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#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!