Information review

Overview

Legislative changes will require us to open up our Register to researchers and donors, and to broaden the rights of access for donor-conceived people. Also, centres will have new requirements for collecting and distributing information.

At its October meeting, the Authority adopted an ´Information Strategic Framework´ which sets out its ambition as an information provider and lists the many initiatives the Executive is undertaking to improve its collection, analysis, provision and wider use of information.

The HFEA Information Strategic Framework (82Kb)

Ensuring best practice in collecting and providing information 

At the HFEA we have put the following programme in place:

• instigating a root and branch review of internal and external information requirements
• developing disclosure of information policies covering Opening of the Register and Information for Researchers
• compliance with the Cabinet Office's Information Governance and Assurance Programme ensuring best practice in information governance
• upgrading IT systems to deliver additional information requirements
• undertaking a thorough review of the presentation of clinical data and the measurement of performance by licensed centres with consultation with clinicians and other stakeholders.

We are involving centres and stakeholders in the improvement of collection and provision of Information.

We are involving stakeholders throughout this process of developing our information provision. Three user forums have been organised with clinicians to discuss the new version of EDI and the future modification of Register Forms.

Meanwhile, we have been visiting centres up and down the country to directly seek your views.

From November, information presentation and the performance measurement of licensed centres will form an important part of the programme alongside the revised Code of Practice.

In addition, we will be organising events with researchers and patients, donors and members of the public to discuss their information requirements.

For further information contact Rachel Hopkins at rachel.hopkins@hfea.gov.uk

IVF success rates (1Mb)

HFEA, Information Provider (706Kb)
BFS summer college presentation, 2 September 2008.