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.
