Remaking the Human Body

Biomedical imaging technologies, professional and lay visions

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. 

PET’s annual conference: The current state and regulation of the fertility sector

At the beginning of December, we kept up our tradition of attending the Progress Educational Trust’s (PET) annual conference. The title and topic of this year’s online event was ‘Reproducing Regulation: Who Regulates Fertility and How?’ With 16 talks across the full day, I have chosen just a handful here that I thought were particularly pertinent to the issues that we consider in our research.

The first speaker of the day was Julia Chain, chair of the Human and Embryology Authority, who had made headlines in the run-up to the conference with her call for changes to the 1990 Human Fertility and Embryology Act. Her proposed changes would enable the HFEA to impose economic sanctions on fertility clinics that mis-sell unproven treatment add-ons. While she emphasised that her call was not a complete rejection of the current regulatory framework, she highlighted the need to update certain areas of the act to reflect the current state of society and the fertility sector. Currently, she noted, the HFEA has no powers to regulate the increasingly commercialised provision of services. Private fertility treatment is increasingly the norm in the UK, with 65% of IVF treatment being self-funded by patients themselves.

Reflecting on the commercialised fertility sector, Raj Mathur from the British Fertility Society brought attention to questions of fairness and equity and the lack of NHS funding for fertility treatment. Many prospective patients, he reminded us, do not have any access to IVF and when they do, affordability is a huge cause of concern. Mathur spoke about the challenges for patients who have to navigate very complex regulations around the provision of funding, before they even reach the point of having to choose between different treatment offerings.

A significant challenge to regulating the fertility sector is the fast pace of innovation. In her talk entitled ‘What is an add-on, and who gets to decide?’ Anja Bisgaard Pinborg, a specialist in reproductive medicine at Copenhagen University, detailed the difficulties of regulating add-ons safely without stifling the progress of medical research. She explained how the European Society of Human Reproduction and Embryology (ESHRE) is working on a new guideline for regulating add-ons. This guideline includes a very extensive range of tests, treatments and techniques, which reflects the vast and complex offerings of the fertility sector. While Bisgaard Pinborg recognised the obligation of clinics to offer the best treatment to their patients and the strong desires that patients may have to try certain (perhaps more experimental) treatments, she also highlighted that patients should never bear the cost of innovation. Patients, she argued, should not pay for add-ons that are still under development. How fertility patients and professionals navigate the complex world of IVF add-ons is something we have covered extensively in our research publications, workshops and in this blog post on how to best support patients’ informed decisions.

Further examples of how the law and regulation lag behind change were raised by Emily Jackson later in the day. Jackson set out how definitions of ‘mother’ in UK fertility law do not easily apply to the new social and family formations that are enabled though reproductive technologies. Currently, the legal definition of mother is defined in terms of who physically gives birth to a child. One of the examples presented by Jackson involved the case of a child that has two female parents at birth. In this case, the person who gives birth is the mother and the partner is the second legal parent. This is also the case when the partner’s egg was used in the IVF treatment. Interestingly in this case, as Jackson pointed out, the second parent is actually the child’s closer genetic relation. Fatherhood on the other hand, is expressed in both genetic and social terms, which allows for greater flexibility and choice in how fatherhood is defined. 

Again, this year’s PET conference succeeded in traversing a wide range of perspectives on the most pressing issues confronting the fertility sector right now.

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