Toolkit for Raising Prostate Cancer Awareness with Black UK Communities

Fact 1:

Our research shows that men who are of Black ethnicity, have a 1 in 4 risk of being diagnosed with prostate cancer.

Asian men have a much lower risk with 1 in 13 men developing prostate cancer (1).

Whilst white men have a 1 in 8 risk. (2)

It is not understood why there is a difference in risk among different ethnic groups but it could be linked to genetics.

Fact 2:

If you are Black and have a father or brother who has had prostate cancer (particularly if their cancer was diagnosed before the age of 60) then you are at even higher risk.

Fact 3:

Black men are also more likely to be diagnosed at a younger age and sometimes with more aggressive (faster growing) disease.

The 1 in 4 lifetime risk was calculated using information about men recorded as ‘Black African’, ‘Black Caribbean’ and ‘Black other’. From hereon we will use the collective term ‘Black men’.

References

1. Lloyd, T. et al. Lifetime risk of being diagnosed with, or dying from, prostate cancer by major ethnic
group in England 2008–2010. BMC Med. 13, 171 (2015).

2. Cancer Research UK. Prostate cancer incidence statistics. (2014). Available at:
http://www.cancerresearchuk.org/cancer-info/cancerstats/types/prostate/incidence/.

Our research in 2020, with a sample group of 300 Black men, found low awareness of ethnicity as a risk factor and that age and family history were better known risk factors. 

• 20% were aware that their ethnicity is a risk factor.  
• 24% were aware that age was a risk factor.  
• 30% were aware that family history was a risk factor.  
• Only 4% knew that all 3 were risk factors. 

We would recommend that any project focusing on risk awareness raising, should gauge awareness levels pre and post campaign and ensure that relevant communication channels are utilised when sharing information.

Health inequalities exist for Black men, older men, and men living in deprived areas. These groups typically experience poorer outcomes and have disparate experiences within the NHS. 

There are also cultural factors that need to be taken into consideration when addressing health inequalities, and so we recommend cultural competency training as well as understanding and recognising how these factors interplay when undertaking awareness raising activities.

Integrated Care Systems have been tasked with planning local services to improve health and reduce inequalities and we will support this work. 

For further information, please contact our Health Inequalities lead. 

In 2022/23, the Direct Enhanced Services (DES) for Primary Care Networks (PCNs) includes a specification on prostate cancer within the Network Contract Directed Enhanced Services (DES) that requires PCNs to:

“ Increase the proactive and opportunistic assessment of patients for a potential prostate cancer diagnosis, in population cohorts where referral rates have not recovered to their pre-pandemic baseline.”

It is recommended that PCNs focus on men who are at most risk of prostate cancer:

• Black men aged over 45
• Those age 50 or older 
• Those with a family history of prostate cancer aged over 45

Information provided on this page can be used to engage your practice population and to consider community engagement.

If you are interested in developing a project in this area, you can contact our Support and Influencing team for direct support.

We also have our Improvements Programme which will help you deepen your knowledge and develop the leadership skills needed to drive improvements within and beyond your prostate cancer services.

Please contact our Education team for more information about the DES. 

Background

We worked with Black stakeholders, including men with lived experience, academics, and clinicians to reach a consensus on the core message for Black men, from Black men, regarding their risk of prostate cancer and the PSA test.

Consensus

1. Because Black men have double the risk of prostate cancer and develop it younger, we strongly recommend they visit their GP for a regular PSA blood test from the age of 45. As a Black man, if you are worried about prostate cancer, you can speak to a GP from any age.

2. Black men with a known family history of prostate, breast or ovarian cancer have the highest risk and should start PSA testing at an earlier age.

We commissioned behavioural science research which showed that people look for information and data that is relatable and relevant to themselves.

Phrases like:
"You are at higher risk of prostate cancer if you are over 50, or over 45 if you’re Black, or your dad or brother has had prostate cancer” was highly memorable and relatable.

People looked for themselves in the list and remembered the data that was relevant to them.

“1 In 4 Black men will be diagnosed with prostate cancer in their lifetime” was shown to be memorable, processable, and people related it to themselves and their loved ones (used language of “I/me/my”).

Our research has shown that people will look for themselves in the message, anchoring facts with personalisation will increase engagement.

An example of this is:
1 in 8 men will get prostate cancer (fact). If you’re Black and over 45 (personalisation) or your dad or brother had it, (personalisation) you’re at even higher risk.

Culturally appropriate materials are important as people need to “see themselves” in pictures, materials and in language / messages.

The same message/image does not work for white and Black audiences, and so it is important that there is a conscious targeting of each audience with distinct messages.

We recommend finding men locally to support the language and images used in poster campaigns, social media campaigns and any case studies for your awareness campaigns.

Behavioural science research commissioned by us went on to highlight that:

The phrase: “1 In 4 Black men will be diagnosed with prostate cancer in their lifetime” should be used in isolation rather than including it with other figures for other ethnicities.
It creates bigger impact and will avoid risk messaging being minimised by other groups.

In contrast, when using big numbers, like, “47,000 diagnosed each year” or scary messaging (‘die’ or ‘affects’) behavioural scientists found that it triggers significant anxiety without gaining benefit in terms of action or attention.

This language was also harder to grasp, anchor and believe. People used distancing language e.g., “that’s sad for them”. Consider a language audit and use of translated materials for your intended audience.

• Bring on board a range of stakeholders to co-create campaign resources and support the planning, deliver and evaluation of a campaign.
• Include your Cancer Alliance, Primary Care Network community / clinical lead, patient participation, local Integrated Care Board (ICB), local charities, as well as support from Prostate Cancer UK. 
• Engaging local charities can be a good way of reaching Black stakeholders.
• Consider the influencing role of women in supporting men, as well as local employers in delivering health and well-being messages. 
• Conduct focus groups to understand barriers with your target population. 
• When discussing barriers to engagement, also gather evidence of experiences of men being refused a PSA test, what, if any, misinformation is "out there", and any delays in diagnosis and treatment, in creating a bespoke intervention package. 
• Gain insights into what method of engagement will work well, what language and images to use and what messaging to share. 
• Your focus groups will begin to build up trust and develop relationships for future engagement. 
• Provide refreshments and food that is culturally appropriate. 
• Commit to developing long term relationships with local communities to overcome any mistrust of “being done to” or “coming to me when you want something”. 

Specifically recruit and train community health champions/trainers from different ethnic backgrounds to support prostate cancer awareness messaging, as developed by BHA in Greater Manchester and Prostate Cancer UK in 2016.

We can provide resources that can be used to support champions/ambassadors who want to start conversations with men about prostate cancer. Contact us for further information about how you can access and use this resource.

You can also book an awareness activity to support your local event. We have a team of trained volunteers throughout the UK who carry out talks to groups both large and small (from a minimum of five people up to 100) and give you the information you need to know about prostate problems.

When engaging with communities, collaborate with your local grassroots charities and ensure the location of events is local and easy for your targeted population to access (e.g. churches, barbers, clubs, community groups) incurring no travel cost for individuals to attend.

In the East Midlands, the Centre for Ethnic Health Research ran a successful ‘Play Domino, Talk Prostate’ event. 

They went on to establish the Domino Club, where Black men attend to play dominoes and talk about prostate cancer in an informal setting.

Unique Improvements (Leeds), is one of the activities for their awareness raising campaign, where trained Black barbers have conversations with their customers, with packs of information provided for them to take away.

Location: we evaluated an awareness campaign that showed Black men remember seeing posters/adverts at bus shelters (37%), GP surgeries (36%) and social media (26%).

Consider newspaper articles promoting events, raising awareness of risk, informing where men can go to for support, sharing our award winning 30-second risk checker and including our Specialist Nurse phone number to provide support for those with questions about their risk, understanding their diagnosis, treatments etc. 

We would recommend developing local “case studies” from focus groups, who will champion the campaign and/or be the face/s of the campaign.

Develop videos/social media messaging with Black men on YouTube, share at events and in newspaper articles, with messaging about prostate cancer risk. 

Engage with local radio stations that have good reach with Black people, to help promote events and raise awareness.

Engage with community leaders to get their support for promoting events within the community.

Our national survey of over 400 GPs in 2017 found that only 51% of GPs knew that ethnicity was a risk factor for prostate cancer.  

The survey also found that GPs were more likely to instigate discussions with men with a known family history of prostate cancer, despite race being another strong indicator of risk. 

Ensure there is “buy in” from primary care, as any campaign will see asymptomatic men wanting to speak to their GP about their risk and potentially wanting to have a PSA test.  

This should be a practice led approach, so all staff in a practice are aware of awareness raising work and so should know how to handle calls and conversations with asymptomatic men.  

Secondary care should be made aware of any potential increases in demand on service. 

We would recommend that the below is shared with GPs, as part of their Continued Professional Development (CPD) in order to make them aware of what national guidance is for a/symptomatic men and what their current responsibilities are for the PCN DES if they are in England.  

• Prostate Cancer Risk Management Programme (PCRMP) PSA guidance for asymptomatic men
• NICE NG12 Suspected cancer: recognition and referral guidelines for men presenting with symptoms that suggest prostate cancer
• Navigating PCRMP and NICE NG12 Guidance on PSA testing
• PCN DES service requirement 4  in relation to increasing the proactive and opportunistic assessment of patients who are most at risk of prostate cancer.  

Organise an education session with GPs on the risk factors of prostate cancer, the PSA test and the changes in the diagnostic pathway.  

We would also recommend developing a cultural competency training session for GPs, to understand the barriers to healthcare that Black men face. 

Cheshire and Merseyside Cancer Alliance ran a project early 2022, to support the reduction of healthcare inequalities experienced by men with African and/or African Caribbean descent age 45+ in Liverpool, which is the most deprived area in Cheshire and Merseyside and with highest Black population.   

The Man in Van project initiated in 2022, with Royal Marsden Cancer Alliance, and is showing the benefits of going out into the community and having life saving conversations with men. 

Wessex Cancer Alliance established a project group that discussed barriers the Black community face when accessing healthcare and developed ways to help raise awareness and reduce those barriers. They worked in partnership with Wessex Voices and Dorset Race Equality Council to deliver a 4 week campaign through social media to raise awareness of prostate cancer in Black men. They also delivered a webinar for primary care professionals to help increase understanding.

If you would like more information about the Cheshire and Merseyside and/or the Wessex Cancer Alliance work, then please view our Health Inequalities Innovation Event May, 2022 event.