As a medical writer, it’s easy to get caught up in the nuts and bolts. Accuracy, readability and a clear, concise story (usually revolving around scientific data) are paramount. Of course, the understanding that the patient is at the core of the whole narrative, its reason for being, is never lost; but if you’re reviewing a 90-slide PowerPoint consisting of Kaplan-Meier curves, forest plots and adverse event tables, in reality, at least in my own experience, sometimes it’s hard to see the wood for the trees.

A few years ago I gave a ‘Lunch and Learn’ presentation titled ‘Powerful Patients’ to colleagues. I wanted to talk about people who had been through extraordinarily difficult experiences with their medical conditions, but had also achieved incredible things as patient advocates and role models.

There are two in particular that I still think of often, not necessarily because I’ve been involved in working with a medicine for their particular condition, but due to their achievements and zest for life. If you’ve worked with me before, you can probably guess who they are! Their incredible resolve has kept me going on tough days when that reference pack just isn’t coming together…

I hope that you find their stories as inspiring as I do.

Claire Wineland

Claire was born with cystic fibrosis in Austin, Texas in 1997. A few days after her 13^th birthday, after a routine surgery, she developed septicaemia leading to full lung failure. Given only a 1% chance of survival, she emerged from a medically-induced coma after 16 days.

She would stay in the hospital for three months, during which time she decided to found ‘Claire’s Place Foundation’ to provide support to children and families affected by cystic fibrosis.

Claire would go on to be a prominent voice in the cystic fibrosis community, doing a number of Ted Talks – this one when she was just 14!

She was also part of my personal favourite healthcare communications campaign, Breathless Choir (winner of the Grand Prix in Pharma prize at the Lions Health awards in 2016).

Sadly, following a double lung transplant in 2018, Claire passed away due to complications at the age of 21. Her legacy continues to live on through her foundation. Shortly afterwards she was the subject of a documentary film that is also on YouTube, a tribute to a young person wise beyond their years, who undoubtedly had an enormous amount more to give.

Deborah James

Deborah was diagnosed with Stage IV bowel cancer in 2016, at the age of 35. I first heard of her as a member of the You, Me and the Big C podcast on the BBC, originally with herself, Lauren Mahon and Rachael Bland (who sadly passed away in 2018), discussing their lives with cancer and exploring many issues such as mental health, fertility and chemotherapy. Their informal and welcoming style has given a real community feel for people living with cancer, and the podcast continues to this day.

Deborah has been through an absolute litany of treatments and procedures, as anyone who follows her popular Instagram account, @bowelbabe, will know. She writes for a number of national newspapers and fundraises alongside major UK cancer charities, and has a best selling book, ‘F*** You Cancer’, a self-help guide to living your best life with cancer.

She has also been instrumental in helping bring new treatments to patients in the UK, acting as a case study for NICE submission as part of a clinical trial.

Her resolve and persistence in the face of adversity, still determined to help others, is amazing.

Hope is a powerful theme in healthcare communications, and both of these inspiring people have been determined to tell its story. That shared ideal only reinforces our job as creators to make sure that patients are always the focus of our work, weaving a narrative around the backbone of data to form a whole.

At the time of writing, at the end of November 2021, COVID-19 continues to dominate the headlines, and everyone’s lives. The vaccine booster program continues apace in the UK, with urgency growing following the discovery of a concerning new variant, Omicron. The coming weeks will determine how much of a roadblock this new heavily mutated version of the virus is likely to be.

It’s not always easy to say whether the pandemic era (so far) has gone by in a flash, or felt like forever – it’s realistically a personal feeling determined by all sorts of factors. However, what is indisputable is the unprecedented speed of the development and roll-out of the COVID-19 vaccines.

It’s probably pretty safe to say that most people had never heard of messenger RNA (mRNA) before Pfizer/BioNTech and Moderna were thrust into the limelight in 2020 – in essence, it is genetic material that tells the body how to make proteins. There seems to be a misconception amongst some that this vaccine technology is brand new and developed at breakneck pace; however, mRNA vaccines have a storied history of development.

The question is – is this moment the triumphant culmination of the mRNA story (spoiler: almost certainly not) or an important milestone on the way to further innovation?

First, let’s take a brief look back at the history of mRNA vaccines. The path to success was not direct; for many years, mRNA was considered unsuitable for use as a drug or vaccine, due to its instability and cost. It was discovered in the 1960s, and, in 1978, fatty membrane structures called liposomes were used to transport mRNA into mouse and human cells, to deliver genetic material into cells and induce protein expression – the basis of the technique that would later see code for the COVID ‘spike protein’ delivered via vaccine to spark an immune response.

Investment and scientific innovation by hundreds of researchers in the decades since, including chemically modified RNA and fine-tuning of the liposome delivery system, led to the approvals of the mRNA vaccines currently forming the backbone of the global response to COVID-19.

mRNA vaccines have a number of potential benefits, including the possibility of rapid development and progress into clinical trials, and the capability of adapting to new strains (this may soon be tested by the afore-mentioned Omicron variant – vaccine manufacturers are already claiming that new vaccines might be ready in 100 days if it proves to be resistant to the current jabs).

There is certainly growing confidence that mRNA vaccines could have far-reaching applications in other infectious diseases; not just combating other respiratory viruses, such as influenza, but also malaria (an mRNA vaccine candidate is currently being tested at Oxford’s Jenner Vaccine institute) and HIV – described as being in a ‘fifth decade of a global pandemic’.

Over twenty mRNA-based immunotherapies have entered clinical trials for cancers, with some promising results in solid tumour treatments. Most cancer vaccines are therapeutic rather than prophylactic (with the exception of those for virus-induced malignancies, such as HPV). They must efficiently express tumour antigens and elevate immunity. Early results have demonstrated the potential of mRNA vaccines in treatment of advanced melanoma.

Earlier this month, promising early stage results were reported for an mRNA-based therapeutic for heart failure – patients undergoing coronary artery bypass surgery had an mRNA-encoding vascular endothelial growth factor (VEGF-A) injected into the heart muscle, which is hoped to stimulate the repair and regeneration of the heart. Whilst more research is needed, there is potential for improving patient outcomes for heart failure, a chronic disease where half of patients die within five years of diagnosis.

It’s possible that mRNA technology could be refined still further. Self-amplifying mRNA vaccines encode a ‘replicase’ that enables amplification of the original strand of RNA in the cell, with the aim of much higher protein expression at lower doses. The path to mRNA vaccines has drawn on the work of hundreds of scientists and researchers over many decades. Their perseverance has already changed the course of a global pandemic, saving many lives – but it seems inevitable that there is far, far more to come. With technology that can be adapted at such pace, and with a perhaps unprecedented level of public scrutiny, clear and effective communication about mRNA vaccines and therapies will be vital.

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Anyone who has become a little introspective over the last 18 months can be excused. Many of us have suddenly found ourselves confined to our homes for extended periods, with reduced social interactions and facing down a pandemic with an uncertain timeline ahead. Last year, hope was something to hang on to, but optimism was perhaps harder to find.

“… hope may be understood as… attentional focus on the possibility that the future will be good, characteristically in the face of difficulty. Optimism, on the other hand… expectations that the future will be good (which may be with or without reasons)”¹

Fortunately, with vaccines available and, hopefully, more effective therapeutics on the horizon, the outlook is brighter.

But what of hope in other areas of healthcare?

In medical communications, the concept and/or messaging of ‘giving hope to patients’ is a familiar (and noble) one. Relying on clinical data alone is rarely a path to effectively telling the story of a new drug or treatment’s merits: but everyone in the healthcare and pharmaceutical industry is driven to improve the lives of patients.

Deborah James (broadcaster, author and member of the excellent ‘You, Me and the Big C’ podcast team) often talks about ‘hope and options’ sustaining her as she lives with stage IV bowel cancer.^2,3 Hope can assist patients through the trajectory of illness, from initial diagnosis, through treatment and follow-up.⁴

Hope as a concept, and ‘staying positive’, are common discussion points in clinical care.¹

Charles Snyder, an American psychologist specialising in positive psychology, developed a ‘Hope Theory’. This suggests that there are two inter-related components of hope:¹

• Pathway thinking (Way power)
  • Considering strategies to reach a goal or goals
  • Hopeful people tend to create many pathways to get around possible obstacles
• Agency thinking (Willpower)
  • Being motivated, and feeling able to begin and progress towards goals

There are a variety of methods available to assess hope; the most widely used measure is the Adult Hope Scale, designed to assess hope as a stable characteristic of a person, rather than a fleeting psychological state (you can view the scale here: https://ppc.sas.upenn.edu/sites/default/files/hopescale.pdf).^1,5

Several studies have shown a connection between having a high level of hope and health-promoting behaviours, such as not smoking, regular exercise and health diet. Since these behaviours have been associated with improved outcomes in diseases such as cancer, it is possible that hope itself could ultimately be a predictor of a patient’s journey and outcomes.¹

Various interventions, including teaching of cognitive coping techniques, PRISM (Promoting Resilience in Stress Management) and meaning-centred group psychotherapy have all demonstrated increased hopefulness in patients with cancer.¹

Organisations such as ‘Life’s Door’ aim to empower hope, meaning and quality of life throughout illness, aging, and at the end of life – with a vision of including hope in the physician’s tool box as an essential medical intervention.⁶

We are all familiar with ‘hope’ as a concept – but we might not think of it as an aspect that can have a measurable impact on outcomes for patients, or we might believe that it is an innate characteristic that cannot be changed by external forces. Hope enhancement techniques could be an important tool as part of a holistic treatment plan, and may form an important part of patient support programs. My hope is that we continue to explore the possibilities, bringing hope and optimism to the forefront of healthcare.

1. Long KNG, et al. Global Epidemiology 2020;2:100018. Available at: https://www.sciencedirect.com/science/article/pii/S259011332030002X [Accessed September 2021].
2. The Sun. ‘Options and Hope’: I’ve found new fire after 13^th operation and want to make the most of every day. Available at:  https://www.thesun.co.uk/fabulous/15428147/deborah-james-new-fire-op-make-most-every-day/ [Accessed September 2021].
3. F*** You Cancer: How to face the big C, live your life and still be yourself. Deborah James. Published by Vermilion. 2018.
4. Corn BW, et al. Lancet Oncol 2020;21:e452–59.
5. The Trait Hope Scale. Available at: https://ppc.sas.upenn.edu/sites/default/files/hopescale.pdf [Accessed September 2021].
6. Life’s Door – Who We Are. Available at: https://lifesdoor.org/en/about-us/ [Accessed September 2021].

The challenge is underway to vaccinate people against COVID-19 and we’ve seen great strides made in the UK, with the government pledging that all UK adults will be offered the vaccine by the end of July this year, which could be met even sooner. While we have demonstrated we can meet this huge logistical challenge, the impact of vaccinations will only be effective if we have high uptake rates.

A key barrier to uptake and a major public health concern is vaccine hesitancy. UK research shows high levels of mistrust about vaccines. For example, 14% of people have reported unwillingness to receive a vaccine for COVID-19, whilst 23% were unsure. Reasons for hesitancy include safety concerns, preference for natural immunity, concerns about commercial profiteering and general distrust in the benefit of vaccines[1]. This is likely to be compounded by recent coverage from Europe and beyond, raising doubts around the Oxford vaccine.

The levels of distrust are even higher among ethnic minority groups¹. Growing up in an Indian family I know first-hand the number of times I’ve had to explain to elderly relatives the importance of following the latest scientific evidence in medical care.  Addressing these issues is critical since ethnic minority groups are disproportionately impacted by COVID-19 and many are working on the frontline.

My view is that a major part of vaccine hesitancy is due to these groups hearing misinformation through word of mouth and non-scientifically supported sources. This is driven by cultural factors including strong community interdependence among the older generation. To address this problem I think we need more creative communications which connects in the best possible way with the target audience and inspires change for the better. Putting it simply it’s not what you say but how you say it.

It’s great to see creativity being applied to the challenge in mainstream media. Firstly, last month the UK’s major broadcasters aired a #TakeTheVaccine campaign encouraging ethnic-minority communities to get vaccinated against COVID-19. The video united prominent figures, including Adil Ray, Moeen Ali, Denise Lewis, Romesh Ranganathan, Meera Syal, David Olusoga and Beverley Knight, who address vaccine hesitancy among ethnic-minority communities and debunk myths about the vaccine.

Secondly, we can incorporate more fun and humour into communications. For example, in addition to the comedians featured in the #TakeTheVaccine video, there is the potential for other influencers to deliver impactful communications that can go viral. For example, Dolly Parton who reworked Jolene after receiving the COVID-19 vaccine.

Finally, in addition to the top-down approaches above, we need grassroots campaigning by collaborating with local religious leaders, community groups and influencers who can deliver authentic, empathetic, and trusted messages to a wide audience. This work started last year when Adil Ray created stay-at-home videos tailored for British Asian audiences.

Vaccine hesitancy is not a new issue and we’ve seen the impact on key vaccination programmes such as MMR and HPV. However, if we look beyond boundaries and limitations, we can counter-balance misinformation with creative and relevant content like the #TakeTheVaccine campaign. This cut through the noise and did a great job of building an emotional connection with audiences and has the potential to help change beliefs and, through them, behaviours.

References

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1. Paul E, Steptoe A, Fancourt D. Attitudes towards vaccines and intention to vaccinate against COVID-19: Implications for public health communications. The Lancet Regional Health – Europe. doi: 10.1016/j.lanepe.2020.100012.

In medical communications, when trying to indicate a formal relationship between ourselves and a client or KOL, it’s all too easy to fall into the trap of using pompous words or too many of them. However, using obscure or long words to impress (even unwittingly) usually has the opposite effect.

Your reader is likely to prefer Anglo-Saxon words to Latinate ones, as they are more natural sounding and less pompous.

For example:

‘We will get together at 6pm’ rather than ‘We will congregate at 6pm’ (‘to congregate’ is the Latin version of the Anglo-Saxon ‘to get together’)

However, it’s important to make sure that the structure and grammar are sound so that it’s clear that an educated choice to use Anglo-Saxon words has been made.

Something else that tends to creep in when trying to be formal is using too many words:

‘owing to the fact that’ – can be replaced with ‘because’ or ‘since’

‘had occasion to be’ – can be replaced with ‘was’

‘in this day and age’ or ‘at the present time’ – can be simplified to ‘now’ or ‘today’

or old-fashioned phrases:

amongst – can be replaced with ‘among’

prior to – replaced with ‘before’ and

whilst – replaced with ‘while’

When reading written work or emails through, it’s also worth looking out for obscure/stuffy words and overcomplicated phrases to see if there is a way to express them more elegantly without sounding too casual.

For example:

‘The meeting is scheduled to take place in London on Friday 14 March.’

Could be written as

‘The meeting will be in London on Friday 14 March.’

And

‘For your convenience I have set up an online poll and would be very grateful if you could indicate your interest in attending by completing your availability. Please click here to complete the poll: http://www.onlinepoll.com/pc82m2ypkd3xgwy2.’

Could be written as

‘To assess availability of participants, please complete this poll: http://www.onlinepoll.com/pc82m2ypkd3xgwy2.’

At Makara Health we employ senior medical writers with at least 10 years of writing experience who you can be sure will get the tone right. We also have a structured QC process on everything we write to ensure consistency and clarity. However, regardless of experience, it never hurts to ask yourself – could this be written more simply? Will I say more with less?

2020 is the World Health Organisation’s Year of the Nurse and the Midwife. In med comms it is generally acknowledged that nurses represent an important target audience. Regular contact with a good nurse specialist can make the difference for patients struggling with asthma, arthritis, inflammatory bowel disease and myriad other long-term conditions. Educated, empathetic and driven, there can be no doubt that nurses have a pivotal role to play in patient care.

Why is it then that they are rarely top of the list when it comes to communications strategies? Why do GPs or consultants always seem to trump nurses when it comes to defining the target audiences? While it’s difficult to say for sure, the following reasons may all play a role:

1. Nurses are not the main prescribers. Likely the number one reason and there is certainly a strong rationale for prioritising GPs or consultants. However, nurses increasingly share prescribing responsibilities and, those that don’t, are often trusted advisors to the prescribers themselves. Although they may not always play a key role in diagnosis – nurses are involved in ongoing management and treatment reviews. They are also the ones giving a positive feedback loop to consultants when they see the benefits a new therapeutic option has brought to one of their patients.
2. An unconscious assumption that nurses don’t understand data. I’ve often sat in meetings where a GP or consultant has said something along the lines of “I don’t think nurses are interested in the data” or “I’m not sure nurses will understand that”. Now, while a nursing role does require a focus on clinical delivery, in my experience nurses often relish the opportunity to learn about the data behind a treatment, even if that means giving up their personal time. Developing the right format in which to share data with nurses in a way that is relevant for them is a smart approach and I’ve seen this work well when our clients have consulted with nurses directly and developed bespoke education based on their insights.
3. A belief that nurses are already too busy. Nurses do have heavy workloads, however, they are also passionate about what they do. Like teaching, nursing is a vocation and it never ceases to amaze and impress me how much time nurses are willing to invest in initiatives that they feel will benefit the wider community and improve things for their patients. Working on initiatives with peers can also be a way for nurses to boost their professional development. Seeking nurse input early and being realistic about time commitments is a good way to ensure that this important group of professionals has a stake in a communications strategy. Better to ask than overlook this important HCP audience.

Building strong relationships with nurses can pay dividends for a company’s reputation in the longer term, as several of our clients have seen with their own bespoke educational nurse programmes. Nurses are fantastically well placed to change things at the coal face. A trusted advisor to consultants; a barometer for patient behaviour and trends; a force for change in practice at a local level. If you want to get something done, ask a busy person. If you want to impact patient care, ask a nurse.