Patient Engagement Forum

As the UK fertility regulator, we make sure fertility clinics and research centres comply with the law. A key element of our work is to provide free, clear, and impartial information about the various types of fertility treatment available at UK clinics.

However, we know that people’s experiences of fertility treatment differ based on their individual circumstances, and it’s crucial that this is considered as part of our work. That’s why we established the Patient Engagement Forum (PEF) in 2021 – to inform what we do, complement our Patient Organisation Stakeholder Group (POSG), and give you a voice.

What is the Patient Engagement Forum?

The Patient Engagement Forum is made up of a pool of people, including patients, partners, surrogates, intended parents, donor-conceived people over the age of 18 and parents of donor-conceived people.

As a member of the Patient Engagement Forum, you’ll get the opportunity to share your views and experiences with us on certain topics, and even get involved creating content or speaking at events, if that’s something you’re interested in.

Over the last two years, our current PEF Members have participated in several activities, including:

• Online focus groups
• Snap polls and surveys
• Blogging for our website
• Providing a patient voice at events

All communication with the Forum is managed by the HFEA Communications Team, with contact made via a dedicated – and HFEA managed – email account only. The Forum does not meet in person.

Any focus groups or interviews organised with the Patient Engagement Forum will be held online or by telephone and may be recorded for the purposes of making an accurate note of the key points raised. Any notes of meetings will not attribute particular views to named individuals.

How does the Patient Engagement Forum work?

Anyone that meets the joining criteria and receives confirmation of their membership, will be added to our PEF contact list.

Depending on your areas of interest, we may contact you with relevant opportunities for you to get involved in. This may include, but is not limited to, taking part in an online survey, telephone research, or webinars.

As a member of the Patient Engagement Forum, we will keep you up to date with relevant opportunities for you to get involved in our work through regular newsletters over email.

Who can join the Patient Engagement Forum?

We’re particularly interested in hearing from underrepresented groups, such as those from the LGBTQ+ community, individuals from ethnic minority backgrounds and those living outside of London, to ensure the views and experiences of all fertility patients in the UK are reflected.

Patients and their partners

Patients and/or their partners, who would like to join the Patient Engagement Forum, need to have undergone fertility treatment in the UK during one of the following time frames:

• Planning to undergo, or considering treatment, in the next three months
• Currently in treatment
• Had treatment in the last two years

These time frames are set to ensure that the experiences and feedback we receive are representative of the current fertility sector.

Donor-conceived people and parents of donor-conceived people

The Patient Engagement Forum is open to as donor-conceived people over the age of 18, as well as parents of donor-conceived people.

Surrogacy

UK surrogates, as well as intended parents, can join the Patient Engagement Forum if their treatment has taken place in the UK in the last two years, or is taking place in the next three months.