To understand the rose, one person may use geometry and another the butterfly
(Claudel, 1929)
The theme of this year’s World Obesity Day was ‘everybody needs to act’. On the day itself we saw clear and compelling accounts from advocacy groups, scientific contributions from leading medics and researchers, and policy recommendations from think-tanks and NGOs. The message was clear – to develop an effective understanding of, and response to, obesity as a chronic disease, everybody needs to act.
SOPHIA’s work-package seven team, led by Dr Deirdre McGillicuddy (UCD) and Joe Nadglowski (OAC) and including Dr Emma Farrell (UCD) and Eva Hollmann (UCD), are tasked with ensuring that the voices and experiences of those living with obesity are central to the conversation. We sought, in the vein of Claudel above, to understand obesity by listening to, and capturing, the experiences of those who live with the disease. Our aim is to position stories alongside the wonderful science being generated by our colleagues across the SOPHIA consortium – in recognition that a meaningful response to obesity requires both science and stories. To mark World Obesity Day we shared some snippets of the stories we heard – data generated as part of a participatory photovoice methodology. In this post we aim to describe this methodology (what we did); demonstrate the level of insight that can be garnered from listening to lived experiences (why and how we did it); share some of the feedback we received from the people who shared their stories with us (what it was like); and outline some of the ways these data, and the broader work of the work-package seven team, will be used to inform policy, practice and understanding (so what?).
One of six innovative qualitative methodologies employed by the team, photovoice, or participatory image-based research (Luttrell, 2010), offered a process of ‘collaborative seeing’ (Lico & Luttrell, 2011) through the use of photography. It enabled participants (n=11) a means of offering insight into aspects of experience often obscured or obfuscated by the limitations of language. The images offered an opportunity for a deeper level of understanding of what it is like to live with obesity. To take one image and quotation, from Angela*, as an example.
“The policies at the moment are segregating, it’s not your choice of isolation, it’s systemic isolation. […] There is a ‘them and us’ sort of scenario with the segregation. It’s not a nice place to be on either side of the fence in society. You’re being punished for not being vaccinated but in many ways you’re being punished for being overweight as well. Isolated from participation in society in subtle ways” – Angela
What Angela’s image (taken with the rather primitive disposable camera we provided to all participants) depicts is a badge, with a large ‘tick’ of approval, confirming she received her COVID-19 vaccine. For Angela, the isolation and segregation of people living with obesity during the COVID-19 pandemic was akin to the treatment of people who were unvaccinated. It opened up a conversation about aspects of society – physical and social – that were, and are, off-limits to people with obesity. It brought us into closer contact with the many, subtle as Angela points out, ways in which segregation and stigmatisation are levied upon those with obesity from all aspects of society. The image, while seemingly straightforward, opened up a deeper conversation about what it is like to live in a strata of society that is ostracised and “punished” by the reminder. To be one of “them”.
The quote above from Angela represented one small segment of a much larger conversation. A conversation that was replicated 13 more times, over 25 hours of conversation with 11 people who took more than 200 photographs that offered rich insight into their experience of living with obesity. Some described these conversations as “a soul searcher” (Liam) while others expressed gratitude for the rare space participation afforded them to share their experiences without the curtailment of professional-led questioning: “I’m very grateful too. Don’t ever underestimate the effect that this has had on me” (Peadar). Time and again we were reminded how rare the opportunity to speak, and truly be heard, is in a world that tends to focus more on the problem than the person.
“Maybe one person speaking honestly about their experience does more to change people’s minds than loads of graphs and empirical data”. – Steve
In a rich information environment of scientists, advocacy groups, medical practitioners and researchers, what can data such as these do for our understanding of obesity? Perhaps, as Steve says, one person speaking honestly will do more to change minds than a stack of empirical data. However, the challenge that the SOPHIA work package seven team are tasked with is ensuring that these stories are heard and appreciated in a developing policy and practice landscape. We aim to do this by (a) publishing our research in academic journals, as we have begun to do in the last few months (see below), and in public for a (such as this blog); (b) presenting our findings at conferences and key discussions; (c) engaging the expertise of our advisory board, composed of people living with obesity, and; (d) collaborating with colleagues in research, clinical practice, policy development and industry in recognition that, as World Obesity Day 2022 reminds us, everybody needs to act.
Dr Emma Farrell
*All participant names have been changed to protect their anonymity.
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This project has received funding from the Innovative Medicines Initiative 2 Joint Undertaking (JU) under grant agreement No 875534. The JU receives support from the European Union’s Horizon 2020 research and innovation programme and EFPIA and T1D Exchange, JDRF, and Obesity Action Coalition.
About IMI
The Innovative Medicines Initiative (IMI) is Europe’s largest public-private initiative aiming to improve health by speeding up the development of, and patient access to, innovative medicines, particularly in areas where there is an unmet medical or social need. IMI facilitates collaboration between the key players involved in healthcare research, including universities, the pharmaceutical and other industries, small and medium-sized enterprises (SMEs), patient organisations, and medicines regulators. It is a partnership between the European Union (represented by the European Commission) and the European pharmaceutical industry (represented by EFPIA, the European Federation of Pharmaceutical Industries and Associations). For further information: www.imi.europa.eu
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References
Claudel, P. (1929). L’oiseau noir dans le soleil levant [The blackbird in the rising sun]. Paris, Gallimard.
Farrell, E., Hollmann, E., le Roux, C.W., Nadglowski, J., & McGillicuddy, D. (under review). Obesity and the COVID-19 Pandemic: At risk and at home. eClinicalMedicine
Farrell, E., Hollmann, E., le Roux, C.W., Bustillo, M. Nadglowski, J., & McGillicuddy, D. (2021). The lived experience of patients with obesity: A systematic review and qualitative synthesis. Obesity Reviews. https://doi.org/10.1111/obr.13334
Farrell, E., Bustillo, M., le Roux, C.W., Nadglowski, J., Hollmann, E. & McGillicuddy, D. (2021). The lived experience of people with obesity: Study protocol for a systematic review and synthesis of qualitative studies. Systematic Reviews, 10(181). DOI: 10.1186/s13643-021-01706-5.
Farrell, E., Hollmann, E., le Roux, C.W., Bustillo, M., Nadglowski, J. & McGillicuddy, D. (2022). The experience of living with obesity during the COVIID-19 pandemic: An IMI2 SOPHIA study. European Association for the Study of Obesity. (online). 4-7 May 2022.
Hollmann, E., Farrell, E., le Roux, C.W., Nadglowski, J. & McGillicuddy, D. (2022). Stigma, blame and shame experienced by people living with obesity –A qualitative synthesis: An IMI2 SOPHIA Study. European Association for the Study of Obesity. (online). 4-7 May 2022.
Farrell, E. (2021). The impact of recognising obesity as a disease on people living with obesity. UK Association for the Study of Obesity (ASO) conference. 9th September 2021.
Farrell, E. (2021). What can we learn from patient’s voice?. ISRRT World Congress (online). 21st August 2021.
Farrell, E., Hollmann, E., le Roux, C.W., Bustillo, M., Nadglowski, J. & McGillicuddy, D. (2021). The lived experience of people with obesity: a systematic review and qualitative synthesis. European Association for the Study of Obesity. (online). 10-13 May 2021
Kuruvilla, S., Farrell, E., Mastroianni, E., Hollmann, E., le Roux, C.W., Nadglowski, J. & McGillicuddy, D. (2021). Understandings of obesity complications, diagnosis and treatment in online communities: A ‘netnographic’ analysis. European Association for the Study of Obesity. (online). 10-13 May 2021
Lico, S., and W. Luttrell. 2011. “An Important Part of me: A Dialogue About Difference.” Harvard Educational Review 81 (4): 667–686.
Luttrell, W. 2010. “‘A Camera is a big Responsibility’: a Lens for Analysing Children’s Visual Voices.” Visual Studies 25 (3): 224–237. doi:10.1080/1472586x.2010.523274.
