If your registration and treatment period was between August 1991 and 1 October 2009

A clinician talking with a patient

Since 1 October 2009, under new legislation, researchers have been able to apply to access identifying information that was entered onto the Register between August 1991 and September 2009.

The information below is to help you decide if you are content that your identifying information might be used in research or if you would prefer to opt out.

 

What the identifying information might include

'Identifying information' is something that either alone or when combined with other information can lead to your identification by a third party. Examples of identifying information that is held on the HFEA Register may include your name and your date and place of birth.

 

Who might be allowed to use the identifying information

Identifying information will only be available to researchers linked to a recognised research institution for projects which have received approval from a research ethics committee and it will not be disclosed to other parties.

We would only provide identifying information if we think it really necessary to allow important research to be done.

 Also see:

 

How the identifying information would be used

Record linkage

The main use of identifying information is to link information held on different registers or databases.

Example:  

It is possible that researchers may want to link the HFEA Register on IVF with information on the NHS Central Register or data held by Hospital Episode Statistics and a minimum amount of identifying information (e.g. one or two identifiers) could be released in order to do this.

Medical research

Researchers could use identifying information to carry out medical research.

Example:  

Researchers could investigate the type of infertility patients have, their lifestyle in relation to their treatment outcome. Also, they could investigate the safety and efficacy of fertility treatments and develop new treatment and storage techniques.

Social science research

Researchers could use identifying information to carry out non-medical projects.

Example:  

Researchers could investigate the social characteristics (age, occupation, ethnic group) of those who seek fertility                     treatment, patients’ treatment experience or the effect of national policies such as the HFEA multiple births policy.

Non-contact research

Some research requires direct participation from patients and is known as contact research. Your centre will ask if you are willing to participate in this type of research. If you agree to this, a member of staff from your centre will contact you if there is a particular research study you may be suitable for. Your participation might range from minimal (such as a short questionnaire) to more extensive involvement (such as long-term longitudinal studies involving those born as a result of treatment). You will always be asked to give consent and will be free to withdraw this at any time until your information is used in the study.

The HFEA's role is to authorise, or otherwise, the use of identifying information in research where contact with patients, their partners and children is not required. Participation in contact research (i.e. research projects requiring direct contact with individuals whose data is held on the Register) is at the discretion of the individual's concerned.

 

Safeguarding your data and confidentiality

We are committed to safeguarding your confidential information. It will only be shared with researchers who are committed to the same standard.

  • Research project approval. All applications by researchers to access patient-identifying information on the HFEA register will have to be approved by the HFEA. 
  • Research institutions. Identifying information will only be available to researchers linked to a research institution on projects which have received approval from a research ethics committee and it will not be disclosed to other parties. 
  • Published findings. Where researchers publish their research findings, it will always be ensured that you cannot be identified from the published research. 
  • Ethics committee approval. The Ethics and Confidentiality Committee (ECC) of the National Information Governance Board for Health and Social Care (NIGB) will review all medical research applications to ensure that releasing the information is in the public’s interest. The NIGB will also make recommendations regarding the appropriateness of proposed linkage studies where researchers intend linking HFEA data to another dataset. 
  • Memorandum of Understanding between the HFEA and the NIGB (pdf 33 Kb) 

How to opt out

From 1 October 2009 researchers have been able to access identifying information held on the HFEA register unless you opt out of this type of research.

If you would like to opt out, complete the 'Opt-out form'. You must state that you wish to opt out and include your full name, name at birth (if different), date of birth, place of birth and the centre(s) where you were treated and the year your, or your partner’s, treatment(s) started.

Page last updated: 26 July 2012

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