New NICE guideline released- Have your voice heard!

Everyone at Ovarian Cancer Action is excited to see the new draft NICE guideline ‘Ovarian cancer: identifying and managing familial and genetic risk’ released for consultation.

What does this mean? It means we need your opinions, and this is your chance to have your voice heard!

Go straight to the survey → https://forms.gle/Kb8xf4XfTxuWfGvE8

Below we’ll share some information about NICE guidelines themselves, and how you can get involved.

What is “NICE”?

The National Institute for Health and Care Excellence (NICE) is a body that provides national guidance and advice to improve health and social care in England.

NICE guidelines make evidence-based recommendations, in this case how to identify and manage familial and genetic risk of ovarian cancer. The guidelines are aimed at health care professionals and the public- so it’s important they make sense to you as well as the teams who see patients.

How are NICE guidelines put together?

NICE put together a team who examine all available evidence, which is discussed by a committee made up of experts and patient representatives. The guideline is then shared publicly for organisations like Ovarian Cancer Action to comment on before being finalised. You can read more about the process here.

Is this a new guideline?

The guidance for genetic testing for people with a family history of breast cancer has been in place for some time (you can see this here).

For several years, health professionals and organisations including Ovarian Cancer Action have been campaigning for there to be a guideline for ovarian cancer. Many people don’t realise that ovarian cancer can be linked to hereditary causes, and some of the faulty genes that increase ovarian cancer risk are not linked to breast cancer.

So in essence, this is a brand new guideline that covers hereditary ovarian cancer risk specifically, but some of the guidance is the same as the current processes that are already in place.

So do these guidelines change anything?

Yes, there are some things that will change.

The decision on whether to offer genetic testing is based on working out the chance that the person carries a faulty gene. Previously, this threshold was 10% for everyone. In the new guidelines the threshold depends on the age of the person and whether they are male or female. In some cases, the threshold is down to only 2%. This means more people will be eligible for genetic testing than before.

The guidelines have also detailed that people from certain populations will be eligible for genetic testing, regardless of whether they have a family history of ovarian cancer. This is because these populations have a greater chance of carrying a faulty gene.

These populations are:

Ashkenazi Jewish

Sephardi Jewish

Greenlander

The new guideline also covers in detail additional aspects that should be considered for the at-risk population, including the information that should be provided to people going through genetic testing, the surveillance and risk-reducing surgery that should be offered, and the medications available to reduce cancer risk.

How can I get involved?

Ovarian Cancer Action has been asked to comment on the guidelines, and this is where you come in! We want to make sure we represent the views of the people this guideline affects- you. The only way you can make your voice heard is by sharing your views with an organisation like Ovarian Cancer Action who have registered as a stakeholder.

Everyone is welcome to share their thoughts with us- not only people who have been through genetic testing or have been found to carry a faulty gene. It’s important that the guideline is clear for everyone to understand.

You can share your thoughts on the guideline as a whole, how easy it is to read or how it’s presented, or you can share your thoughts about specific wording or individual recommendations, how they’d impact you or how you think they’d work in practice.

You can find the new guideline and supporting documents here.

To share your views, you can click on this short survey here: https://forms.gle/Kb8xf4XfTxuWfGvE8
The survey will be open until Sunday 22nd October and should only take a few minutes to complete. Anything you tell us will be kept anonymous.

If you would prefer to share your views another way, please get in touch with us on brca@ovarian.org.uk

I am from Scotland/ Northern Ireland/ Wales, can I still comment?

Yes! NICE guidelines may impact practice in all the devolved nations. It’s important your voice is heard!

Will our opinions make a difference?

Yes!

We will put all the things you tell us together and send your feedback to NICE. The committee will then meet next month, discuss all the submissions that have been made by stakeholder organisations, and then make changes based on this feedback.

The final guideline will then be published in March 2024.