Meeting minutes

IfQ Programme
Human Fertilisation and Embryology Authority (HFEA)
Minutes of the Information for Quality (IfQ) Advisory Group meeting
23 July 2014
Held at etc venue, Tenter House, 45 Moorfields, Moorgate, London, EC2Y 9AE
Present:
Alan Thornhill (Chair)
Sue Avery (BFS Representative)
Alison Murdoch (Clinician)
Alastair Sutcliffe (Paediatric Epidemiologist)
Abha Maheshwari (Consultant Reproductive Medicine and Surgery)
Name kept confidential (Patient representative)
Hossam Abdalla (Authority member and Clinician)
Julie Henderson (HSCIC representative)
Karen Pooley (Senior Andrologist and Donor Co-ordinator)
Stephanie Herring (EDI expertise and Quality Manager)
Jason Kasraie (ACE Representative and Embryologist)
Isabel Traynor (Senior Nurse)
Chriss Eftekhar (Senior Nurse)
Apologies:
Daniel Brison (Reproductive Medicine Researcher)
Mike Arama - IfQ Programme Manager
Gill Foley – (HSCIC representative)
Juliet Tizzard (Director of Strategy and Corporate Affairs)
Staff present:
Kayleigh Adams – Inspections, Logistics and Project Officer
Helen Crutcher – IfQ Programme Support Officer
Kemi George – IfQ Stakeholder Engagement
Chris Hall – Information Compliance and Audit Manager (IfQ02 Project Manager)
Nick Jones – Director of Compliance and Information (Senior Responsible Owner – IfQ
Programme)
Emer O’Toole – Information Manager (IfQ01 Project Manager)
David Moysen - Head of IT
Trisram Dawahoo – Digital Communications Manager
Nick Irvine – IfQ05 Project Manager
Matthew Watts – Regulatory Policy Manager
1.
Welcome, apologies and introductions; minutes and matters arising
1.1
The Chair welcomed members and introduced Julie Henderson who was attending on
behalf of Gill Foley, the standing representative from the HSCIC.
1.2
The actions from 24 June 2014 meetings were received and a progress update was
given. The minutes of the meeting were accepted as correct.
1.3
The Chair informed the group about the outcome of the recent Expert Group feedback
exercise. On the whole Expert Group members are satisfied with the running of the
groups and feel that they are making valuable contributions. However some
improvements were identified, including the need for more neutrality of Chairs, better
tracking of parked issues to ensure they are not forgotten and ensuring that everyone
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is given ample opportunity to speak. The Chair asked that the Expert Group Chairs
take account of these in subsequent meetings.
1.4
A timeline was provided highlighting milestones around consultation over the summer.
The Advisory Group agreed to the following:

22 August 2014: Fluent Interaction officially report back to the IfQ05 and Expert
Groups to review and incorporate the findings in their final proposals

28 August 2014: Expert Groups to provide their issues for consultation to the
Executive

28 August 2014: Expert Groups to receive all Expert Group proposals

3 September 2014: Rearranged September Advisory Group meeting

24 September 2014: Advisory Group meeting cancelled

1 October 2014 to 12 November 2014: Consultation period

23 October 2014: Advisory Group meeting cancelled

18 November 2014: Consultation feedback to Expert and Advisory Group

3 December 2014: Expert Group proposals to Advisory Group

9 December 2014: Final discussion for Advisory Group and subsequent writing
of the Advisory Group Report to the Authority
2.
Stakeholder engagement
2.1
The Regulatory Policy Manager discussed plans for the consultation and explained the
importance of engaging with the sector on the potential changes.
2.2
The circulated paper covered how IfQ consultation is expected to take shape through
an online consultation document and survey as well as hosted workshops in London
and Manchester.
2.3
Existing stakeholder groups were also identified as a means to accessing specific
stakeholders, including those that the HFEA has set up, and those bodies that
Advisory Group members represent. Members agreed to solicit views during the
consultation period from their own membership groups and to feed this in through the
online survey that will be produced.
Action: Advisory group members representing or involved with professional bodies
should look to solicit views from their members during the consultation period
(Action 456).
2.4
Results from the consultation will be shared with the Expert Groups and considered
when putting together final proposals for the Advisory Group.
2.5
Some members expressed concern that there may be disagreement on how proposals
are presented to the sector and that the sector may not be in the position to know how
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proposals had been reached. Members were reassured that they would have sight of
the consultation document before it goes out and that the September Advisory Group
meeting will be where the proposals are finalised. Confirmation that the consultation
document would also provide the background to the proposals was also given.
2.6
An enquiry on whether the proposed consultation was in line with other projects was
acknowledged and that the HFEA do use other methods for consultation such as focus
groups but these were disproportionate for the IfQ programme.
2.7
Members will be updated on progress at the next Advisory Group meeting in early
September.
Action: Members to submit suggestion on the consultation plans paper by 29 July
2014 (Action 457).
3.
Expert Group feedback - IfQ01 Data Dictionary project update
3.1
The Expert Group is on target to have consultation ideas ready for the end of August.
It has considered the comments from IfQ02 and IfQ04 and the Chair is working on
version 9 of the data dictionary.
3.2
The discussion around the collection of data fields yielded some disagreement as
some members showed concern that reducing the collected data could result in the
sector missing important trends - potentially useful for research.
3.3
The Expert Group Chair reiterated that the data dictionary is not intended to be static
and if there are fields which are being proposed to be dropped members (and others
more generally) have an opportunity to include them by completing the justification
criteria. The option to conduct ‘flash collection’, where data is collected over a specific
timeframe, would also be available. Again this would be subject to justification.
3.4
The Chair raised a concern that the justification for collecting some data was for ‘safety
reasons’ although the responsibility for safety related to, say, culture media or
medication may lie with other authorities. The consensus of the group was that it was
the responsibility of the pharmaceutical companies who make them. It was also noted
that the fertility sector regulator was the only medical field to take on this additional
responsibility.
3.5
However members were asked to consider two things. Firstly, that as a specialist
regulator the HFEA is different from most and is often subject to particular scrutiny and
questioning. Secondly, if the data dictionary is going to be structured such that it
moves away from collecting particular data fields relating to safety which are dealt with
by another regulator, then it is important that the consultation document and the report
to Authority makes it clear that safety is still implicit in the overall recommendation of
the IfQ programme in line with the corporate strategy, but that some particular fields for
collection are not required.
3.6
The Chair also mentioned that the user guide for the data dictionary was still to be
written and that she would liaise with the Chair of IfQ02 in order to compose it.
Action: Chair of IfQ01 and IfQ02 to consult about the composition of the data
dictionary user guide (Action 458).
4.
Expert Group feedback - IfQ04 Data Reporting and Analytics Project update
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4.1
The Chair of IfQ04 reported on the progress of the Expert Group and that members
had agreed that they should be reporting quality data, success rates and donor
availability. Some of the areas covered the remit of other Expert Groups and it was
suggested that this be looked at by the relevant group.
4.2
One area that had been looked at was reporting on patient experience (similar to that
of IfQ05). The group thought such information beneficial but that it should not create
extra work for clinics, easy to administer and analyse, and useful to patients, clinics
and the HFEA. This would be shared further with IfQ05.
4.3
Reporting on success rates generated a lot of discussion. The Expert Group
suggested that the preferred method of presenting success rates should be as
cumulative pregnancy rate. However, they noted that this might not be possible
straight away, and that in the short term, they should be reported as live birth per
embryo transferred. The Chair of IfQ01 noted that the current set up of the data
dictionary would allow for either of these reporting methods to be used, however, what
is important is that the information is risk-adjusted to ensure accurate information is
provided.
4.4
The Expert Group identified that there is a need to report on donor waiting list as it was
suggested that clinics often refer patients to overseas clinics if they do not have
particular donors on their books
4.5
The Advisory Group discussed this suggestion but were concerned that this type of
information could not be reliably reported by the HFEA as it was unverifiable, was
constantly changing, and an ‘average waiting list’ would not clearly inform a patient
who wanted, for example, a non-Caucasian donor, that the waiting list may be much
longer than indicated.
4.6
Following the receipt of the draft data dictionary from IfQ01, the Chair set out some of
the additional data-fields that they considered should be collected. The discussions
were similar to that of earlier, whereby the Chair of the IfQ01 group noted that there
still remained disagreement about the appropriateness of collecting certain data items.
As such, the IfQ01 group suggested that should any group (or future stakeholders)
wish to collect new data, they should provide the relevant information that the IfQ01
group sets out to justify why the data is required. It was agreed that, in the future, the
HFEA would look to set up a standing group of stakeholders to review each request for
collecting new data, based on the justification provided.
4.7
It was also suggested that there should be an additional resource made available to
help stakeholders use the anonymised register to interpret the data correctly.
5.
Expert Group feedback - IfQ05 Websites and Publishing project update
5.1
Progress on the Expert Group was given by the Chair. Members were updated on the
user research, which had just finished clinic visits across the UK. Staff had been
observed interacting with the various communication channels such as EDI and
Clinical Portal and Fluent Interaction carried out interviews with staff to ascertain more
information.
5.2
Work on phase 2 of the user research continues as the website survey is in its final
stages. Expert Group members have been involved in the composition of the survey.
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5.3
The group have made advances in putting forward their issues for consultation. Issues
span all areas of the stakeholder template – we plan to, are minded to and we want
your views. Areas include patient feedback by using the inspection reports in a more
patient friendly way and success rate reporting through a dashboard.
5.4
The group have also explored a number of options regarding the website which
include patient pathways to inform website design, patient feedback using a star rating,
a clinic dashboard containing criteria for choosing a fertility clinic, and a user friendly
method for displaying inspection reports. Possible solutions are still to be decided.
5.5
The next steps for the Expert Group are to conclude the user research, continue to
work with IfQ03 to develop a list for the content management system and the
requirements for the website and discussions to be arranged with IfQ04 to determine
interdependencies between the groups.
6.
Expert Group feedback - IfQ02 Data Submission Project update
6.1. The Chair gave an update on the IfQ02 Expert Group, including work on ‘user stories’
which is being carried out by the Expert Group and the HFEA IT team to is explore
high level requirement on EDI.
6.1. Fluent Interaction have reported back on some initial findings from two site visits which
are consistent with feedback previously gathered from centre staff. Highlighted areas
were: a lack of contemporaneous validation; inflexibility of submission deadlines; and a
preference for a single comprehensive error report to eliminate the need to consult a
variety of error reports.
6.2. The group have considered the proposals of IfQ01on the data dictionary and are still to
finalise their recommendations.
6.3. The Expert Group are also still considering the implications of the Scisys technical
options appraisal report in preparation for their next meeting.
7.
Feedback and AOB
7.1. Members were thanked for their participation and reminded that the next scheduled
Advisory Group meeting would take place in early September and that members would
receive confirmation shortly.
Actions:
Action
ID
456
457
Action
Advisory group members
representing or involved
with professional bodies
should look to solicit views
from their members during
the consultation period
Members to submit
suggestion on the
Date
due
31
October
2014
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Status
Person Responsible
In progress
Kemi George
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458
consultation plans paper
by 29 July 2014
Members to submit
suggestion on the
consultation plans paper
Chair of IfQ01 and IfQ02
to consult about the
composition of the data
dictionary user guide
2 Jul y
2013
Completed
15
August
2014
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Matthew Watts
Alison Murdoch
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