Understanding Covid-19 clinical trial participation from a cultural perspective

With over 500 clinical trials of potential COVID-19 treatments and interventions launched worldwide, encouraging enough people to participate is essential. Yet many clinical studies are struggling to recruit sufficient numbers of volunteers to investigate medications and vaccinations that could potentially offer a treatment or cure for COVID-19.

In collaboration with Havas Lynx Faze, Day One Strategy conducted a survey amongst a nationally representative sample of 1023 people in the UK, powered by Respondi’s access panel, to understand the motivations and barriers to COVID-19 clinical trial participation.

Whilst the results underlined the fear factor preventing people from getting involved, it also revealed higher than expected levels of altruism encouraging people to play a role in tackling the crisis. It revealed stark demographic differences, with more men than women being open to joining in a COVID-19 clinical trial (57% vs. 44%), and the oldest and youngest generations being less likely to want to participate.

Rosie Picton, Co-founder of cultural insights consultancy Axis Mundi talked to Abigail Stuart at Day One Strategy about these findings from a cultural perspective, to understand how the pandemic is shaping our attitudes, beliefs and behaviours. She illuminates how these insights can help pharma companies, governments and institutions recruit more people into COVID-19 clinical trials.

How does Axis Mundi go about understanding the impact of culture on people’s health behaviours?

We start by understanding how a disease or broader health idea is defined in a specific market – is it recent, like COVID-19, or has it been around for longer, for years or even centuries? Once we have that foundational understanding, we explore the individual level, to understand people’s rituals and what they do to mitigate, manage or relieve the condition.

We then take a step outward and explore the role of community in framing the condition culturally.  This includes looking at relationships and familial structures, as well as looking at the impact of health on emotional wellbeing and psychology.

Taking a further step outward, we look to the environment and how this influences people’s way of life.

The last layer of culture we consider is the societal layer, to understand how collective beliefs and public messaging shape how a condition is experienced and understood.

Do you have any advice on how to mitigate the fear factor surrounding COVID-19 trials?  

It is necessary to counter any tendency to refer to ‘participants’ or guinea pigs.  It’s not generally companies or institutions that are doing this, rather we see this within the media, and within broader cultural narratives.

Involvement in clinical trials could be better aligned with other expressions of social good, whether that be mask making, clapping for Key Workers, or local support groups.

For instance, terminology around Key Workers could be leveraged when referring to people who participate in clinical trials. We’re already seeing a renewed appreciation for people working at the front line of COVID-19, and this status should be extended to clinical trial volunteers.

What do you make of the high level of altruism motivating people to enrol in COVID-19 clinical trials?  

The high level of altruism makes sense because right now people feel powerless. Everybody has a personal connection to the health service and people want to give back. The benefit of living in a country where on the whole people are relatively healthy means that we don’t have much interaction with hospitals beyond big life events. But COVID-19 has made it impossible to ignore the pressures on the health services as it is right in front of us.

Participating in a clinical trial is an altruistic act that can be aligned with the other expressions of social good that we are seeing.  As we isolate at home, we want to offer a more tangible form of sacrifice, to convey a sense of compassion for people who are suffering and those caring for them.

How can we make sense of the demographic differences seen in the survey?  

There are many angles around the finding that men are more willing to participate in clinical research than women.  But what struck me is the alignment to the male centricity of medicine. For hundreds of years, diseases have been viewed from the perspective of the male archetype. Yes, men and women respond differently to diseases and treatments for biological reasons, but there are social and psychological reasons as well. The cultural aspect needs to be better recognised and addressed to encourage more balanced participation in clinical research.

It was interesting from a cultural perspective to see that people under 55 are more motivated by financial rewards and desire to protect family members.  Stagnant wages, furloughing and redundancies, rent or mortgage payments have put huge financial pressures on this demographic.

There is an immediacy to those financial pressures that might lead people towards saying that a financial reward would be really important. This age demographic is most likely to be responsible for caring for their children and / or ageing parents and therefore can’t afford to risk their health by enrolling in a clinical trial, due to potentially neglecting their familial duties.

How would you frame communications to encourage people to volunteer for COVID-19 clinical research? 

Scientists and healthcare professionals are coming out of this in a positive light. That is not just from a frontline Key Workers perspective. There is a sense of authenticity in scientists and healthcare professionals that builds trust in them. They don’t make speculative statements; they use the facts to build trust. This contrasts with many politicians who look very uncomfortable right now and may appear to lack accountability.

If the biggest thing that came out of the report was people’s fear over death or illness, then first-hand experiences and communication from people just like you who have already participated in COVID-19 trials will reassure and encourage people to act.

Have you spotted any emergent communication trends arising from the pandemic that companies, governments and institutions could piggyback on?

People are rapidly becoming familiar with new technology in a way that seemed inconceivable a few months ago. I have never received as many WhatsApp video messages and memes from older relatives than since we entered lockdown. It has rapidly become a popular and accessible medium for older generations, in particular, to share information with friends and family and show people that they care. It could be a good opportunity to harness this communication channel to get people involved in spreading the word about participation in COVID-19 clinical trials.

How do we know if cultural shifts such as the mass adoption of new technology are here to stay? 

Many of the cultural changes that we’re witnessing, such as mass migration to remote working, sustainability or even tele-health were already in progress pre-COVID, but they’re being massively accelerated in the face of the pandemic.

To determine which ones will stick I would look for things that have an anchor in theoretical structures, for example the surge in home baking relates in some way to every layer in Maslow’s hierarchy of needs, from the basic need for food to self-actualisation through up-skilling, as well as already being in progress before the pandemic hit.

Rosie highlights her tips to encourage people to enrol in COVID-19 clinical trials:

1. Leverage scientists, healthcare professionals and existing COVID-19 clinical trial volunteers in your communications

2. Reframe clinical trial participants as Key Workers doing essential work on the frontline to help save lives

3. Piggyback on the trend for older generations, in particular, to share information via WhatsApp video messages / memes, to spread the word about COVID-19 trials

4. Harness people’s openness to embrace telemedicine as a way to engage clinical trial volunteers throughout the trial, to share information and provide support

5. Explore opportunities to challenge the dominance of the male perspective in medicine as a way of encouraging more women to enrol in COVID-19 trials

Part of the Cannes Healthcare Agency of the Year 2018, Havas Lynx Faze is a full-service patient recruitment and retention agency focused on working with patients to understand where their trial experience can be improved and using creativity to do it. We get patients.

Axis Mundi combine critical cultural discourse, semiotics and design theory for commercial and social enterprise. We work with a team of regional cultural analysts to investigate how health related issues are recognised, managed and understood across diverse markets. We have participated in a host of domestic and international research studies for global healthcare brands including Merck, Sanofi, GSK and Johnson & Johnson.

Abigail Stuart, Founding Partner at Day One Strategy