Information plays an increasingly important role in our lives and in the provision of public services. In health, education and many other areas of public interest, online services help people make better-informed choices, assist care professionals with providing data, and make quality of care transparent.
At the HFEA, we have a statutory duty to provide information to patients, donors, clinics and the public about fertility treatment. Our programme, Information for Quality (IfQ), is dedicated to improving the way we collect, analyse and publish information for the benefit of patients, donors, the children conceived from treatment and professionals working in the IVF sector.
One way of achieving this is to modernise the HFEA website and redesign Choose a Fertility Clinic - the website's online database enabling patients to access clinics' success rates, treatment options and inspection reports.
Feedback from user research has shown that although the website's content is considered to be well-written and informative, more needs to be done to make the information layout more intuitive to the 100,000 monthly website visitors and the 15,000 monthly Choose a Fertility Clinic visitors. Patients have asked that both resources need to be more user friendly, less complex and, ideally, the information should be organised around different patients' fertility journeys. They also want us to simplify how statistics - such as pregnancy rates - on Choose a Fertility Clinic are presented so that they become less confusing.
Prospective patients and donors also need more information to help them consider the treatment options that are available to them. This could be for licensed, non-licensed or overseas clinics, highlighting the risks and benefits of each.
Whilst success rates remain an important factor in patients' decisions around fertility treatment, there are other aspects which are just as important. These can range from a clinic's performance in an HFEA inspection report, waiting times and how a patient views how they have been cared for.
These are obvious improvements to make and we will be making them over the coming year. But before we start, we are seeking views about some more thorny issues. Throughout October through to 12 November 2014, the HFEA are consulting with the sector about proposed improvements. Here are just a few:
We want to use the best indicator that demonstrates a clinic's quality of service: how good they are at managing a patient's cycle and picking the best embryo(s) to transfer. It has been suggested that publishing 'births per embryo transferred' rates would be the fairest way of illustrating this. It could also benefit clinics that freeze embryos from all cycles and those that often carry out transfer single embryo transfer (because it is the best option for the patient) will not be disadvantaged.
Patients like to access the views of people who have been through fertility treatment and the HFEA are going to offer patient feedback on their website. Although this is something which we already do as part of our inspections, patients want to understand others' experiences on a clinic's Choose a Fertility Clinic profile. To do this, we could introduce a star rating system or an NHS-style 'friends and family' test, where a simple question such as 'Would you recommend this clinic to a family member or friend?' would be asked. Alternatively, patients could give feedback using free text.
The cost of treatment also has a significant bearing on choice of clinic. So, we are considering including information on the average cost of fertility treatment at individual clinics. Although we have no say over the prices that clinics charge, it has been suggested that patients would find it useful for clinics to self-report this information.
These are just a few of the areas around improvements to the website and Choose a Fertility Clinic. The full list of questions are available in the online consultation.
As well as improving the website, the consultation also considers questions around how clinics send treatment information to us. We want to encourage the submission of high-quality data and make it easier so clinics can spend more time with patients and less on administration. A win-win all round.