mhealth apps available on iOS and Google Play (Research 2 Guidance, 2017). However, there is a debate on the efficacy of some apps, ranging from harmlessness to inducing undue anxiety, and/or being reductionist (Hussain and Spence, 2015). Other problems have been identified with the use of apps, for example: privacy issues (Huckvale et al 2015), poor evidence-base, lack of regulatory control, and pharmaceutical companies influencing care through promoting their products (Buiijink, 2013). Other authors comment that there is little evidence that health professionals have been consulted in the design, content, and scrutiny of the evidence base (Armstrong, 2015; Lee et al, 2015; Macmillan et al, 2015).
Following such concerns, guidance on app development has emerged to promote quality assurance. The National Institute for Health and Care Excellence (NICE) has produced guidance on behavioural change and digital health technologies (DHT) aimed at technology developers and commissioners. The NICE (2019) Evidence Standards Framework demonstrates a tier system of DHT functionality that should: demonstrate system benefits, inform the public, promote healthy behaviours, and monitor or analyse usage.
The MSA ‘Let's talk FGM’ project
The ‘Let's talk FGM’ app was an MSA project. App development followed the phases and outputs of NHS Innovations South East (2014) as a project guide, namely: planning, developing app content, design and app development, beta testing and evaluating user experience. An application was made to Oxford Health NHS Foundation Trust (OHFT) research and ethics committee, which concluded that the project did not require ethical approval as it was considered a quality improvement project.
Planning and developing app content
To oversee the project to develop the app, a working group was established. The working group was led by the project lead (author one), and consisted of key staff from OHFT (a community focused trust) (the patient experience lead, head of public health, IT manager, communications, and media manager) and staff from the digital agency White October (app designers). The substantive content of the app was informed by data collection with key stakeholders, namely women from FGM-affected communities, sixth formers from black, Asian and minority ethnic (BAME) groups, and health professionals. Four focus groups and one interview (hereafter described as ‘the focus groups’) were conducted as follows:
- Focus group 1: women employees and volunteers from a local charity Oxford Against Cutting (OAC). Some of the women were from FGM-affected communities. The group met in a community centre
- Focus group 2: health professionals working within OHFT and Oxford University Hospitals NHS Foundation Trust (acute Trust,) and two social workers from Oxfordshire County Council. The group met in a local health centre
- Focus group 3: sixth form girls from BAME backgrounds at Oxford Academy. The group met in school at the end of the day. As they were over 16 years old, they did not require parental consent
- Interview: with an FGM survivor who was an OHFT service user. The interview was conducted in her home.
Written consent was sought and obtained from all participants prior to undertaking the focus groups, and confidentiality and anonymity was guaranteed. With consent, notes and recordings were taken during the discussions. All data was stored and handled in accordance with OHFT information governance policy.
A schedule of questions was devised (see Table 1) and time was allowed for open discussion during the focus groups which typically lasted two hours.
Table 1. Focus group questions
| Focus groups details: Stakeholders (and numbers of participants) | Questions posed |
|---|---|
| Focus Group: Health Professionals (11) Health VisitorsSchool health nurseSocial workersMidwifeObstetricianGPStudent of adult nursingNamed nurseDigital agency designer | How do we identify FGM?How do we discuss FGM? What do we need to act?What are the barriers to discussing FGM?How will an app address these barriers?What content should the app contain? |
| Focus Group: Community workers (7) FGM survivorsWomen from FGM affected communitiesCommunity workers experienced in FGM work | |
| Focus Group: Young people (5) Sixth form girls from black, Asian and minority ethnic backgrounds | What do you know about FGM?How do you think FGM should be discussed with young people?What should the FGM app contain? |
| Interview: Service user (1) | What do you want in the app?How do you want the app to talk to you? |
Information from the focus groups was summarised into short sentences and themed. The content and features of the app were thus determined by the focus groups' feedback, and this informed discussions with the digital agency, White October. Initial overarching features of the app were articulated as technology, images, translation, key information, culture and religion, and communication. Detail of the content included easy-to-read information; up-beat photographs with videos, maps, and infographics; the law, what FGM is, clinical care, contact information, safeguarding, services and support; stigma, why it happens, against religion; easing the conversation, respect and empathy.
Below are example quotations from focus group participants which illustrate development of the app content and features:
‘We know as Muslims that it [FGM] is wrong and it shouldn't happen-that needs to be said.’ (Young person)
‘It is not telling them what to do but them not allowing it to happen. Inclusive!’ (Health professional)
‘I want to see it on [the app] and feel this didn't just happen to me.’ (FGM survivor)
‘For a professional not particularly confident, it gives them the opportunity to say “let's begin with that”, giving them a starting point.’ (Health professional)
‘It should be something to draw the focus away from the woman or girl as it is an intense subject. Some cultures don't always like to have direct eye contact.’ (FGM survivor)
In summary, the focus group participants requested that the app contain information on the law, government legislation, cultural practices, definitions of FGM, and survivors' clinical and emotional support needs. They wanted the information to be delivered in a culturally sensitive manner which incorporated positive images and was attractive to the eye. They wanted text translated into target languages and delivered through audio and visual means, for example, videos and soundbites.
Design and app development
To understand how the app would be used, a ‘process-mapping session' (which included storyboards) was held between the project lead (author one) and the digital agency White October. Although intended for use by a range of professionals, the MSA project proposal had anticipated that primary users of the app would be health visitors and therefore the process mapping explored a health visitor's day. The following questions assisted the process mapping to shed light on the details to ensure maximum usability:
- How does the health visitor meet a client?
- Will they know the client has had FGM before the visit?
- How and why will they raise the subject of FGM?
- What are the processes for meeting the client next time?
Images for the app were sourced from Adobe Images and Flickr. To seek further views on the appropriateness of the images, the project lead consulted with women from FGM-affected communities while attending an FGM workshop held at Green Templeton College, University of Oxford (2016). The women's comments indicated that the images were usable and positive.
Contributors to the focus groups had indicated that Swahili, Mandinka, Tigrinya, Somali and Arabic (Egyptian and Sudanese dialects) would be the target languages for Kenya, Gambia, Eritrea, Somalia, Egypt and Sudan respectively. Text with five engaging facts about FGM in those countries was written from evidenced-based sources. Six women from the focus groups and the wider FGM-affected community agreed to translate the texts into their languages, and their voices were recorded for the country information soundbites. Participants gave written consent for their participation, which was anonymous, and were paid for their time from the MSA funding.
Focus-group feedback had also indicated that short films on the app would aid sensitive and informative discussions, particularly to raise issues that participants found difficult to explain in written form or verbal explanations. Hence, four films were made, featuring:
- A Muslim scholar on the Islamic view
- An obstetrician and director of the Oxford Rose Clinic (for women who have experienced FGM) talking through a consultation at the FGM clinic
- Three young people originating from FGM practising countries reflecting on how FGM had ended in their families
- An FGM survivor story of two Gambian women speaking of their role in protecting young girls.
All text, videos, images and audio recordings were collected and incorporated into the app design by the digital agency White October. The app was then launched for the beta testing phase to determine user experience. Based on participants' suggestions during the focus groups, and in discussion with White October, a consensus agreement resulted in the app being called ‘Let's talk FGM’.
Beta testing and evaluating user experience
The ‘Let's talk FGM’ app was initially launched from a platform called Testflight (Wikipedia, 2016) where it was beta-tested for 60 days. The working group suggested a mailing list of users from OHFT staff, focus groups participants, the MSA steering group, and anti-FGM activists from the author's professional networks. Health visitors in OHFT were requested to try out the app via emails from their operational managers.
A total of 410 people were sent an email link with a notification request to download the app and complete a digital survey on whether they used the app, how often they used it, if they found it useful, for what purpose they used it, and if they would recommend it. At the end of the 60-day beta testing, of the 410 who received request notifications, 81 installed the app and completed the digital survey. The 81 users had undertaken a total of 326 successful trial sessions using the app, and only one trial session had crashed.
OAC also ran four workshops to pilot the app, with each workshop varying between four and 15 participants. OAC held the workshops according to nationality to overcome language barriers; these were delivered by native speakers of languages of Nigeria, Sudan, Gambia and Kenya. Three workshops were held in community centres and one in a participant's home. Paper questionnaires and/or the digital survey were used to capture user feedback, according to what was most appropriate in each workshop setting.
At the close of the beta testing period, 53 out of 81 users who installed the app completed the digital survey. Usage was predominantly 1–3 times at 86%. Over 70% used it to inform their own knowledge, 19% used it as a training tool and 10% to inform a conversation with a client.
All users without exception found the app useful and would recommend it to others. In the question ‘what could be improved?’, only 19 answered, with 31% suggesting better options for navigation, 26% for text to be improved, and 21% and 10.5% for video and sound-bite improvements (although there were no comments on what exactly should be improved in audio and video). Only 43 users who completed the digital survey stated their role. The largest group were health visitors (44%), followed by school health nurses (11.6%) and 25% other.
Free text feedback from the OAC workshops is in Table 2.
Table 2. User experience from Oxford Against Cutting (OAC) workshops
| Focus groups details: stakeholders (and numbers of participants) | Questions posed |
|---|---|
| Focus Group: health professionals (11) Health visitorsSchool health nurseSocial workersMidwifeObstetricianGPStudent of adult nursingNamed nurseDigital agency designer | How do we identify FGM?How do we discuss FGM?What do we need to act?What are the barriers to discussing FGM?How will an app address these barriers?What content should the app contain? |
| Focus group: community workers (7) FGM survivorsWomen from FGM-affected communities Community workers experienced in FGM work | |
| Focus group: young people (5) Sixth form girls from black, Asian and minority ethnic backgrounds | What do you know about FGM?How do you think FGM should be discussed with young people?What should the FGM app contain? |
| Interview: service user (1) | What do you want in the app?How do you want the app to talk to you? |
Summary
This MSA project fulfilled its intention to produce an app to enable and inform health professionals to engage with clients to discuss FGM in a sensitive manner, addressing needs and directing appropriate care and/or safeguarding. Following the positive feedback from beta testing, the app was made available to any iPad user on iTunes in December 2016.
Dissemination of the ‘Let's talk FGM’ app occurred via the MSA network and articles in a range of media: Nursing Times: Role Model (2016a), the RCNi, British Journal of Healthcare Computing, Oxford Mail, Oxford Times, news feed Jack FM and BBC Radio Oxford. Accolades for the app included a London Design Award 2016 and author one received an OHFT award for Recognising Excellence and Innovation.
The project set out to create the ‘Let's talk FGM’ app for iPad for health professionals, primarily health visitors but achieved greater impact from the positive feedback from women from FGM-affected communities. One woman said she wanted to show it to her family in Kenya as it explained the issues so clearly. But, as her family and friends used Android phones, she would not be able to do so. Feedback from FGM-affected communities overwhelmingly indicated that they wanted to use the app. This led to further development of ‘Let's talk FGM’ app, with the aim of improving its performance and accessibility for wider public use.
Development of the web-based app letstalkfgm.nhs.uk
The framework of the project plan was revisited and the working group re-established. The group agreed that the iPad app would be improved, and a web-based app created, to enable accessibility from any browser. In November 2016, author one secured charitable funds of £20 000 from Oxford Health Charity to further develop ‘Lets talk FGM’. Permission was obtained from NHS England to use the website domain name ‘.nhs.uk’, to give credibility to the website, and the name agreed as ‘letstalkfgm.nhs.uk’. The web app was created through Squarespace (2018), a website creation platform that supports analytics and is easily updated.
Further enhancements to the letstalkfgm.nhs.uk web app included creation of a video to include men's voices. This was a film organised and planned by OAC who invited men from FGM-affected communities (Gambia, Nigeria, Sudan and Kurdistan) to discuss how they saw their role in ending FGM. The aim was to have a broad discussion on FGM in their communities and make a short film to promote on the OAC website. The film was originally nine minutes long. Author one's role was to work with OAC to reduce the film length to three minutes, so that the key messages were clear, and it was a suitable length to be embedded to the app. All five films on letstalkfgm.nhs.uk were uploaded to YouTube so that the videos open on the YouTube site. This was done to take up less space on Squarespace, and create opportunity for those searching FGM films on YouTube to be directed to the letstalkfgm.nhs.uk web app.
Another key enhancement was the translation of key information about FGM already on the app into Arabic and French, thus targeting a significant global population of women and girls affected by FGM in Africa and Asia. French and Arabic translations were embedded into the web app as audio recordings. The web-app content references and external links were also strengthened, to comply with UK Government legislation and national policy, and include information regarding access to care for women seeking asylum.
The letstalkfgm.nhs.uk web app was launched in December 2017 in collaboration with the digital agency White October and OHFT. Media announcements were made through Twitter, OHFT Facebook page, OAC website, Unite Live (2018) article and press releases to local and national media. An email was also sent to all those who were on the beta testing launch list, prompting them to re-install the upgraded iPad app in April 2018 and/or use letstalkfgm.nhs.uk on their browser.
Evaluating use of letstalkfgm.nhs.uk app
User feedback of letstalkfgm.nhs.uk on Squarespace analytics showed that between March 2018 and November 2020 there were over 3 900 visits to the website. Website traffic in 2020 alone showed 1 600 visits with 1 500 unique users. There was a peak in February and March 2018 with over 800 visits, and in May 2020 with 354 visits (Figure 1). Website analytics showed that in 2020, 1 149 users went directly to the web app while 323 found it through the Google search engine. The desktop was the most used device at 1 408 visits, compared to 323 visits from a mobile. The geography of the web app traffic was predominantly from English-speaking countries, notably the UK (1 507), the US (910), Canada (264) and Australia (82). India had 142 users and Egypt and Sudan had 9 and 2, respectively. The most visited pages were the home page, ‘What is FGM?’ and ‘Global prevalence’ (Figure 2).
Figure 1. Website traffic for letstalkfgm.nhs.uk (January 2018 to November 2020) 
Figure 2. Most visited pages to letstalkfgm.nhs.uk (January 2018 to November 2020)
It is likely that first peak in traffic was related to the launch of the web app coinciding with International Day of Zero Tolerance of FGM. Following a Google search, indications for the peak in traffic in May 2020 could possibly be explained by several webinars on FGM occurring at that time. The predominance of desktop use in 2020 may be explained by COVID-19 pandemic leading to more home working. Furthermore, the web app and the updated iPad app are included as resources in OHFT safeguarding training, Oxfordshire Safeguarding Children's Board and Hertfordshire County Council learning resources for professionals.
Discussion
The benefit of digital tools to improve care has never become more relevant than during the COVID-19 pandemic, with doctors and nurses in COVID-19 wards and ICU using digital apps and devices to communicate with patients and their loved ones. Similarly, health visitors have had to be inventive when unable to conduct face-to-face visits to clients' homes. While health visitors will welcome a return to communicating with clients without exclusively using digital devices, many are aware that these tools are beneficial and here to stay.
This project is an example of how practitioners can reflect on the needs of service users and feel confident to employ project planning, collaborative engagement and management skills so often used in clinical practice. Furthermore, the empathy and therapeutic relationships that form part of the health visitor repertoire are also vital skills required in a service improvement project or innovation. To know if an idea will work, requires listening to service users, acknowledging their views and having the flexibility to adapt to their needs. Hence, a responsive approach should lead to an adaptive project, and ultimately as in this case an agile app. This is an example of how an innovation can be done and how by engaging with service users in a meaningful way can benefit both them and healthcare professionals.
Conclusion
What is evident from the published literature and the focus groups undertaken in this project is that discussing FGM in an informed and sensitive manner is imperative for health professionals to safeguard women and girls and provide the needed support to FGM survivors. Let's talk FGM.nhs.uk is a tool that informs and guides users around a complex subject, encouraging a collaborative discussion when shared. The app developed from listening to professionals, FGM survivors, and women and men from FGM-affected communities to inform the design and content of the app. It is an opportunity to explore using audio and visual references around this sensitive topic.
Key points
- Health professionals and service users are increasingly engaged in digital technologies to promote health
- Clinicians' roles in advancing digital health are key; leadership opportunities and expansion of digital skills are to be encouraged
- Insights and reflections from practice can fuel technological innovation to underpin high quality care—as evidenced in the ‘Let's talk FGM’ app and, later, the letstalkfgm.nhs.uk web app
- Female genital mutilation remains a key public health issue, requiring sensitive, effective and evidenced-based discussions to engage with service users, plan and provide contemporary care
CPD reflective questions
- What digital health tools do you currently incorporate into your care?
- How could you strengthen your knowledge, skills and engagement in local, regional and national digital midwifery and maternity agendas?
- How could the letstalkfgm.nhs.uk app enhance your communication with women about female genital mutilation?