Family History Risk 2.0 Study: Advisors Needed

Author: Vicky Woof - PhD Student - April 21, 2022

Research study

FH-RISK 2.0 STUDY

 

Researchers at The Nightingale and The University of Manchester are currently carrying out a project which aims to provide women with an updated breast cancer risk estimate and to explore what they think and feel about if their risk estimates changes. 

Have you previously had your breast cancer risk evaluated, or have you recently had a breast cancer risk re-evaluation?

If so, the researchers are looking for women to join a panel to gain your views and opinions on different aspects of their research study.

 

WHAT IS THE FH-RISK 2.0 STUDY?

First, a bit of background about the FH-Risk 2.0 Study.

Women at Family History Risk and Prevention Clinics are given estimates of future breast cancer risk mainly based on family history, hormone, and lifestyle factors. These estimates can affect healthcare decisions to reduce risk. Doctors are getting better at estimating risk because they’re learning about new factors to add into their calculations. For example, adding information from a woman’s mammogram (breast X-ray) or their DNA. This means that a person’s risk estimate can change.

From 2010 to 2012, as part of the Family History Risk study (FH-Risk), women who attended the Family History Risk and Prevention Clinic at The Nightingale were given their breast cancer risk estimate. However, because the ability to calculate risk has now improved, doctors want to provide these women with a more accurate estimate.

In this new study (FH-Risk 2.0), doctors now want to provide up to 954 women who took part in the FH-Risk study with their updated breast cancer risk estimate. These women will be invited by post to a consultation (face to face/telephone) at The Nightingale.

Another aim of this project is to explore what women think and feel about their risk estimates changing. Up to 30 women who took part in the FH-Risk study will be invited to take part in an interview to discuss their experiences of receiving an updated breast cancer risk estimate. The results will help staff in the Family History Risk and Prevention Clinic when seeing women to talk about their breast cancer risk. The results will also be used to develop information materials and questionnaires to explore the psychological impact of receiving changed risk estimates.

 

BECOMING A FH-RISK 2.0 STUDY ADVISOR

If you were previously given your breast cancer risk or have had your risk re-evaluated, the researchers involved in The FH-Risk 2.0 Study need your help by joining a panel, that will comprise of 6 women.

 

WHY DO THE RESEARCHERS WANT TO ASK YOUR OPINION?

The researchers recognise the importance of involving patients and the public in their research plans. Your opinions and feedback can improve their plans by helping them to gain a better understanding of women’s views, ensure that everyone has the opportunity to take part in this research and how to share the results with the public.

 

WHAT WILL YOU BE ASKED TO DO?

The researchers will ask for your views and opinions on different aspects of their research study including feedback on things like:

  • when and how women should be invited into the research study
  • the study materials, i.e., information sheets and invite letters

You don’t need any special qualifications or experience, and the researchers are looking for women from different backgrounds with varying skills and experiences to offer their opinions and feedback.

 

HOW MUCH TIME WILL YOU BE ASKED TO COMMIT?

You can commit as much or as little time as you like, it is entirely up to you. The researchers will contact you mainly in the planning stage of the interview stage of the research but also near the end of the study.

 

WILL YOU GET TO MEET OTHER FH-RIS STUDY ADVISORS?

If you and other FH-Risk Study Advisors would like to share their views face to face this can be arranged so that you can meet each other in person. These face-to-face meetings will take place either at The Nightingale Centre (Wythenshawe Hospital), at The University of Manchester or a city centre location. The researchers will contact all FH-Risk Study Advisors to find out where everyone would prefer to meet. There will also be opportunities to meet over Zoom.

 

WILL YOU BE PAID EXPENSES?

If you attend any face-to-face meetings, all reasonable travel expenses will be reimbursed including free car parking and light refreshments provided. To thank you and to reimburse you for your time you will receive £25 per hour when attending face to face or Zoom meetings. The researcher present at these meetings will help you claim for this.

 

HOW TO APPLY

If you are interested in being a FH-Risk Study Advisor or have any further questions, please contact Vicky Woof (PhD Student) via email victoria.woof@postgrad.manchester.ac.uk or phone 0161 275 2572 (Mon-Fri, 9am-4pm).