Four surprising patient empowerment discoveries pharma can't ignore

Four surprising patient empowerment discoveries pharma can't ignore

By Associate Planner, Thea McGovern

European Week Against Cancer 2019 is abuzz with talk about #PatientEmpowerment.

And rightly so.

Because what use are cutting-edge diagnostics, personalised medicines and billion dollar clinical trials if, out in the real world, Jim can’t face doing his bowel screening test, Sandra thinks her breast change is OK because it’s not a lump, and Karima declines treatment for lung cancer because she feels it’s a death sentence anyway?

As the Scottish Government’s lead creative agency on the Detect Cancer Early public health programme, we’ve spent the last nine years talking to people about cancer and learning what #PatientEmpowerment means out in the real world. Particularly what empowerment means for people living in areas of high deprivation and with the lowest health literacy – some of the least ‘health empowered’ people in society.

What we discovered is that increasing empowerment requires meeting people on their own terms. And sometimes this means embracing approaches which feel counter-intuitive. Things which shouldn’t have worked. Things which hadn’t been tried. And things which made more than a few health professionals choke on their morning tea.

Four surprising patient empowerment discoveries pharma can't ignore
Still from Leith and The Scottish Government's Cancer campaign

As more and more pharma companies create direct-to-patient campaigns about cancer, here are four surprising things we’ve learned, which challenged our view of #PatientEmpowerment.

1. Feeling empowered can be a dangerous thing

In 2012 we set out to create a campaign that would encourage women aged 45+, in lower socio-economic groups, to see their GP early with any changes to their breasts.

While most cancer charities would sell their granny for the attention and awareness breast cancer gets, we discovered that the ‘fame’ of breast cancer was also a problem. Women felt so sure of and empowered by their knowledge of ‘finding a lump’, that they weren’t taking-in any other symptom information. This, despite diagrams of other symptoms being in constant circulation in breast screening leaflets and charity communications.

Distressingly, we sat through many focus groups where women discussed having nipple discharge, or inverted nipples – and dismissed these as mere oddities, safe in the ‘knowledge’ that they weren’t a lump.

Our challenge was to deliver information about ‘symptoms other than lumps’ in a way that would overcome the fact women already felt knowledgeable and empowered.

The resulting campaign used real photography of other breast cancer symptoms, giving people the language to recognise and talk about these; for example. “skin like orange peel”.

During the campaign period, awareness of the symptoms mentioned in the advert doubled, and women who’d seen the campaign were almost twice as likely to spontaneously mention a symptom from the ad, compared to those who hadn’t seen it.

It feels counter-intuitive, but the breast cancer campaign is a reminder that sometimes it’s people’s feeling that they’re already knowledgeable and empowered that’s the biggest hurdle to overcome.

2. Empowerment is an empty margarine tub

People aged 50-74 in Scotland are sent a home bowel screening test to complete and return by post. But for the best part of a decade, uptake remained frustratingly low, particularly among men in the most deprived areas.

Talking to people about the reasons for this, we realised a key barrier was the palaver of doing the test. In particular, working out how you’re going to catch your faeces without it entering the toilet bowl – and how to dispose of it all afterwards.

As part of a multi-layered campaign, we invested heavily in roadshows in areas of high deprivation. This meant we could have real conversations aimed at empowering people to take the test.

Four surprising patient empowerment discoveries pharma can't ignore

With empty margarine and ice cream tubs as props, we literally talked through how to use them to catch a poo and how to dispose of the tub (and contents) hygienically afterwards.

Pharma marketing is notoriously prone to ‘shiny shiny syndrome’: the desire to do something new and clever with AR, VR, AI, and any number of other ‘new toys’. This campaign is a reminder that when it comes to empowering people with practical skills, a humble margarine tub can be worth a hundred virtual reality experiences.

3. Empowerment means acknowledging the bad stuff

In 2016, we were asked to encourage more eligible young women to think properly about going for their smear test.

Speaking to this audience revealed a deep resentment at messages which sought to frame smear tests as ‘no big deal’. For these women, the idea of showing their private parts to a stranger and having something inserted into their body was horrifying. So, when campaigns tried to pass it off as ‘just another thing to cross off your list’, it suggested a gross lack of understanding and lack of respect for their feelings.

Previous qualitative research had warned against acknowledging these negative feelings. But we questioned this. Testing a range of creative approaches revealed that accepting and acknowledging the audience’s discomfort demonstrated empathy and opened a vital ‘chink in the door’ to a conversation about screening, weighing-up the reality of their emotional discomfort, with the reality of stopping cervical cancer before it starts.

Use of informal language like “fanny” is far removed from normal practice in medical communities, and initially, there were concerns about reinforcing such language. However, strong results have won hearts and minds, and in 2018 the British Medical Association awarded the flower campaign ‘Patient Information Resource of the Year’.

The ‘flower’ campaign is a reminder that sometimes #PatientEmpowerment starts with acknowledging the negative emotions people feel. Because respecting these feelings is sometimes a vital first step to helping people overcome them.

4. Empowerment comes from the strangest things

Throughout Leith’s work on Detect Cancer Early, ‘fear of cancer’ has been a recurring barrier to people taking part in screening and acting early on symptoms.

It’s a particular challenge when speaking to people in the most deprived areas, where cancer incidence, mortality, and late diagnosis are all more prevalent. We regularly speak to people who don’t know a single person who’s survived cancer. In addition, they often carry a heavy lifetime burden of stress and have low feelings of control. For these people, the ‘psychological load’ of facing up to a possible cancer diagnosis can be too much to bear.

In 2018 we were asked to explore how social marketing might help reduce the paralysing impact of fear amongst people aged 45+ in areas of high deprivation. Unsure of the potential for marketing to counter such negative experience of cancer, we tested a wide variety of creative approaches. And we discovered a curious thing.

The message framing that worked most effectively wasn’t about cancer. It was about what it means to ‘be Scottish’.

One of our ideas involved prompting people to reflect on the ‘everyday resilience’ needed to live in Scotland. To survive the Scottish weather. To survive supporting the Scottish football team. If we can survive these challenges, then perhaps we have what it takes to survive the fears and indignities of cancer tests and screenings.

In a light-hearted way, the idea prompted the audience to reflect on a lifetime of strength in the face of adversity, helping to put fears about cancer tests and checks – from the “dreaded squish” of a mammogram, to the indignity of a finger up the backside – into perspective. Not nice. But perhaps not insurmountable.

By moving away from an authoritarian ‘you should’, to an audience-led ‘we can’ framing, the ‘survivors’ campaign unleashed a tsunami of empowering comments on social media. Cancer survivors urged others to overcome their fears, offering themselves as ‘living proof’ of the huge advances in cancer detection and treatment.

Patient empowerment doesn’t always stem from obvious building blocks such as knowledge and skills. When we make the effort to truly meet people on their own terms, we find that empowerment can sometimes come from strange and wonderful places.

To sum up…

Educating and enabling people to improve their health literacy and seek health services appropriately sometimes requires a completely fresh – and often surprising – approach. So, if you need to turn #PatientEmpowerment from a hashtag into reality, have a think about:

  • How ‘feeling empowered’ can sometimes leave people blind to new information.
  • How low-tech often beats high-tech when empowering people with practical skills.
  • How acknowledging ‘bad stuff’ can sometimes be a vital (if counter-intuitive) step towards empowerment.
  • How empowerment can come from strange and wonderful places, when we commit to meeting people on their own terms, and with a truly open mind.
Thea McGovern
Thea McGovern

Thea is a planner. She's currently working from home with a partner, two teenagers, and a groaning internet connection.