Cancer isn’t fair – but care should be

Patients from minority ethnic groups and cancer experts are working to increase the uptake of genetic testing in communities where language is a barrier.   

Genetic testing in ovarian cancer patients is part of the toolbox that clinicians draw on to support decisions about which treatment will work best for a patient’s cancer. The technique can also identify whether or not a patient was born with a high chance of developing cancer, helping them to take steps to reduce their chance of getting cancer again, and to share the information with family members if they wish.

But there is a lower uptake of genetic testing for ovarian cancer in communities where there are language barriers and a lack of awareness of inherited cancer risks. Cultural attitudes and absence of support for non-English-speaking women can also contribute to the disparities in testing, as Dr Elaine Leung explains:

“Women who do not speak English as their first language often don’t have as much information about genetic testing. It’s really important to look at this because in the context of cancer that really changes survival of patients.”

Leung, from the Sandwell and West Birmingham NHS Trust, co-leads an award-winning project to improve rates of genetic testing with Dr Gabriel Funingana and Professor James Brenton from Cancer Research UK (CRUK) Cambridge Centre and based in the CRUK Cambridge Institute.

The project is called DEMO (for Demonstration of Improvement for Molecular Ovarian Cancer Testing) and was funded by Ovarian Cancer Action as part of its groundbreaking programme to tackle health inequalities for women with ovarian cancer.

The DEMO team knew that 15% of women diagnosed with ovarian cancer in Birmingham are non-white and a significant proportion of these women require interpreting services, particularly among speakers of South Asian languages such as Punjabi, Urdu and Bengali.

The knock-on effects of language barriers can be profound, says Dr Marie-Lyne Alcaraz, a Programme Manager for CRUK Cambridge Centre:

“Access to information for people with cancer is of vital importance. But where there’s a language barrier there’s often a significant gap in awareness and accessibility,” says Alcaraz. “You sometimes see patients carefully tucking papers away, sometimes putting them in a box outside the house ‘out of sight’, and you know that the language barriers are too much for them to absorb the information.”

The DEMO team worked with patient groups representing people from ethnic minorities to identify the barriers and misconceptions around genetic testing. One patient recalls the first project team meeting, saying:

“I felt valued from the outset and listened to, which is key. It was a team effort alongside health professionals who were genuinely interested in communicating more effectively with their patients.”

The team then developed a collection of multilingual resources on the benefits of genetic testing for ovarian cancer patients. These include accessible, freely available online films in Bengali, English, Polish, Punjabi, Romanian and Urdu [see below]

“These films will improve how patients understand the role of genetic testing. The knowledge we’ve built up in this collaboration will help patient diagnosis of ovarian cancer in the UK and also in other countries,” says Funingana:

“Our work [on lifting language barriers] is a step towards a healthcare future where every woman with ovarian cancer benefits from the incredible advances in genomics.”

Dr Kelly Fagan Robinson has worked with some of the most marginalised people in Cambridgeshire to understand their experiences of cancer and attitudes towards risk.

“The current picture of cancer prevention suggests that over a third of the eligible population in England are not currently participating in cancer risk detection measures like population screening programmes,” says Robinson, a medical anthropologist.

To understand some of the reasons why, she spoke to ‘hard-to-reach’ populations during the Elusive Risks project, which she worked on with Drs Maryon McDonald and Ignacia Arteaga at the Department of Social Anthropology.

Their aim was to understand how people make sense of, and navigate, risks in their lives, a theme Robinson continues to work on through her Anthropology By Communities initiatives with ‘less-heard-from’ people.

They discovered a different attitude towards risk and care. “People living one day at a time due to social exclusion, stigma or poverty are frequently focused on immediate needs to ensure survival.

“For the people we spoke to, risk was positive, it meant stepping outside of your typical way of behaving to try to do something new that could make your life better. But care was negative – children being taken into care, experiences of incarceration, being turned away from GP receptions and so on.”

She gives the example of a rough sleeper involved in the project:

“They’d had a persistent cough and had been meaning to go and get it checked because they’d lost their grandmother and mother to cancer but, the night before, their sleeping bag had been set on fire. Their words were: “when your sleeping bag’s on fire, you can’t worry about cancer”.”

For those who live without a permanent residence, maintaining contact with healthcare providers over blood tests and scans is patchy, and can be complicated by other factors.

The team came across one example when they worked with Shaynie Larwood, the Lead Nurse for the Gypsy & Traveller community in Cambridgeshire. Larwood explained that culturally strong traits can sometimes work against people: “self-reliance, importance of family, stoicism, independence, not wanting to be involved with authority… doesn’t stand them in such good stead [when it comes to healthcare].”

Efforts towards closing the cancer care gap should draw on the expertise of ‘super-locals’ like Shaynie, who have first-hand experiences of issues affecting communities, says Robinson:

“They know the ‘hard-to-reach’ people as real people, and understand their concerns. They showed us that people who were invisible in other contexts were in fact easy to reach under the right conditions.”

Realising how important it is to improve engagement between researchers and the people they serve, Robinson developed a course aimed at doing just this.

In a follow-on collaboration between Cambridge and the University of Manchester, she launched ‘Shared Risk’, a bitesize online ‘MOOC’ course aimed at helping researchers and clinicians at the CRUK Cambridge Centre to define and communicate cancer risk better.

Elusive Risks was funded by Cambridge's Early Cancer Institute at the University of Cambridge. Shared Risk is the result of an International Alliance for Early Cancer Detection Skills Exchange and Development award.

The Cancerless project aims to eliminate the significant differences that homeless people experience when accessing health care systems.

Cancer is the second most common cause of death among the homeless population, who experience a doubled rate of cancer mortality compared with adults in the general population in high-income countries.

A number of factors contribute towards this, explains Dr Julia Gawronska, a postdoctoral Research Fellow at Anglia Ruskin University:

“Health is not always the number one priority for those experiencing homelessness. They also encounter barriers when trying to access healthcare systems, which are often highly fragmented.”

To tackle this, Gawronska, coordinates the Cambridge arm of a cross-European project called Cancerless, which aims to improve cancer prevention, rates of screening and early diagnosis among people experiencing homelessness.

Gawronska has been working with the CRUK Cambridge Centre to deliver a series of educational workshops on cancer signs and cancer prevention. The workshops are part of the Health Navigator Intervention developed by the Cancerless team, and include support for signposting to GPs.

Through monthly educational workshops at Wintercomfort, a support hub for homeless individuals in Cambridge, the team has helped raise awareness of symptoms and looked at the barriers to accessing healthcare for people experiencing homelessness.

As the team became more visible and trusted at the hub, they found that not only has workshop attendance increased but, so far, 20% of attendees have since been referred to the Cambridge Access Clinic for further tests, with a 100% follow-up appointment rate.

“It is very rewarding seeing more people engaging in these workshops and taking steps towards improving their health.”

The next step of the Cancerless project is to provide a blueprint for transforming access to screening, services and treatment for people experiencing homelessness in the UK and across Europe, with evidence-based policy recommendations and protocols.

Cancerless is funded by the European Union Horizon 2020 programme.

Feedback from asking people what matters to them is helping to shape the design of the Cambridge Cancer Research Hospital.

Due to open on the Cambridge Biomedical Campus in 2029, the Cambridge Cancer Research Hospital will transform patient care, delivering hope and better health outcomes for people with cancer.

The new hospital brings together clinical expertise at Cambridge University Hospitals with world-class scientists across the University of Cambridge and the CRUK Cambridge Centre. It draws on the Centre’s work involving patients and the public at all stages of research – from advising on strategy, to shaping research and clinical trial proposals, to participating in clinical trials and research studies – and has its own Patient Advisory Group and Network who are using their lived experience of cancer to influence the design and facilities in the new hospital.

As plans for the hospital develop, the project is currently focusing on engaging with communities and individuals who are more likely to experience health inequalities or challenges in accessing healthcare.

Elaine Chapman, Lead Advisory Nurse and co-production lead on the Cambridge Cancer Research Hospital project explains:

“We appreciate that not everyone will want to join groups or be able to attend meetings online, so it’s been important to go out and meet people in their own localities.

“Through proactively building relationships with underserved groups in our region we hope to understand the challenges or barriers they have faced in accessing healthcare.”

“I’ve been learning so much from listening to people who often struggle to be heard. If cancer care is to be equal, we need to understand who is missing from the conversation and why.”

The look and feel of the hospital is important to patients, as the team discovered on a recent visit to Cambridge Central Mosque as part of the Women’s Wellness Day. When asked ‘what would help make visiting Cambridge Cancer Research Hospital comfortable for you?’, the feedback covered everything from the need for a welcoming prayer space to how the new hospital should smell.

“Patients and members of the public have been involved in the hospital planning from the blank paper stage at the very start,” adds Chapman. "Their ideas, feedback and experiences are helping to shape the new hospital to ensure it is the best it can be for anyone who may need to use it when it opens.”

If you are interested in finding out more about the new Cambridge Cancer Research Hospital and patient involvement, please visit Patients | Cambridge Cancer