Remaking the Human Body

Biomedical imaging technologies, professional and lay visions

Remaking the Human Body end of project online event

We are delighted to announce our upcoming webinar, marking the conclusion of the Remaking the Human Body project (2016/2023). The webinar is scheduled for October 4th, from 3 pm to 5 pm BST. Please save the date and reserve your spot via Eventbrite.

Event programme

3.00 – 3.10 Welcome

3.10 – 3.30 Time-lapse Imaging and the Add-ons Debate: An Overview of the Remaking the Human Body Project – Manuela Perrotta, Queen Mary University of London

3.30 – 3.50 Evidence Challenges and Professional Views on New Treatments in IVF – Alina Geampana, Durham University

3.50 – 4.10 Patients’ Perspectives on IVF Add-ons and Evidence – Josie Hamper, University of Oxford

4.10 – 4.30 Round Table: Experiences of Public Engagement

Giulia Zanini, Ca’ Foscari University of Venice

Manuela Perrotta, Queen Mary University of London

Alina Geampana, Durham University

Josie Hamper, University of Oxford

4.30 – 5.00 Q&A and Closing Remarks, chair – Marcin Smietana, Queen Mary University of London / University of Cambridge

Event overview

This event showcases the research conducted by Dr Manuela Perrotta and the study team as part of the Wellcome Trust-funded grant titled “Remaking the Human Body: Biomedical Imaging Technologies, Professional and Lay Visions” (Wellcome Trust Investigator Award, 2016-2023). Additionally, we will discuss the research team’s experiences within a related program of public engagement, funded by the Wellcome Trust (Wellcome Trust Research Enrichment, 2019-2023).

The Remaking the Human Body project aimed to investigate the integration of new visual technologies into In Vitro Fertilization (IVF), with a particular focus on time-lapse imaging. While our primary objective was initially to examine the relationships between these new visual technologies and professional and lay visions, a sudden shift in the public and medical discourse surrounding “add-ons”, including time-lapse imaging, necessitated an exploration of an additional research direction. The term “add-ons” is commonly used to describe costly supplementary investigations and interventions offered to patients despite a lack of sufficient evidence regarding their safety and effectiveness.

In this webinar we will provide an overview of the study and our findings through a series of short presentations by the Remaking the Human Body study team. The webinar will explore time-lapse imaging, in addition to addressing broader debates about add-ons. We hope that this event and our findings will stimulate discussions about the uncertainties in medical knowledge and the experiences of infertility among patients, as well as the related implications for policy and practice.

New publication on navigating IVF funding in the UK

A new publication is out in the journal Health & Place. The article is entitled Blurring the divide: Navigating the public/private landscape of fertility treatment in the UK and it is freely available here.

In this article, we draw on interviews with IVF patients and their partners to explore how the boundaries between public (NHS) and private fertility treatment provision are increasingly blurred. 

Key article highlights:

  • UK healthcare privatisation has had profound consequences for fertility patients
  • Fertility patients navigate hybrid public/private treatment arrangements
  • Both publicly and privately funded patients engage with a consumerist model of healthcare

New publication!

A new publication is out entitled Patient informed choice in the age of evidence-based medicine: IVF patients’ approaches to biomedical evidence and fertility treatment add-ons. It is open access and available online in the journal Sociology of Health & Illness.

In the article, we challenge the view of IVF patients as willing to uncritically accept or request unproven, expensive treatment as a desperate act to increase their chances of having a baby. Rather, patients are required to make complex treatment choices in a highly commercialised market and an uncertain context of reproductive medicine.

The key findings presented in the article are:

  • Patients are expected to make informed choices about what additional tests and treatments (add-ons) to include in IVF
  • Interviews with patients show how they negotiate the notion of medical evidence in relation to their own experience of going through IVF
  • Approximately half of the patients that we interviewed preferred to delegate the evaluation of evidence to their doctor (or other medical professional)
  • Yet across the whole participant group, we identified four different patient approaches to evidence in IVF
  • The patients interviewed described how they would:
    1. delegate evaluations of evidence to experts;
    2. critically assess available evidence;
    3. acknowledge the process of making evidence;
    4. contextualise evidence in their lived experience of infertility.

Our Poster at ESHRE 2022

This week, I have been attending the ESHRE conference online. Despite my fervent hope, the long-awaited moment to return to in-person conferences has not transpired and I had to revert to virtual participation. Being able to attend remotely was, unexpectedly, a great opportunity. The conference platform was highly effective, and I could follow all the presentations undisturbed, while sitting comfortably at my desk sipping coffee.

With our poster (you can find the abstract here) we wanted to shed light on an overlooked issue related to sharing Time-Lapse (TL) videos with patients. As our last published work shows, patients often watch the videos of their embryos for the first time at home, without the support of an embryologist to answer any questions that might arise. Even if patients are asked whether they want to receive embryo videos, what these videos show is not very clear to them, and they often do not know what to expect. As patients often associated embryo videos with a potential future baby, watching these videos without an appropriate explanation can cause confusion and potential distress. This potential is even higher when embryo videos are shared just after the transfer and before patients are even able to take a pregnancy test. To improve patients’ experience, we urge professionals to consider further how, where and when these videos are shared with patients.

I was very happy to see that our suggestion was welcomed by one of the main experts and author of the two Cochrane reviews on TL, Sarah Armstrong. In her talk, opening the session dedicated to “The current state of Time-Lapse technology”, she offered an overview of quantitative and qualitative studies available currently on TL. Although the focus of her talk was discussing current evidence of its clinical benefit, she also mentioned our work on patients’ experiences of receiving and watching embryos, opening up for a discussion on whether, when and how clinics should share embryo videos with their patients.

In this and another presentation, Sarah also shared the highlights of the VALUE study, an international qualitative study exploring patients’, embryologists’, and clinicians’ decisions to use non-evidence-based treatment ‘add-ons’. The early results of this study show some significant overlap with the results of our project. For instance, as we discussed in one of our previous publications, Sarah noticed how the decisions to use add-ons should be seen in the context of hope for both patients and professionals. Applying the current (missing) evidence is challenging for both professionals (as we have also discussed here) and patients (as we discuss in another article currently under review). Finally, she argued that patients don’t want to be denied add-ons but want autonomy in the form of informed consent. I really look forward to reading the detail of the VALUE study results.

The discussion on the lack of evidence on TL efficiency was not limited to these talks, as Dorit Kieslinger presented the results of the last RCT on TL: The SelecTIMO study. This study, including 1,731 women, investigated embryo culture in the Geri+ incubator and the Eeva® Test algorithm. Their results show that the use of TL, with or without algorithm-based selection, does not improve (cumulative) ongoing pregnancy and live birth rates and therefore its widespread use to increase success rate should be questioned. Despite the results, the discussion after the presentations followed the same logics we showed in our previous research. The audience questioned the evidence (results apply only to the incubator and algorithm examined, others could work better) and the need itself for TL to prove its efficacy in terms of increasing success rates (we use it because it’s a great piece of lab equipment). This discussion goes back to the origin of the problem, which for many does not seem to be if there is evidence to support the ongoing use of these tools, but rather that patients are charged for tools that might not increase their chances of having a baby. As a participant from Denmark commented, TL is very widespread among Danish labs but patients are not charged for its use, and nobody talks about add-ons.

It is interesting to see how the use of artificial intelligence (AI) is becoming more widespread in the field, without discussion regarding the evidence supporting it. A discussion in the General Assemby highlighted how all the current publications on the topic of AI, do not offer any information on the data, the data points measured, or the content of the algorithms, justified in terms of the defence of intellectual property. It is perhaps surprising that here, unlike in the debate on add-ons, the question of evidence seems to have been overlooked.

Government plans for a Women’s Health Strategy in England

In June 2021 Manuela Perrotta and I responded to the government’s call for evidence to inform their forthcoming Women’s Health Strategy for England. The government consultation received over 110,000 public survey responses and over 400 written responses. Just before the December holidays, the Department of Health & Social Care published their vision for the Strategy based on the responses received. Reflecting the sentiments shared in the public survey, the department’s vision highlights fertility, pregnancy, pregnancy loss and postnatal support as particular areas of concern. This grouping of priority areas was the second most selected option across all survey participants (after menstrual health and gynaecological conditions), and the most selected priority area for those aged 30 to 39. Infertility and fertility treatment are integral parts of this broader concern with reproductive and maternal health.

The vision document highlights the need for ‘more trusted and easier to understand information’ about women’s health issues, including reproductive health, which is a key point that we address in our written evidence. In our submission we emphasised that there is an abundance of information about infertility and fertility treatments, especially online. But prospective and current fertility patients often find the information difficult to navigate and identifying good quality information can be challenging. We found that our study participants generally felt that NHS websites offered good sources of reliable information. In our written evidence, we suggest ways for NHS websites to expand their remit to cater for fertility patients’ needs. We were excited therefore, to learn that one of the next steps for the Strategy will be to progress the quality of online information in collaboration with NHS Digital. We hope that the needs of fertility patients will be addressed in this continued work. We also look forward to following further developments as well as the government’s dedicated Sexual and Reproductive Health Strategy, which is expected later this year. 

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