#hfeaconference2014

26 February 2014

Emer O’Toole

Information Manager

Information for QualityHFEA conference 2014

Register overview

HFEA required by law to keep a Register of Information which records details of regulated assisted reproductive services in the UK

Recorded this information since HFE Act 1990 came into force:1 August 1991

Contains all births resulting from treatment services Licensed clinics are required by law to submit

information to the HFEA relating to each cycle of treatment

Everyone has a right to know if they were born as a result of licensed treatment

Particular focus on information for donor and donor-conceived people.

Register purposes

Informed patient choice

Record of all treatment

Intelligent regulation

Research tool

Donor conception information

Opening the Register

The HFEA received almost 300 OTR requests in the last financial year and the number of applications is increasing by approx. 25% each year

Donor-conceived people themselves accounted for approx.17% of the requests

Accurate responses to OTR requires the ability to track patients, embryos and donors across clinics as well as in individual clinics

In order to do this the HFEA has introduced a unique reference which relies on a wide range of information from forms submitted to ensure all treatments using an individual donor is identified when a donor usage report is run

This is also very important when linking donor-conceived people on Donor Sibling Link

Choose a Fertility Clinic

The HFEA have been providing clinic success rate information for prospective patient since the early 90’s

It gives patients a valuable tool to search for clinics in their local area, see their opening times and general information about the clinic along with information on possible treatment success

Choose a Fertility Clinic

It also enables prospective patients to see their likely success rates based on their egg and some general treatment types such as ICSI and IVF, fresh and frozen cycles, own and donor eggs

A lot of information from across the register is pulled together in order to present what patients have expressed a wish to see in a usable format

It also allows clinics to measure their performance in relation to other clinics who may have a similar demographic

Monthly an average there are 14500 individual hits on this section of the HFEA website

Register as a research tool

From October 2009: HFE Act 2008 allowed HFEA to release identifying information about patients’ treatment to researchers

Allows for linkage to other datasets HFEA has oversight and disclosure process Law requires:

- research to be in public interest & researchers must demonstrate why it cannot be carried out without access to identifying information

- researchers bound by confidentiality restrictions - applications only from recognised research institutions - research ethics committee approval first

HFEA also provides anonymous version of register for research

Sector Reports

The HFEA publish sector overview reports each year about the fertility sector with national information about success rates overall, children born using donor gametes etc.

Data Dictionary project

What’s included• Develop an agreed and defined data dictionary• Agreement on what data fields the HFEA collects, this may be

impacted by some of the other projects • Definition of exactly what is included/excluded for each piece of

data the HFEA collects• Agreed understanding of what each data field is used for e.g.

OTR or part of CaFC calculations• Impact assessment on clinic data submissions types and HFEA

internal systems• Sector liaison and agreement about the data set• Establish an expert group who can provide ongoing advice and

guidance regarding the HFEA data dictionary as required.

What’s excluded• Data submission systems, consent forms

Data Dictionary project

Expert Group

• Due to the diverse needs of the HFEA’s various audiences the expert group should reflect these where possible.

• There may be additional requirements on some group members more than others, for example the patient member may be involved in agreeing the dataset but may not be called on directly to help with data definitions in the same way as clinic staff

Data from Forms to Fields

IdentifiersPatients, partners, intended parents,

Donors Stimulation & Egg collection

Embryo creation including gamete providers, use, storage, donation Result of Embryo transfer

Baby/birth details

Data Dictionary Project

Group Exercise

Your chance to directly input into the first Data Dictionary Experts Group meeting!

Thank you.

Contact:

#hfeaconference2014

Emer.o’toole@hfea.gov.uk