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Mistrust in medical research: a patient perspective




It’s Thalidomide all over again



Stop hiding from the mistakes of the past



Increase awareness and understanding




I didn’t realize everything needed to be tested



Educate against fake news

The rise of social media and internet blogs has given us all the tools to easily self-publish content, leading to an environment where click-bait headlines prevail, and individuals are not held accountable for publishing incorrect information.

Fake news can have a dire impact on the uptake of therapies and lead to mistrust in healthcare. Members of the public need to understand which sources are trusted and which are not. This includes educating people about different stages of clinical trials, their purpose, and how to recognize robust data.

People need to be able to put things into context and read beyond the headlines. A good example is a recent incident in the UK that made headline news, where two NHS workers who were among the first to receive the Pfizer/BioNtech vaccine suffered allergic reactions.

The news sparked some panic among patients on social media. However, delving beneath the headlines, we learned that people with a history of severe allergic reactions were excluded from the clinical trial protocol, so it’s unsurprising that we will see some cases as the vaccine rolls out.

Within the trial itself, there was a low rate of allergic reactions among the 18,000 participants[9]. The two people in question already had a history of allergic reactions because they carried Epi-pens.  Those with a history of strong allergic reactions should always speak to their doctors before getting the vaccine. However, allergic reactions can occur with many vaccines, so it is not as much of a red flag as some of the headlines alluded to. If it had been any other vaccine or drug, would it have even been headline news at all?

Create transparency and clarity

Educating the public goes hand in hand with ensuring transparency and clarity. Unclear and incomplete information fosters distrust. For example, the public unease about the lack of available information around Pfizer’s legal indemnity agreement with the UK government for its COVID-19 vaccines and the company’s refusal to offer any details[10].

Even for me, someone who is very knowledgeable about the industry, highly health literate, and very well-informed, this hasn’t sat well. Providing the public with more opportunities to engage with industry professionals would perhaps help with this. The Royal Society of Medicine has been running a series of COVID-19 webinars. Whilst they are “forhealth professionals, by health professionals[11]” I’ve been watching them as a non-HCP and have found them extremely useful, especially as it provides an opportunity to be able to ask questions directly to the experts.*

A patient-centric trial design has the knock-on effect of increased recruitment and retention, which can lead to greater diversity and efficiency

Information that is made available in plain language, digestible lengths, and expanding open access to research papers will help improve healthcare literacy. Under new EU regulations, sponsors will be required to provide a lay summary of clinical trial results[12]. Outside of this, there is also an opportunity for creating lay summaries of other types of publications, including manuscripts, conference abstracts, and posters. With the increased spread of fake news, information from healthcare companies is rising in credibility[13], so sponsors should recognize the importance of providing this information in an understandable and easy-to-process format – not just because they have to, but because it will be beneficial to the industry to have a more informed population[14].

Partner with patients and the public

Improving patient and public involvement (PPI) in clinical trials is another key area that could help to increase trust in the process. Treating patients as activated and valued partners, rather than passive subjects, can increase the success of a trial by making it more relevant and appropriate. The patient will also feel like a partner, improve their perception of a trial.

A patient-centric trial design has the knock-on effect of increased recruitment and retention, which can lead to greater diversity and efficiency. Overall, the process becomes more relevant to a 21st-century diverse population, something that has been recognized by the FDA, which has recently published new guidance for enhancing diversity in clinical trials[15].

In fact, Moderna slowed down recruitment for its COVID-19 vaccine trial specifically to address a shortfall in recruitment from ethnically diverse populations for an illness that has been shown to disproportionately affect people from certain ethnic groups[16].

Unfortunately, PPI has not become such an embedded part of clinical trials and it is not seen as indispensable yet. I’ve heard many industry professionals talk about how the speed at which the COVID-19 situation evolved meant that PPI was pushed to one side, indicating that it’s still considered a “nice to have” rather than an essential part of the process. This needs to change. Patients and the public represent a key group that can help the industry build trust within the wider population, so we need to make the most of this.

Increasing public and patient trust in clinical trials and medical research is a complex issue and one that will not be solved in a single strike. It will require sustained and coordinated efforts from stakeholders everywhere, not just while the time is ripe, but for many years to come. Communication in general and scientific communication specifically in the time of a public health emergency can be extremely powerful. It can make or break the public’s buy-in when it comes to accepting interventions.

*Fishawack Health does not advocate that patients use materials designed for healthcare professionals.


















22nd January 2021



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Blue Latitude Health

+44 203 328 1840

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Blue Latitude Health (UK)
140 Aldersgate Street
United Kingdom

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