We are so glad to have hosted two more workshops on The IVF Experience with such kind and active participants! Natalie Silverman, from The Fertility Podcast, enthusiastically commented on the research findings we were introducing in dialogue with many others in our virtual room. We reflected upon how control can be difficult in the IVF journey, and about the benefits or challenges of sharing one’s experience with other patients during treatment. Some of our participants exchanged ideas about the resources available to fertility patients or donors when it comes to hormonal stimulation and egg pick-up, and they proposed some ways to make these experiences more bearable.
We had an interesting exchange about videos and images of embryos and how these may be received in very different ways according to when, where and how these were shared as well as personal preferences. We especially appreciated how people acknowledged each others’ points of view and how eager everyone was to hear about how research findings can contribute to improving care for patients.
These two workshops were the last of our 2021 public event series. We would like to sincerely thank everyone who has joined us for our events this year. Keep checking back on our Events page for information about our plans for 2022!
On November 9th we had the pleasure to host another stimulating workshop, organised in cooperation with the Progress Educational Trust. For this online workshop we invited health professionals, researchers and fertility patient advocates to discuss the topics of evidence production and fertility treatment add-ons. This workshop was the third in a series of workshops designed for professionals (see our reports of previous workshops with the Royal College of Nursing and Progress Educational Trust).
The goal of this most recent workshop was to share ideas about: what kind of evidence can be produced in this field and how; what information is and should be available to patients in relation to the various treatments on offer; and how patients understand the evidence to support the treatments available to them.
In the first part of the workshop, Manuela Perrotta presented significant findings from our research project. She focused on the polarised debate on treatment add-ons and evidence-based medicine, by illustrating the current state of evidence available on treatment add-ons and exploring some of the reasons for lack of quality evidence. On the basis of the project findings, Manuela invited all participants to reflect upon what alternative information might be available publicly to patients interested in those treatment.
Some of the topics evoked were explored further by Sarah Armstrong, who underlined the importance of studying patients’ evaluations of complementary and add-on treatments in IVF. In the next presentation, Jack Wilkinson called into question the very definition of add-ons and resonated on how evidence is to be produced and communicated, not only in relation to whether or not specific treatments or equipment positively affect live birth rates, but also in relation to concerns about reducing chances of conception and live births.
Drawing on research data from IVF patient interviews, Josie Hamper took the (virtual) stage to introduce the different ways in which patients understand the concept of evidence in relation to their own IVF treatment journeys. Josie called for careful consideration of how patients’ personal evaluations of evidence shape their decision-making about add-ons. Josie’s talk was followed by Katy Lindermann, who stressed how, in a context of uncertainty about evidence in relation to complementary treatments and add-ons in IVF, some patients are interested in knowing whether these can produce any harm. She called for more research and information to be made public on the possibility of harm.
Among the most fruitful moments of this two-hour long workshop were the conversations that happened in breakout rooms, where all participants got the chance to express their positions, ask each other questions and react to the presentations. The option of offering patients additional information on every treatment on the HFEA website was considered a necessity, while participants discussed the pros and cons of the HFEA’s current traffic light system. Some acknowledged the challenges for health professionals in managing patients’ expectations and appreciated the need to continue having conversations with patients about the current state of add-ons.
Altogether, participants recognised the need to bring more people into these discussions, including some more of those who promote the use of add-ons. Participants broadly agreed that this would enable a more nuanced conversation about the quality of information that patients receive in order to make decisions about their own fertility journey.
This workshop was part of our public engagement event series. It was funded by a Wellcome Trust public engagement grant.
On 11 November we were happy to host the second workshop in our series The IVF Experience (see our report of the opening event here). Sarah Norcross from the Progress Educational Trust was our special guest for the second time and she succeeded in making our workshop such a welcoming and warm one. Everyone who joined us got the chance to respond to the research data that we presented, and many shared personal reflections from their own experiences. Some people spoke about what they considered to be especially important during their fertility journeys, others shared feelings or thoughts about the experience of being given embryo videos or images during their treatment.
Participants appreciated the opportunity to see how their own experience related to research data and findings and to the accounts of other participants, and some underlined how they got the chance to bring home feelings they had but hadn’t been put into words yet. It was so rewarding for us to see how our research could contribute to making some people feel more equipped to think back on their experiences, and how this event also allowed one of our participants to learn more about infertility and fertility treatment through exchanges with others.
We look forward to meeting more people at our next online workshops. Natalie Silverman will be with us on the 20th and 24th of November!
See our Events page for more details about how to sign up for the next dates.
As part of our public engagement programme, we had the pleasure to host an extremely fascinating event ‘Time-lapse Imaging and the Debate on Evidence: A Social Science Perspective’, which we organised with the Progress Educational Trust (PET). For this event, we invited professionals involved in various aspects of IVF treatment to discuss, in a joint open conversation, some findings from our research regarding evidence production in IVF and patients’ perspectives on time-lapse embryo imaging.
In a two-and-a-half hour virtual meeting, Sarah Norcross, Jen Willows and Sandy Starr from PET moderated discussions in three break-out groups composed of gynaecologists, embryologists, nurses and counsellors who specialise in fertility. Project lead, Manuela, and researcher, Josie, introduced the project and its main results concerning the production of evidence in relation to time-lapse embryo imaging tools, and patients’ experiences of receiving videos of embryo development produced by these tools.
First, the three groups discussed the role of evidence in relation to IVF treatment and time-lapse embryo imaging in particular. Questions were raised about how evidence should be produced in the field of IVF, what counts as evidence and how different kinds of evidence production may be taken into account when making decisions about offering certain tools or treatments. Some conversation happened around how different perspectives come into play when considering time-lapse embryo imaging devices as lab equipment rather than as a part of treatment. Some of the discussions encouraged us to pay attention to the benefits for each actor involved when a new tool is being used in the lab. A few participants were especially interested in the underlying economic implications of considering time-lapse embryo imaging as an add-on to fertility treatment or, on the contrary, an investment for the lab. Some underlined how these two are embedded elements of IVF services when it comes to the private sector.
Manuela and Josie also called the audience’s attention to the need for fertility professionals to reflect upon how time-lapse embryo videos are shared with patients, where this happens, and when in relation to patients’ treatment and medical encounters. Workshop participants were confronted with quotes and questions about patients’ relationships to embryo images and videos during and after IVF treatment and they were asked to reflect upon their own professional experience with this. Counsellors especially shared experiences about patients who had particular relationships to visuals during treatment and underlined how communication around such imagery is key to patients’ understanding of their treatment.
At the end of the workshop, some of the participants expressed their intention to build reflections that emerged from the workshop into their work practice, especially about how and when to share images and videos with patients, and how to make this a positive experience for them.
Three months after our event on Visions of Reproduction at the Being Human Festival, we are glad to offer a new way to engage with our research project. If you are more comfortable with hearing than reading about vision (no jokes!), connect and listen to the wonderful podcast that Natalie Silverman has produced for The Fertility Podcast (also embedded below).
In this podcast, Natalie accompanies the audience through the topic of visualising reproduction in historical, sociological and aesthetic terms, introducing and interrogating expert scholars and artists whose work dives into visual representations of conception, pregnancy, and miscarriage. The listening experience is a gripping one, where vision becomes imagination, shaped by the words of people who describe the making and meaning of imagery in ancient books, biology labs, contemporary fertility clinics, and in personal artistic creations and performance. We hope you enjoy!
Natalie Silverman, founder and voice of the Fertility Podcast, led the audience through our first event ‘Visions of Reproduction’ where speakers shared and discussed a wide range of videos, pictures, drawings, prints and embroideries of embryos, foetuses, pregnancy tests, pregnant and not pregnant bodies.
As part of this event, we ran a poll among the audience asking them (anonymously) to enter three images about reproduction that they had come across in their life. We received so many fascinating responses! Pregnancy tests, ultrasound and embryo were definitely the most chosen words, but people had also come across paintings, celebrity pregnancy photos, a real-life foetus-museum, 3D scans and many more. People are confronted with reproductive images multiple times in their lives and in very different situations.
Josie Hamper, from our research team, opened the event by presenting some unpublished results from the study. She launched a poll where the audience was invited to select the correct description for an image shown on-screen. People selected almost all available answers, including: A human embryo; An IVF embryo; Eight cell embryo; Grade one embryo; A potential baby; and baby’s first picture. It was revealed that all answers did in fact describe the image and that the diverse responses reflect different perspectives according to people’s expertise, experience or agendas. Josie accompanied the audience through the data of her own research on IVF patient’s experiences of receiving time-lapse videos of embryo development. She illustrated how videos may be welcome by some who receive them, while creating more uncertainties for others, especially if they feel unequipped to interpret what they are seeing. She ended by inviting a more nuanced public discussion around time-lapse embryo imaging technology, and the use of the videos and images that derive from this technology, beyond the clinic.
This question was taken up by Tabitha Moses who talked about her artwork around IVF experiences, involving photography and intricately embroidered hospital gowns. She accompanied the audience through the experience of various visualising technologies throughout infertility journeys, IVF treatments and pregnancy loss, and she discussed the possibility of trusting or privileging the feeling of a pregnancy through quickening or other embodied sensations, including those of pregnancy loss, over the images produced through medical technologies.
Tabitha Moses, Investment, Tabitha, 2014. Photo portrait by Jon Barraclough. Used here with permission from the artist.
Isabel Davis developed the theme of vision versus feeling in her talk on the history of potential pregnancy. She dealt with the experience of un-pregnancy, meaning the condition of not really being pregnant yet but possibly being, through the work of natural scientist William Harvey on non-generation. Isabel’s talk prompted us to reflect upon ambiguous moments after a non-protected heterosexual intercourse takes place or after an embryo transfer where someone may wonder whether or not a pregnancy has started. These are all important dimensions of reproductive imagination and experience.
The topic of the uncertain time where pregnancy is not (yet) but could be is something Liv Pennington also reflected on when she talked about her artwork on pregnancy tests and the challenges of photographing them on different occasions. Liv’s talk accompanied the audience through her performative artwork Private View, which took place in 2002 and in 2019, and how the performance differed in so many ways between these dates as people’s relationships to pregnancy tests, images and sharing have changed, for instance through the increased familiarity with sharing and commenting on images via social media. Liv reflected on how visualising a pregnancy test result opens up possibilities that may change over time and how this makes her work controversial because of the vulnerability involved in exposing someone’s private reproductive moment while acknowledging the dynamic and uncertain process of pregnancy.
Liv Pennington, Private View, 2006. Used here with permission from the artist.
Funnily enough, technical issues prevented Liv from sharing her slides with the audience, which meant that we relied on Liv’s descriptions of her images, her facial expressions and ability to represent pictures through words. An experience that turned out to be powerful for an event on visualisation!
Nick Hopwood was the last speaker on the panel. His contribution proposed a long-term historical perspective on images of embryos and foetuses to unpack how the ordering of these along a narrative of development has, since the late eighteen century, come to stand for the course of a pregnancy. Nick underlined how images of reproduction produced over the last centuries have overwhelmingly represented a linear process, leaving out experiences of miscarriage or unsuccessful stories of fertility treatment, both of which are frequent ‘events’ in people’s reproductive lives, but underrepresented and thus erroneously considered the exception.
A conversation among all the speakers, with questions asked by the audience, allowed everyone to engage with the common threads or connections among such different approaches to common and less common reproductive images. The conversations highlighted how these images evoke questions of temporality in reproductive processes; how selection and standardisation have been embedded in the use and fruition of images concerning reproduction in the last centuries; and how images have been used for defining normality, normal variations and abnormality. The talks and discussion especially emphasised how a certain production and use of images facilitates the diffusion of dominant narratives of reproduction, leaving out meaningful and relevant experiences, which do not find space in the public representation.
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We are exceptionally grateful to all the speakers and the audience who made this panel so engaging and rich in content. We also want to extend our thanks to the Centre for Public Engagement at Queen Mary and the Being Human Festival for making this event possible.
Keep an eye out for further details about our next events!
