18 May 2015
ByAppeared in BioNews 802
At this Progress Educational Trust (PET) event there was a lively debate about whether and how the Human Fertilisation and Embryology Authority (HFEA) should collect feedback from patients about fertility clinics across the UK and publish it on its website.
The chair of the debate, Professor Adam Balen, who is an NHS consultant and also the chair of the British Fertility Society, set the stage for the debate by highlighting that fertility treatment in the UK is one of the most highly regulated and the most poorly funded areas of medicine; a lot of couples have to self-fund their treatments.
A rating system for NHS services is not a new practice and he described how he had looked at his GP surgery online and found it had a one star rating following just one review. He reviewed it and awarded it five stars, this changed its overall rating to three. He then discovered that there was nothing to prevent him submitting another review.
Having pointed out this flaw Professor Balen said that fertility patients are already asked to fill in questionnaires, and since this information exists, we need to decide where it should be published and who can access it.
Ms Juliet Tizzard, the director of strategy at the HFEA stated that as part of its work on Information for Quality, the HFEA aims to create standards for fertility clinics and to help patients in making informed decisions. How patient feedback will be incorporated into that is still work-in-progress. They would like to include more information in the 'choose a clinic' section of their website in addition to success rates to better reflect the quality of service and the experience. They want all the information they provide to be meaningful to the patients, representative of the cases seen and standardised to allow for comparison across fertility clinics in the UK.
The overarching aim is to help patients to choose a clinic, and to incentivise fertility clinics to improve quality of care. Tizzard emphasised what the HFEA is proposing is not like TripAdvisor and that she is open to suggestions from the panel and the audience.
The next speaker, Dr Yacoub Khalaf, who is the medical director of the Assisted Conception Unit at Guy's and St Thomas' Hospital, started by declaring his position in favour of the initiative.
Dr Khalaf used his experience of seeing patients day-in-day-out to argue that an informal review process is inevitable and already takes place, in waiting rooms and various web forums. Pregnancy success rates can be meaningful, but do not always relate to the quality of a clinic.
Dr Khalaf then pondered how such a service can be abused and how feedback can create mistrust in medical care. Using the analogy of a holiday, he asked how negative comments can affect your choice; all views are partly subjective.
Dr Khalaf concluded by saying that 'patients do not know how much we [the doctors] know, until they understand how much we care'.
Ms Susan Seenan, the chief executive of the patient support group, Infertility Network UK, immediately raised her concerns. She compared comments from two patients who had used the same clinic to demonstrate not only how subjective people's views are but also how those views are represented, for example with word clouds, makes a huge difference. She therefore argued that the criteria used to measure the quality of the patient experience should be objective and based on questions such whether there is access to counselling within acceptable time scale and whether it is separate from antenatal clinics and baby posters.
Seenan said that one negative comment is enough to ruin a reputation, and ultimately, she asked, how the NHS will compete with the private sector, when the latter has access to marketing experts and bigger budgets. Finishing her argument, she said that she could almost see a headline 'HFEA could face legal action over reviews' appearing in a newspaper and wondered whether the HFEA is asking for trouble.
So it was fitting that the last speaker was Ms Antonia Foster, a senior law associate specialising in reputation management and in media and commercial litigation. Foster warned that people are less guarded in what they say online and that people should be aware that just because they say it online, it does not mean that the law of defamation does not apply. If someone states a clinic runs late, for instance, does this amount to an allegation, she asked. The validity and reliability of the comments will have to be assessed, in her opinion. 'Publication of any kind of allegation is still a publication.' Foster also wanted to know whether clinics will be able to respond to negative comments, for how long comments will be in public view and at want point in the patient's treatment would their view be sought. And in terms of presentation, Ms Foster asked whether a 'TripAdvisor' rating system is the most suitable for fertility services.
Professor Balen opened the floor to questions which came in thick and fast from patients and professionals alike - many were concerned with how the system would work and wanted more details of what the HFEA was proposing. For example, would clinics have a right of reply; how long would the ratings stand for; what would happen if there was a substantial turnover of staff; would the number of reviewers be listed; and how could the HFEA prevent the feedback form being falsified or in some way manipulated either by someone who may want to damage a clinic's reputation or by a clinic trying to boost its star rating.
Tizzard had the chance to explain that the HFEA will not be offering a 'free-text' service and that they will state how many reviews there have been. As for avoiding abuse of the system she said that the HFEA would be tracking the IP addresses of those posting a review.
A warning note was sounded by a member of the audience who runs review websites who said that a clinic's marketing team will always find a way to sway the results.
Overall, I really enjoyed the debate. It was a very stimulating evening and I was left wondering whether while we were agonising over the complexity of a review system we were really being rather overprotective of the people who will read the reviews?