HFEA conference 2014
Information for Quality
Emer O’Toole
Information Manager
26 February 2014
#hfeaconference2014
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 donorconceived people.
Research tool
Informed patient choice
Register
purposes
Donor conception
information
Intelligent regulation
Record of all
treatment
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
Identifiers
Patients, partners,
intended parents, Donors
Stimulation & Egg
collection
Result of Embryo transfer
Embryo creation including
gamete providers, use,
storage, donation
Baby/birth details
Data Dictionary Project
Group Exercise
Your chance to directly input into the first Data Dictionary
Experts Group meeting!
Thank you.
Contact:
Emer.o’toole@hfea.gov.uk
#hfeaconference2014