We invite you to a free online event organised in collaboration with the Progress Educational Trust. Some of our findings from the Remaking the Human Body project will be presented at this event.
Title: Adding up what we know: A global perspective on fertility treatment add-ons
Date: 26 January 2022, 5.30pm – 7.30pm.
Further details and registration can be found here.
During this event, a panel of speakers will present a global perspective on fertility treatment ‘add-ons‘ – optional treatments or procedures offered alongside IVF, often at considerable expense to the patient, which may not be supported by reliable evidence. The event is open to all; fertility professionals, fertility patients and anyone else who might be interested.
Please join us!
This event marks the end of our public engagement event series. A list of our previous events can be found on our Events page.
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!
Over the past few months, the research team has participated in a number of events where we have discussed our findings and engaged in stimulating conversations with IVF patients and professionals (you can see a list of our past events and links to event reports on the Events page). In many of these conversations, we offered reflections based on the results of our social science research project, often focused on the debate on evidence and treatment add-ons. As this debate is very polarised, we have sought to highlight how our findings show a variety of perspectives on add-ons and their use, from the points of view of both professionals and patients. For instance, in our written evidence to the UK government’s Women’s Health Strategy, we underlined how the patients we interviewed expressed concerns regarding the abundance of information available online on IVF treatments (and especially add-ons) from multiple sources. Patients are exposed to a variety of claims without being able to assess their reliability. In contrast, the HFEA website offers impartial, accurate and up-to-date information, but this is currently limited to the evidence available to determine whether, for most fertility patients, a certain add-on is effective at improving the chances of having a baby.
This tool offers great clarity in terms of available evidence for both professionals and patients, but, as the evidence supporting add-ons is still scarce or of low quality, none of the add-ons on the list are currently green. In addition, and in some circumstances, add-ons may be offered for reasons other than to improve the chances of having a baby. To enable patients to better-understand the risks and potential benefits for each add-on, in April 2021 the HFEA included a list of questions that patients might ask their clinicians when discussing add-ons. These questions include a variety of aspects, such as: Is there good-quality evidence to back this up? Are there any associated risks or side effects from having this add-on? Am I assured that it is safe? and Do I know about any possible risks?
Both in our discussions with patients during our The IVF Experience events (which you can read about here and here) and in our interview with BBC reporter Sophie Sulehria as part of the Fertility Show’s live seminar series, we discussed these same issues, and how our research findings can support patients’ informed decisions. In particular, in our interviews with IVF professionals, different understandings of the meaning of the HFEA traffic light system emerged. Some interviewees understood the add-ons marked red as the problematic one, while they were more lenient toward those marked amber as they considered these promising. Other professionals, instead, were more worried about the add-ons marked amber. For this group in fact, add-ons marked red are clearly-identifiable as lacking supporting evidence, while amber ones might give patients the illusion of being more effective, while in actuality there is, equally, no evidence supporting them. Similarly, our interviews with patients show very different understandings of what constitutes “evidence”. Josie Hamper and I are currently working on an academic journal article that discusses four different approaches to evidence in relation to IVF treatment add-ons. While the majority of our patient participants preferred to delegate evaluations of evidence in IVF and follow the advice of their clinic or consultant in relation to treatment decision-making, other interviewees had a more direct assessment of evidence: some engaged in critical evaluations of evidence; others acknowledged the complex process of making evidence; and others relied on embodied experiences of evidence. With such a variety of points of views, a discussion on what kind of misunderstandings these may create with health professionals and institutional bodies is needed. We attempted to foster this discussion with one of our video animations: What is Evidence in IVF?
Drawing on our research and these discussions, we elaborated a proposal that goes in the direction of offering more information to patients, that we presented in our last workshop in collaboration with PET. In line with the ongoing HFEA discussion on how best to evolve the rating system for add-ons information and to consider the strength of the evidence base for each add-on, we suggested two main additions.
Firstly, we suggest including other criteria of evaluation for each add-on, including not only the available evidence on the ability of an add-on to improve the chances of having a baby, but also other relevant aspects for patients. This might include their safety and other potential effects on patients’ experience of IVF; for instance, the reduction of miscarriages and the reduction of time to conception. This would offer concrete support to make informed decisions for all the patients who are considering including add-ons in their treatment for reasons other than, exclusively, so as to improve the chances of having a baby. In addition, this would offer all patients more detailed information on each add-on, which they can then further discuss with their consultant.
Secondly, we suggest including additional indications on the quality of evidence available. Considering the current lack of quality evidence (i.e., more than one high quality RCT), including information regarding lower quality evidence – while highlighting that this evidence is not the best possibly available – would benefit those patients who need more clarity on why some recommendations are offered. In this case too, having reliable and detailed information available would enable patients to engage in conversations with their clinics on what the good-quality evidence they use to back up the use of add-ons is.
We anticipated two main disadvantages on offering such a detailed level of information: first, collecting and evaluating these different forms of evidence is time- and labour-intensive, and it would be a “village” effort requiring the collaboration of many members of the scientific community; second, making publicly available a summary of the currently available evidence would require agreement on a number of principles on what evidence should be included and what is too low-quality to be considered. Based on our findings, we believe being able to receive information from one reliable source would benefit many patients who are currently having to navigate information from a vast range of sources, many of which are less reliable.
During the workshop, an interesting discussion emerged on the use of the term “safety” among the criteria we suggested. For some workshop participants, this term is too ambiguous, means different things for various people and would be difficult to implement in terms of assessment. A suggestion by Katy Linderman, one of the guest speakers at the event, was to offer additional information on the potential “harm” that add-ons might have, including the risk of reducing the chances of having a baby through IVF. In line with the current HFEA discussion, it is extremely important to distinguish between the lack of evidence on a certain add-on, and the available evidence that an add-on is not safe (i.e. might somehow harm patients or reduce rather than increase their chances of having a baby through IVF).
Based on our research results and expertise, it is important for us to clarify: our proposal to share publicly the available evidence to best support informed decisions focuses on the content of the information that should be shared, rather than on how this is communicated. For this reason, we are not suggesting changes in colours or to add symbols in the visual representation of a ranking systems. Other research groups working on the best ways visually to share information are better positioned than us to provide recommendation on this.
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.
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.
The project team were present at this year’s Modern Family Show and the Fertility Show Online Summit. The timing of these shows presented a perfect opportunity for us to share our new animations, which you can watch on our website here.
Our booth at the Fertility Show Online Summit contained lots of details about the research project, our publications and, of course, our videos. The research team enjoyed visiting other booths as well as the many excellent seminars that were on offer across the four days. It was great to virtually ‘meet’ other show participants in the summit’s online chat.
Later in September, Manuela and I were interviewed by BBC reporter Sophie Sulehria as part of the Fertility Show’s live seminar series, which extended into the weeks following the online summit. We thoroughly enjoyed speaking to Sophie and having a conversation about fertility patients’ and professionals’ perspectives on IVF treatment add-ons.
We also screened our videos at the Modern Family Show, which took place in central London on 18 September. Unfortunately, the research team was unable to attend the show in-person, but the videos were screened on the main stage during the event for all attendees to watch.
We were thrilled to launch our online event series ‘The IVF Experience’ this week. Our first workshop coincided with Fertility Network UK’s National Fertility Awareness Week, which is an whole week dedicated to having conversations about infertility and the realities of fertility treatment.
Our first workshop was hosted by Sarah Norcross from the The Progress Educational Trust. Workshop participants had wide-ranging experiences of and relationships to IVF, which fostered really important conversations about the complexities of treatment decision-making for patients, feelings of control and lack of control, and the role of embryo images.
We are excited to have more conversations with others at our next workshops! See our Events page for information about how to sign up.
In June 2021, Manuela Perrotta and I submitted written evidence to the UK government’s Women’s Health Strategy for England. We believe the consultation presents a key opportunity to improve the treatment experiences of IVF patients.
In our response, which you can find in full on our Publications page, we make five policy recommendations:
Women need a more coordinated provision of up-to-date information about IVF, especially information about novel IVF treatment add-ons
Improving the clarity, visibility and accessibility of already available information is a relatively low-cost measure that will bring timely positive change for IVF patients
There is an opportunity for the NHS A-Z website to direct IVF patients to the Human Fertilisation and Embryology Authority’s website for information specifically about new IVF treatment add-ons
Different understandings of evidence should be considered to improve the quality of information on new treatment add-ons
Accurate information about the nature of available evidence should be provided when treatment add-ons are experimental
We are very grateful to Inflect Partners for their advice in preparing our submission for this call.
In the evening of 9 June our event ‘The IVF Experience and Positive Outcomes: A Social Science Perspective’ took place online in collaboration with the Royal College of Nursing Library & Archives. We were excited that so many people were able to attend from all over the UK (one of the definite benefits of online events). Our audience consisted of Royal College of Nursing members as well as many others who had experience of IVF or were simply interested to learn more about our research.
Sarah Norcross from the Progress Educational Trust opened the event as our host. Project lead, Manuela, introduced the Remaking the Human Body project as a whole, which has involved research with a wide range of fertility professionals as well as IVF patients and their partners. She then introduced the focus of the evening on the experiences of patients and partners going through IVF and what these tell us about the significance of care at different points in treatment.
In preparation for the workshop, Giulia, who manages our public engagement programme, had designed a series of live questions or small tasks that popped up for the audience at certain points during the evening. These questions offered a way for us to get a sense of the audience’s thoughts on the topics presented. It was exciting for us to see how people engaged with the research material and to see their reflections represented visually on-screen, for instance through word clouds like the one below.
In the second part of the workshop, I (a researcher on the project) presented an image of the ‘typical’ IVF treatment timeline that patients often see at the start of their treatment. These timelines, which are often found on fertility clinic websites or in their information booklets, usually emphasise the key moments in treatment such as hormone stimulation, egg and sperm collection, embryo transfer and pregnancy testing. They sometimes also provide some indication of a potential pregnancy and baby as the end point of treatment. Of course, these timelines have a very particular purpose, which is to provide a simple overview of what to expect during the treatment process and instil a sense of confidence in the procedure. But interviews with IVF patients and partners start to reveal all the other things that happen before, alongside, around and on top of these key milestones.
Our research explores peoples’ actual experiences of the IVF treatment process and how this impacts the decisions that they make and the kind of care that they need at different stages. Rather than present a neatly defined set of findings, the rest of the workshop involved a series of real quotes from interviews with patients and partners, which gave an insight into the diverse and complex lived experiences of IVF.
I will end this post with an example of an interview quote from our research with IVF patients, alongside the audience’s reflections on this quote in the form of a word cloud.
The research participant in the following quote explained how they went to a clinic consultation wanting to transfer two embryos in the same transfer procedure. They described having a conversation with their fertility consultant about this decision:
‘[The selection of embryos to transfer] was explained but kind of quite happily like “this is what we need to do and so this is what we recommend.” And the discussion around having two [embryos] put back in with the consultant here, they advised us to think about maybe only having one put back in but then talked to us about the reasons for that and the potential negatives of having two put back. And that was, felt like a really kind of good balanced discussion around what we wanted and what they would suggest.’
Then we asked the audience to think of words or tags that capture what is being said in the quote. This is what they suggested:
The audience’s interpretations of quotes offered the stimulus for a really thought-provoking discussion at the end of the workshop about care and what good quality care means in the context of IVF. The feedback from the event also suggested that people enjoyed the opportunity to get involved and share their own interpretations of the research material. We are excited to explore more innovative ways of using online events in the coming final stages of our project.
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.