Creating a powerful new weapon in the battle against breast cancer
Judith's diagnosis came in 2010. Following a mastectomy, her sister took her on holiday to India where Judith learnt that the survival rate for breast cancer was only about 50 per cent – in the UK, it is 85 per cent. Also, India has the fastest growing incidence-rate of breast cancer in the world.
This increase has been associated with India's rapid economic development. As the economy booms, more women pursue careers and urban women who work tend to have sex later, have fewer children and breastfeed them less than rural women. They also tend to eat a more Western-style diet, which can lead to obesity. All of these factors are known to increase the risk of breast cancer.
That explains the increase in cases but what is behind the high death figures?
"I'm a living example that if it's caught early enough nobody needs to die," says Judith. "So, I delved a little deeper, and found a whole host of reasons. The biggest problem is cultural. Breast cancer is still a taboo. There is a huge lack of awareness. Women don't know the signs, they don't know how to self-examine.
We were looking for a sustainable strategy that makes breast examination normal – so normal that wives and husbands, mothers and sons, boyfriends and girlfriends could talk about it.
Judith says social marketing can be a powerful new tool in the fight against cancer.
"Social marketing is all about behavioural interventions to benefit the individual and society," she says. "It aligns very well with health and wellbeing, such as stopping someone smoking or driving too fast. For example, if we can cut down how much sugar people in the UK have then the Type 2 diabetes rate, which costs the NHS billions, will decrease. So, social marketing is really important."
The basis of social marketing is understanding why people behave in a certain way. Then it's possible to work out how to influence their way of thinking about an issue and so alter their behaviour.
"When planning an intervention to normalise behaviour patterns, social marketing is the way forward," says Judith.
"But planning for India is complex, with over a billion people in 29 states and cultural protocols that render discussion about the female body and cancer a taboo."
She adds: "Our research showed lack of awareness was a problem, so we were looking for a sustainable strategy that makes breast examination normal – so normal that wives and husbands, mothers and sons, boyfriends and girlfriends could talk about it. We also needed buy-in at every level. Hospitals, schools, universities, and the government – they all had to normalise the message."
Breaking down barriers
At a conference in India, Judith found out first-hand just how huge the challenge of breaking down barriers would be.
"Some Indian women who fitted the demographic agreed to come and talk to me about breast cancer in India," she says. "I'd told them that I had experienced it myself so they knew where I was coming from. I set up a room but nobody turned up. Not one woman."
On returning home to the UK, Judith e-mailed the women individually and asked what had happened. What they said was enlightening.
"They wanted to come, but they didn't want to talk about such a sensitive thing with a stranger," Judith explains. "Others said they had thought about it and decided their husband wouldn't want them to come. I suggested we just have a dialogue by e-mail and they did open up to a degree. Not a lot, but enough to establish that they might talk to their mother or mother-in-law about the issue… but not their husband or son."
However, speaking to medical professionals at an Indian hospital, Judith had a breakthrough. She witnessed whole families coming to a hospital's family wellness clinic as a group. It proved that people were beginning to realise it was okay to get checked out – but who were the women who were making this happen?
Judith identified them as ASHAs (Accredited Social Health Activists) who run the clinics. They are similar to community nurses who go into people's homes and act as the frontline of medicine and healthcare. ASHAs not only have a substantial remit, part of which is about prevention, but they also have the trust of the families, including the men.
As Judith looked further into the matter, she thought about India's strengths and identified that in IT there has been massive investment which has led to people having a broad skills base. Of particular importance, most families in India have mobile phones so Judith looked into the potential of using mobile health (mHealth) technology.
Judith spoke with Diane Carter, Academic Skills Tutor at the University of Portsmouth's Faculty of Cultural and Creative Industries, who agreed to look into designing a new app for the project. The aim would be to give ASHAs a digital device, such as a tablet, that would enable them to access and share information about self-examination and early warning signs. Judith says the aim is for the ASHAs themselves to be involved in creating the app.
So, the next step in this incredible journey is for Judith to return to India to show the ASHAs – and the women they support – a prototype of the app. When work on the app is completed, there will finally be a powerful new weapon that has the potential to change the lives of Indian women in the battle for the prevention (and treatment) of breast cancer.
This app will empower women. It will mean they will now know what they need to do, how they should do it, and where to go for help. That's what I call life-changing.