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30 November 2006

 

Dear Colleague

HFEA Policy for the Publication or Withholding of Centre Data

The Authority has recently considered the circumstances under which the data related to a clinic will be published or withheld by the HFEA on its web site (for example within its interactive "Find a clinic" search facility).  The decisions resulting from this exercise follow:

1. The HFEA will withhold the publication of cycle and outcome data for a centre which has failed to co-operate with/support the verification process, or formally sign-off their entry.  Sign-off will be accepted through any written medium from the Person Responsible (PR) or a person of equivalent stature at the centre.
2. Where information comes to light leading the HFEA Executive to believe that the statistics previously published for a centre are inaccurate, the data will be withdrawn from the HFEA website provided a minimum of 7 working days notice has been given to the PR of the centre, enabling him/her to correct their data or provide evidence to support its accuracy.
3. Where publication of data is withheld, the information will be replaced with the following bold text:

 THE DATA FOR THIS CENTRE HAS BEEN WITHHELD FROM PUBLICATION

To ensure the accuracy of data published by the HFEA, every attempt has been made to verify the information previously received from this centre but at this point we are not confident in the data. 

The verification exercise carried out with centres ensures that the data held for their activities in the period is both comprehensive and accurate.  Crucially, it improves the HFEA's ability to answer Opening the Register requests from donor conceived offspring & their parents or from interested donors by filling potential gaps in the data sent by centres.  The HFEA does not take the decision to withhold data lightly and this fact should be taken into account by patients.

1. The Authority confirms that where centres are based in the same physical locality or are managed by the same staff members and where patients are freely moved between centres (demonstrated by evidence within the Register), because of potentially differing licensed activities, centres must be treated and reported as two separate entities.  Centres must ensure that the correct centre number is used to report all registrations, treatment activities and outcomes.
2.  Where centres are based in the same physical locality or are managed by the same staff members and where patients are freely moved between centres (demonstrated by evidence within the Register), if any one of the centres involved fails to co-operate fully with the verification exercise, the data for all related centres will be withheld from publication.
3. Where a centre has verified its information, but the results appear to sit well outside the national average range, then an inspection team will be sent to the centre to investigate the issue with the centre and prove the accuracy of the data.  Should the centre fail to provide sufficient evidence, the PR will be invited to discuss the figures with the HFEA Executive who may be advised by clinical members of the Authority.   Without sufficient evidence, the HFEA may subsequently decide to withhold the centre's data from publication.
4. Where a centre is very late at reporting (more than 90 calendar days have passed between an activity such as a registration, treatment or known outcome taking place) during the current financial year, the issue will be raised directly with the centre in writing.  Should the centre fail to supply Register information in a timely fashion as required by Directions, they will be reported to a License Committee and informed that their data is likely to be withheld from future publication because of concerns over its accuracy and comprehensiveness.

These decisions come into effect immediately.

Any queries concerning this letter should be referred to Richard Martin, Head of Information (0207 291 8270).

Yours sincerely

Angela McNab
Chief Executive

Page last updated: 24 August 2012

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