IVF Add-Ons: Building Bridges between Clinics, Regulators and Patients

The latest online event from PET (the Progress Educational Trust) focused on the Building Bridges project, part of the Remaking Fertility initiative based at Queen Mary University of London (QMUL).

The discussion brought together a range of expert speakers to discuss the project's work and related issues around IVF add-ons, evidence and patient choice. Sarah Norcross, director of PET, opened the event by explaining that add-ons are optional treatments, technologies or procedures offered alongside standard fertility treatment. They may not be supported by reliable evidence, and they often incur significant expense for patients.

Norcross conveyed the importance of the collaborative approach of the Building Bridges project, which has involved more than 70 diverse stakeholders including regulators, clinic business managers, patient advocates and charities. Through workshops, participants had identified key needs, priorities, and challenges and then sought pragmatic changes, rather than seeking an outright ban or blanket approval of add-ons. Findings from the workshops to date have been summarised in three research digests, which cover key insights and policy implications.

Dr Manuela Perrotta, principal investigator at the Building Bridges project and reader in technology and organisation at QMUL, was the first speaker. She outlined the main themes of the workshops, focusing on the provision of information about add-ons on fertility clinic websites, as well as transparency regarding treatment costs.

Dr Perrotta observed that even when add-ons are marketed in a way that acknowledges uncertainty about their benefits, their mere availability can still raise issues of potential exploitation. She acknowledged that information on websites should not replace patient-clinician consultations, but noted that research by the Human Fertilisation and Embryology Authority (HFEA) and Competition and Markets Authority (CMA) found that patients do rely on website information for treatment decisions, including add-ons.

She pointed to her own research, which showed that 90 percent of the websites of UK clinics that offer time-lapse imaging claim or imply that time-lapse imaging offers a benefit to IVF patients, despite there being insufficient evidence of effectiveness. Her research also showed that 47 percent of these websites do not link to the HFEA's online information about add-ons (as they are expected to do), and many do not provide clear cost information (see BioNews 1240).

Dr Perrotta stressed the need for ethical, sector-funded research, and also to improve the quality of information provided on fertility clinic websites.

Next Alex Davies-Jones, the Welsh Labour Parliamentary Candidate for Pontypridd, shared her personal struggles as a fertility patient and her determination to tackle transparency in IVF treatments and add-ons through a Fertility Treatment (Transparency) Bill. She stressed that treatments are often offered and sold without clarity over the likelihood of them working, to people who are at a vulnerable point in their lives.

She also highlighted other areas she hopes to address including the inequality of funding in different regions, the need for IVF provision to meet the NICE guideline, and improving the rights of workers undergoing fertility treatments (see BioNews 1242).

The next speaker - Dr Rachel Gregoire, incoming chair of the Association of Reproductive and Clinical Scientists (ARCS) and scientific director of the Hewitt Fertility Centre - focused on what feasible solutions, to improve evidence and quality of information on add-ons, could look like.

One suggestion was to adapt the existing HFEA database, which records the fate of every egg and embryo, to include information on which add-ons were used in each cycle. This could help gather retrospective data centrally. Another proposal was to produce neutral factsheets for each add-on, to counter misinformation on social media and websites. The British Fertility Society and ARCS are working to create a shared access area containing patient information leaflets.

Dr Gregoire noted a lack of agreement on what can legitimately be included as a chargeable add-on. She gave the example of the type of incubator a clinic uses, arguing that an incubator should be considered part of standard treatment and not an add-on. To close, she asserted that the majority of clinics are trying their best to give patients the best treatment available, but acknowledged that this can be clouded by confusion and misinformation.

Rachel Cutting, director of compliance and information at the HFEA, discussed the updated HFEA add-on rating system which provides an in-depth analysis of evidence for improving live birth rate, impacts on specific patient populations, and outcomes such as miscarriage and health risks.

Cutting explained that while the HFEA has some mandatory powers to improve practices and information provision, it has limited authority over marketing and clinic pricing. However, the regulator is collaborating with the CMA to try and address this. Cutting also agreed that the sector could explore voluntary sharing of add-ons data as part of existing clinic data reporting.

The final speaker, Kate Brian, co-founder of the Fertility Alliance and editor of the Journal of Fertility Counselling, focused on the patient advocate perspective. She highlighted the difficulty of being a fertility patient today, with access to an overwhelming amount of information that is often contradictory and hard to decipher.

Brian emphasised that patients are desperate for a successful outcome, and may try anything perceived as beneficial. She noted that when a clinician acknowledges that a specific add-on is not backed by evidence, this can lead patients to conclude that this is because it is a promising new cutting-edge option.

She called for evidence-based information and standardised factsheets with information on potential costs. She also discussed how peer support from other patients could help people to navigate the treatment process.

A poll of attendees at the PET event, asking them which actions and resources they thought would be most helpful for patients, showed that the audience supported the creation of standardised factsheets and a database to compare treatments and add-on costs across clinics.

The discussion that followed underscored the importance of transparency, and highlighted the commercial pressures driving add-on offerings. Speakers agreed on the need for better validation and evaluation of add-ons, to ensure that they genuinely improve patient outcomes. The session ended with thanks to Dr Perrotta for leading the project, and a collective commitment to driving meaningful conversations for change in fertility treatment transparency and information provision.