Welcome Sally Cheshire Chair Thursday 24 March, 2016

Leading the way pioneering new treatments –parliamentary approval for mitochondrial donation is a world first –new developments in genetic testing have power to revolutionise our lives making great leaps forward in embryo and stem cell research improving pregnancy rates whilst reducing multiple births being the first to create a robust, ethical regulatory system which engenders broad public support. The UK has led the way in so many areas:

Since 1991: Celebrating 25 years 250,000 IVF babies were born in the UK the number of IVF cycles has increased almost every year the live birth rate has increased from 14% to 26% 380 conditions have been licensed for PGD.

We have focused on high quality care for everyone affected by assisted reproduction. Our strategy for Key priorities: high quality, safe care raising standards improving outcomes informing patients. Excellence in: treatment PGD donation research innovation and best practice.

We are delivering real change through the new Clinic Portal, website and Choose a Fertility Clinic: Our strategy for being clear with patients about evidence-based treatment and care being transparent about the quality of care in each clinic –patient ratings –inspection ratings making it easier to communicate and transact with us improving sector-wide information.

Fertility trends report statistics cycle numbers continue to rise: 67,700 IVF and 2,500 donor insemination treatments the growth has largely been in frozen embryo transfers the birth rate is up: 26.5% for own fresh eggs and 25% for own frozen eggs the multiple birth rate is down: 15.3% for own fresh eggs and 14% for frozen. Our annual trends report reveals that:

Celebrating success – multiple births

Fertility trends report - egg freezing Egg freezing is more popular but still a niche treatment:

High quality care will also mean: Looking ahead to being clear with patients about evidence- based treatment and care being transparent about the full cost of treatment including add-ons making better use of the Register and good research to improve clinical care and outcomes enhancing our national and international reputation as a robust, ethical regulator overseeing safe, high quality care.

We have benefitted from your advice and support in: Working together for patients delivering high quality care with fewer incidents improving systems and practices in clinics our new inspection and compliance approach improving our patient information introducing the new support service delivering (almost!) our Information for Quality programme hosting clinic visits.

The new website and Choose a Fertility Clinic Juliet Tizzard Director of Strategy and Corporate Affairs

Why are we doing this? help patients navigate a stressful journey help patients and donors make better, more informed decisions improve the quality of care they receive. We think the new website will:

How have we gone about it? consulted widely and involved professionals and patients along the way carried out research to understand our audiences tested it as we’ve gone along taken our time, building something to last, but… something which can change. We have:

What has our research found? Audience by device Most visited pages

What has our research found? “I got information through my GP… through word of mouth and I looked into a well known fertility clinic and got a lot of information from their website as well and in mother related blogs and various forums.” There are three ‘cognitive’ types of users: Rational/critical thinkers Conformists Dependent/intuitive “A gynaecologist recommended a particular doctor at a particular clinic. So it's just through one person recommending one person.”

The website is: Our new website primarily for patients, donors and donor-conceived people part of a wider journey through fertility information – from NHS Choices to partner organisations clear, friendly, reassuring and easy to navigate.

Choose a Fertility Clinic is only right for people who know that they need specialist treatment is for researching clinics has comparable information without being a league table is not a predictor presents rounded information about the quality of the clinic’s service. A tool that :

Quality measures For each clinic, we will present three measures of quality: Quality measureWhat it measuresHow it is calculated Inspectors’ rating The clinic’s compliance at last licensing decision Length of licence mapped to 5 star rating Patients’ ratingPatient satisfactionQuestions with 5 star ratings Birth rateBirths per embryo transferred, all agesAll cycles for the preceding 12 months

Inspectors’ rating Patients keen to see our rating, but not to read inspection report Length of licenceVisible ratingProportion 4 years5 stars78% 3 years4 stars14% 2 years3 stars0 1 year2 stars8% Temporary1 star0

Statistical information is: Birth and multiple birth rates put into context split into three levels of detail top level data that focusses on consistency with national average second level data that contains births per embryo transferred, births per egg collection and multiple births third level data contains most of what we publish now.

What should you do? To make the most out of the website, you should: make sure the information about your clinic is up to date, when Clinic Portal is live help us publicise the patient ratings feature keep an eye on your reviews via Clinic Portal encourage your patients to use the website!

The new Clinic Portal Nick Jones Director of Compliance and Information

We think the Portal will enable you to: Why are we doing this? have a single point to transact with the HFEA: treatment data – applications - incidents access the information you need, as a licensed clinic, in one place (liberating our website) see at a glance the activities you need to do – to meet our, and your, requirements. better manage passwords save time and effort – yours and ours.

How have we gone about it? consulted you along the way and asked what you need tested it as we’ve gone along – with more testing to come taken our time, building something to last, but… …something which can change. We have:

Register treatment submission Information for Quality emerged from concerns about data submission. You said: ‒ the system is unforgiving and clunky ‒ forms upon forms – eg, error forms ‒ we can’t see what you can see or your traffic light system doesn’t work very well ‒ time consuming process of verification. Scheduled for release in October 2016 (with third party systems following). Please be patient

DictionaryMigration CleansingPolicy Data

DesignSecurity Your patient record system Analysis Getting it right

What’s next? Data cleansing April - July Clinic portal Beta testing June ‘16 Clinic portal R1 July ‘16 Data submissions (R2 -EDI) October ‘16 Data submissions (all) April ‘17 Data submissions (all) April ‘17

25 years of IVF regulation