Beyond the pandemic: Building collaborative media engagement for clinical research

During the last 12 months, conversations in India about clinical trials emerged from the closed doors of sites, sponsors and CROs into the homes of people. Suddenly clinical trials had become a household term. The pandemic had achieved what the clinical research fraternity had been challenged with for years – that of mainstreaming conversations around clinical trials. Is this then the big opportunity for the clinical research industry and, if so, how do we maximise the opportunity to further trust and confidence in the role and relevance of clinical trials beyond the pandemic? How do we continue to keep conversations going about the role of clinical trials in drug development and the fact that no new treatment is possible without the rigour of a clinical trial? In order to do this, it is necessary perhaps to step back a couple of years, while also looking at what we saw emerge during the last year.

At the start of the pandemic, we had just about come out of a few years of negative, controversial, occasionally sensational, and occasionally misinformed reporting on clinical trials in India. Much of the discussion of clinical research spokespersons with the media was around demystifying clinical trials and providing an opinion on the new and amended rules and regulations that were coming into play.

Further, while there are some excellent science and healthcare journalists in the country, as some journalists have shared, we did not, and still do not, have a strong culture of science journalism in the country. Although the experienced science and healthcare journalists often act as a sounding board for many other journalists and provide guidance and counsel, I would imagine that during the pandemic, they themselves would have been incredibly busy.

It was against this background that we had the COVID-19 pandemic. Information was flying fast and furious and from various quarters. It was just as important for the media to take cognisance of what was happening at a global level as much as at a local level. It was extremely challenging and as one journalist admitted, “…there was too much science, and how does one decide whose science is more credible?”

Linked closely to this “infodemic” was also the issue of “trusted sources.” Some of the traditionally trusted sources were ones whose authority and credibility were being questioned. Articles and statements were being retracted; allegations were being levelled at one other, and “we were moving headlessly,” according to a journalist who spoke out regarding the topic.

It was in this environment, faced with the additional challenge of having to report on a pandemic at a pace of development never seen before and which everyone was still grappling with the understanding of, that the media was positioned, tasked with communicating to the public at large that needed facts and information, not conjecture and hypothesis.

On the other end, the biggest challenge for organisations such as CROs, pharma companies and government agencies, was the message. “Organisations found a good way to deviate from meaningful responses and share points that were extremely sanitised,” said yet another journalist. But I believe for organisations too, it was not easy to make sense of how much to communicate in a pandemic that was of public interest but in an industry that was highly regulated as well as jargonised…and in an online environment where conjectures and opinions were shared even before official announcements and statements. Clinical research lexicon was finding its way into mainstream discussions, whether it was placebo trials or serious adverse events or efficacy or informed consent, but at the same time, organisations such as those referred to above had to be guarded, driven as they were by a commitment to patient-centricity, confidentiality and protection, and regulatory guidelines.

So where do we go from here and what are some of the learnings we can take from the pandemic to sustain productive discussions around clinical trials and ensure greater awareness and acceptance amongst the general public?

• Create a council of trusted and credible medical and science spokespersons for clinical research. The pandemic has highlighted one of the biggest challenges that the media faced in finding credible, science-driven voices who could not just demystify, but also provide perspectives on clinical research developments. In the absence of a readily available pool, most media turned to a source easily available – Twitter. But on Twitter, everyone has an opinion on COVID-19 and it was not easy initially for journalists to navigate through the multitude of emerging voices and the algorithms of social media to find a credible one. If we are to “lead with science” as we have often heard being said during the pandemic, it behoves the industry to set up a team of experts available and accessible for the media. A team that can provide a credible, objective, and medical as well as a science-based viewpoint on all things clinical research. This need is even more important given Edelman’s recent Trust Barometer 2021 findings for India where, “increasing my science literacy” has emerged as one of the top five priorities that has gained in importance for the general public over the last year, coming in just after “prioritising my family and their needs.”
• Keep the information flowing and encourage dialogue. We have come a long way in the last year and it is in the interest of the industry to build on the base that has been created through regular, open and “meaningful” (reference journalist comment earlier) communication with the media. This could range in initiatives from just informal conversations to demystification workshops.
• Adopt a posture of openness, transparency, and collaboration to build trust. As a journalist said, “to gain the trust of people, the industry needs the media and for the media to relay the right messages, we have to trust the industry.” We are, already faced with a decline in trust across organisations according to the Edelman Trust Barometer referred earlier. Trust is a twoway street, or maybe three-way if we include the general public. We need to find collaborative pathways, working in partnership with each other to plug the gaps and prevent further erosion of trust.

At the end of the day, clinical trials reportage should not be about who gets the story first but how all stakeholders, media included, can work together to ensure that the public at large is better informed and aware and that those who participate in a clinical trial are recognised for their contribution to the advancement of healthcare. And, most of all, we should lead with science.

(Note: The article is based in part on feedback from journalists)