Biomedical imaging technologies, professional and lay visions

Tag: Research

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. 

Nordic STS conference 2021

We were very pleased that two papers from the project were presented at the Nordic Science and Technology Studies conference on 20-21 May, which was hosted (online) by Copenhagen Business School. I presented a paper on IVF treatment ‘add-ons’ from the perspectives of IVF patients and partners, fertility professionals, and the UK regulator. This paper explored the category of add-ons as something that exists ‘outside’ or on the boundary of what is considered ‘routine’ IVF. It considered how such a category works differently across national regulation, professional practice and patient experiences of treatment. Manuela presented a paper on ‘the travel of reproductive imaging from the lab to the social world’, drawing on material from patient interviews to explore what happens when images of embryos are encountered outside of the lab or clinic setting.

Now that all of our fieldwork is completed, we are excited to be able to start thinking across all the elements of our research. We will be sharing more of these findings over the course of the next months.

Patients and IVF add on treatments

Since the start of the ‘Remaking the Human Body’ project there have been some significant developments in debates around the state of fertility treatment in the UK. Just over two years ago, BBC Panorama presented a documentary entitled Inside Britain’s Fertility Business (28 November 2016) that questioned the quality of scientific evidence to support ‘add on’ treatments in IVF. In this context, add ons refer to treatments, procedures or tests that are offered in addition to ‘standard’ IVF. These are often available to patients at additional monetary cost.

The Panorama documentary emphasised that some treatments are offered to fertility patients without being supported by rigorous evidence that they work, and it set out concerns about patients not being fully informed about the limitations of these treatment options. Designed to provoke, the documentary opened with three questions that revolve around trust, effectiveness and patient protection (reproduced in direct quotation here): can we trust everything Britain’s multimillion pound fertility industry tells us; how effective are the treatments offered to thousands of couples by fertility doctors; and should Britain’s fertility patients be better protected?

The discussion around add ons was once again reinvigorated following the publication of findings from a randomised control trial undertaken in Australia that presented no clear evidence that one particular add on, the endometrial scratch (where the lining of the womb is ‘scratched’ to help the embryo implant), improves live birth rates. This research was presented at a European embryology conference (see Alina Geampana’s post on her visit to this conference here) and prompted media attention to the moral quandaries of patients undergoing, and often paying for, treatments that are still-to-be proven (see for instance this article by the Guardian).

The position of time-lapse embryo imaging

It has been important for the research project to follow discussions about add ons, given that time-lapse embryo imaging technologies are included in the Human Fertilisation and Embryology Authority’s (HFEA) list of add on treatments, and I am particularly interested in how these debates might relate to patient experiences of IVF. At the time of writing, the HFEA categorises time-lapse as ‘amber’ in their traffic light rating system, which means that early studies on the effectiveness and safety of time-lapse have produced promising results but more evidence is needed to support its use.

Improving patient information

Since the Panorama documentary, questions about add on treatments continue to shape the UK media landscape around reproductive technologies and have periodically re-emerged in public debates. These debates often revolve around the need to improve the information that is provided to patients about their treatment options. For instance, the HFEA’s 2017-2020 strategy includes the aim to ‘increase patients’ understanding of the science and evidence base behind treatments and added extras known as add ons, and of their safety and effectiveness.’ Following this, in the summer of 2017 the HFEA launched a fertility patient survey that investigated patient experiences of add on treatments. While the majority of respondents (at 66%) felt satisfied with the information they received about add ons and their evidence base, a large proportion (at 34%) also felt that they had not received enough information and 44% rated their overall experience of being offered add on treatments as negative. Concerns that patients had about add ons were often related to the price of treatment combined with complex emotional pressures to try ‘anything’ in the hope that it might work. A summary of the 2017 survey results can be found here.

A more extensive follow up survey was commissioned by the HFEA during 2018. The results of this survey showed that 77% of fertility clinic users who had used an add on were satisfied with how open and transparent the costs of these were. And 69% felt that they understood the scientific evidence around the effectiveness of add on treatments. Interestingly, this survey included a much broader categorisation of add on treatments than the official definition that appears on the HFEA’s website; for instance, it included massage, meditation and ‘other complimentary treatments’ within the response options for add on treatments. Importantly, the survey also found that patients’ experiences of add ons was shaped by whether they were undertaking fertility treatment on the NHS or privately, as well as how many cycles they had been through so far, where people in later rounds of IVF were more likely to consider additional treatment options. The full 2018 survey report can be found here.

In the summer of 2018, the HFEA published the 9th edition of their code of practice, which includes new and more explicit text that requires fertility clinics to inform prospective fertility patients about the add ons that they may be offered, as well as any evidence of their effectiveness or potential risks. This is significant in that it places the responsibility to provide appropriate information on clinics rather than relying on individual patients to make informed choices. Later on in the autumn, the HFEA also published a short statement about add on treatments, which once again emphasised that fertility patients ‘deserve consistent, evidence based treatment’ and reiterated their concern ‘that too many patients are being offered unproven treatment add-ons.

Patient information, evidence and hope

The HFEA plays a central role in shaping the regulatory framework around fertility treatment by emphasising the importance of unbiased, clear information; however the Panorama documentary touched on an important difficulty in the debate around add ons, which is the disconnect between a commitment to evidence in a fast-moving medical field and the fact that patients are drawn to the promise of hope in navigating their treatment options. While Panorama highlighted that hope is not a good enough justification for using treatments that are unproven, from a patients’ perspective the offering of hope may have extremely powerful appeal. As one IVF patient explains at the end of the documentary: ‘with all these add on treatments, it kept us going that there is still hope.’ Fertility author Jessica Hepburn has also written very poignantly about her desire to ‘try anything’ – regardless of whether it is evidence based – during her eleven attempted IVF cycles.

The conventional notions of patient information and ‘informed choice’ are important but do not fully recognise all the other factors that impact on how people feel about their treatment options and how they weigh up the perceived harms versus potential benefits. Hope, for instance, is a very central emotion and strategy that plays into patient experiences of IVF as well as their treatment decision-making. The importance of having hope makes a lot of sense given that patients are undertaking a procedure that has, according to the HFEA, a less than 30% success rate. Our interviews with IVF patients in this project are still ongoing, yet there are already narratives emerging from the interview material that offer some initial insight into the complex nature of making decisions in a context where consequences and outcomes are, at least partially, unknown.

Advisory Board Meeting

On 27 November the research team hosted an advisory board lunch and meeting where we discussed the progress of the project so far. Manuela Perrotta introduced the background to the research framing and design, followed by short presentations on the fieldwork completed. I summarised the interviews with IVF patients and Alina Geampana talked about the professional interviews and lab observation work. The advisory board consists of individuals with a wide range of multidisciplinary expertise, which elicited lots of constructive questions, comments and recommendations that we will take forward. We are excited to further explore the opportunities that come with being exposed to – and challenged by – perspectives, methods and literature from other disciplines and fields of research.

Why we go to the Fertility Show

For the last couple of years, the research team has attended the annual Fertility Show in London. Now in its tenth year of existence, the Fertility Show has emerged as a key event for people who are interested in learning more about family making, infertility and the world of fertility treatment. This year, which also marks the 40th anniversary of IVF, the show hosted over 100 exhibitors from the UK and beyond, over 50 seminars, and thousands of visitors over the course of the weekend. All sorts of exhibitors were present; ranging from clinicians, doctors and practitioners who specialise in all aspects of reproductive health and medicine, advice groups, trusts and charities, financial and legal consultants, lifestyle and nutrition advisors, holistic therapists, acupuncturists, and many more.

For the research team, being at the Fertility Show is a chance to learn about technological innovations that are taking place in the world of IVF as well as how these are presented to people who are considering this type of fertility procedure. In other words, the show offers an insight into how professionals communicate their expertise to the non-expert ‘general public’, which can tell us something important about how science and technology ‘operate’ in the world. In practice, we divided ourselves across the two days to attend seminars, explore the stands, talk to fertility professionals and collect written material, such as flyers and information booklets, to add to our growing archive.

While the quantity of printed material can be overwhelming, as a collection it tells us a lot about how the possibilities and technologies of conception are dynamic and continuously evolving. Of special interest to me is how imagery and visual aids are used to communicate information. This includes medical illustrations, diagrams, charts, ultrasound imagery and product images, as well as all the other photographs that are used to frame information in very particular (and sometimes quite peculiar) ways. The most obvious observation with regards to the latter is the proliferation of pregnancy images, which often focus on the ‘baby bump’, and pictures of the wished-for child. Broadening out we might think about how this visual material presents male and female reproductive bodies differently or about the assumptions that are made about what constitutes a ‘family’ in this context.

Talking to people at the show is also an opportunity to tell them about our research, which often involves challenging ourselves to effectively explain the value of social science in an otherwise heavily medicalised field. This is not an unfamiliar contention for researchers who employ qualitative methods, such as interviews, visual analysis and ethnographic observation, as opposed to research methods that are associated with the ‘hard sciences’, which often involve quantification.

Needless to say, medical and scientific research is absolutely fundamental to the advancement of effective and safe fertility treatment. But as social scientists we are equipped with tools that allow us to offer differently nuanced pictures of the everyday practices through which scientific knowledge is made, and how these processes of knowledge production and translation are regularly tied up with social, cultural, relational and emotional dimensions of lived experience that are rooted in particular contexts. This kind of insight is particularly important as new technologies are introduced and negotiated by both IVF professionals and patients – what do these technologies mean to people and how are they made sense of?

In addition to exploring and learning at this year’s show, being in this environment provokes considerations that should be at the forefront of any research project: about what our research can offer and how to communicate its value to others.

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