The following blog is based on a paper presented at ESOMAR Congress in September 2024 alongside Louise McKenna-Mayes and Toni Ward, of TONIBOBANDLOU.  ESOMAR members may access the full paper and research findings here. 

Introducing BOB (“The Book of Boobs”): A New Era in Breast Reconstruction Awareness 

We are thrilled to announce a collaboration between HumanListening and BOB (“The Book of Boobs”), a groundbreaking initiative offering women a new way to access images to support their decisions on breast reconstruction surgery. This partnership, brought to life by our team at HumanListening and the creators of BOB, aligns with our company objective to support social enterprises dedicated to empowering women and girls. Additionally, it highlights how Qualitative AI, as a survey methodology, can bridge qualitative insights from personal stories with quantitative analysis, enhancing decision-making processes. 

We are proud to tell this story because it shows how research can make a positive impact in our society. Presenting the outcomes at the ESOMAR 2024 Congress in Athens allowed us to share our learnings and highlight the necessity of #AIForGood within the insights industry and beyond.  

What is BOB and how did it start? 

Figure 1: Key breast cancer statistics 

As of 2020, 7.8 million women were diagnosed with breast cancer in the prior 5 years, making it the world’s most prevalent cancer (WHO). In the UK, 1 in 7 women will be diagnosed with breast cancer during their life (NSC), with 30% requiring a mastectomy. Yet, numerous studies, including one by The Breast, a peer-reviewed journal, highlight the lack of visual resources to support decision making.  

This gap often leads women to seek unfiltered and distressing images online. BOB was born out of the personal experience of Lou McKenna-Mayes’ lack of access to visual decision aids to help her make an informed decision about the type of breast reconstruction surgery she was going to have.   

Recognising the need for change for a systemic issue, Lou enlisted the help of her friend Toni Ward, a professional Photographer, to drive positive change. Their collaboration led to the inception of Project BOB, designed to aid decision making about breast reconstruction using fine art photography of reconstructed breasts post breast cancer. Its purpose is to empower and educate women, changing the narrative around the patient experience. The book has been produced in collaboration with nurses, surgeons, and patients. The approach and photography is unique and has not existed or been available to women previously. 

To maximise the impact of BOB, the team needed deep insights into the lived experiences of women who had undergone or were planning to undergo a mastectomy. The mix of qualitative and quantitative methods aimed to validate the hypothesis that photographic resources were inadequate and to uncover the emotions, fears, needs, and experiences of women in a way that traditional focus groups and surveys could not. 

Our support for BOB shows the power of Qualitative AI 

The research for BOB was conducted through aligned not for profit and support organisations who distributed a survey link to obtain feedback from women in the UK.  Through these channels, we were able to engage with 126 women across the UK who had undergone breast reconstruction or needed to do so following diagnosis. The project used traditional survey questions coupled with EVE, HumanListening’s AI moderator, integrating both qualitative and quantitative feedback in a single data set. 

Image 2: Overview of research conducted 

Qualitatively, we explored experiences with diagnosis and the role of imagery in decision making, helping us to understand drivers of confidence in decision making. We also provided women with the opportunity to share their thoughts on how imagery could be improved.  

Image 3: Example of EVE conversation 

This methodology allowed for the collection of authentic, real-time responses about sensitive topics. The collected data was subjected to rigorous analysis, including sentiment analysis, generative summaries, and comparative subgroup analysis, to derive robust, actionable insights. These insights helped the Project BOB team to gain a better understanding of what women valued and needed to help them make an informed decision.

Image 4: Text analytics outputs

Image 5: Text Auto Report on subtopic “emotional distress” 

Ultimately, the research strongly validated that Lou’s experience was the same as many women and that indeed, change is needed. Not only has EVE provided valuable emotional insights from the 126 individual stories, but it has also enabled us to distil clear outcomes and validate BOB as a concept:

• Resources provided to women fail to help decision making and provide confidence: 79% did not have the right information to make decisions about reconstructive surgery. 

• Many women do not feel fully informed throughout the breast reconstructive process. 

• Crucially, women do not see themselves represented and visuals are of low quality - yet 87% use imagery to support their decision. 

• Finding representation/identity was the most prevalent unprompted conversation.

Impact

This project exemplifies how new technologies, like Qualitative AI, can enhance research – particularly on sensitive topics. By providing a non-judgmental and empathetic platform for women to share their experiences, the Book of Boobs empowers and educates women facing breast reconstruction, ultimately improving their decision-making process and overall experience. 

Join the Movement 

BOB's mission is ever evolving, and everyone's participation can make a significant difference. By sharing your story, accessing vital resources, or simply learning more, you can help amplify the voices of women worldwide. Visit the TONIBOBANDLOU website to become part of this transformative journey. 

References 

• World Health Organisation (2021) ‘Breast Cancer’ available at: https://www.who.int/news-room/fact-sheets/detail/breast-cancer (accessed 18 July 2022).
• UK NSC (2019) Adult screening programme: Breast Cancer. UK National Screening Committee. http://www.gov.uk [Free Full-text]
• Breast Cancer Now  ‘Delivering Real Choice: The Future of Breast Reconstruction in England’
• The Breast, key Factors in the decision-making process for mastectomy alone or breast reconstruction: A qualitative analysis.  T.Blackmore, K, Norman, V. Burrett, J.Scarlet, I.Campbell, R.Lawrenson