Microbiologists don’t need any help when it comes to unpicking health research and evidence. Many of us encounter it on a daily basis, whether first-hand through lab work or through reading journal articles and reviews.
However, the story is different for the wider public. Most will only be able to access information through news stories, social media and websites (e.g. NHSChoices or WebMD), or through visits to the local doctors surgery. What’s more, the untrained eye will struggle to pick out high-quality, robust evidence.
For an emotionally-charged topic like healthcare, it’s important that the public and policymakers are enabled to grapple with health research, especially when the evidence is sparse or difficult to access.
What support should the research sector provide? And how do we keep the public engaged when other factors sway general opinion against the evidence?
These were questions broached in a panel discussion on health research during the UK’s first ever Evidence Week in Parliament (25-28 June 2018). SfAM’s own Clare Taylor (@CT_Microbiol) joined Elaine Williams (@elainew_soton) (National Institute for Health Research) and Juliet Tizzard (@Juliet_Tizzard) (Health Research Authority) to discuss the complexities of funding and regulating research, how it is published, and how to engage the public on important issues.
Getting the word out
Juliet Tizzard set the scene by highlighting how medical research is portrayed in the press. She cited recommendations from the Academy of Medical Sciences (AMS), recently taken up by the Science Media Centre (SMC), for a new labelling system for news stories that indicates the type of evidence cited and whether it has been peer reviewed.
Steps that promote transparency, such as this, are crucial to building trust in heath research. As a regulator of health & social care research and clinical trials, the Health Research Authority focuses heavily on transparency and ethics. Juliet reflected on this point by bringing attention to the patient and public dialogue projects carried out by the HRA.
Value for money
Picking up on the theme of transparency, Elaine Williams pointed out that a significant amount of health research remains unpublished. From the worrying figure that 50% of registered clinical trials never fully publish results, the picture looks worse when the issue of reproducibility is factored in. It is also sometimes unclear whether studies are initially designed with the lessons of previous research projects in mind.
The stakes are particularly high with health research: patients and their family members will desperately want to know the outcomes of clinical trials, so failing to publish is difficult to justify. This is important for major funders of health research, including the NIHR, which must demonstrate responsible use of public money. Elaine highlighted the NIHR’s commitment to add value in research, through efforts including their open access journals library and dissemination centre.
Sometimes, though, research is ubiquitous and the evidence is plain to see, but the public can be hard to convince. Clare Taylor shared public engagement anecdotes, focusing on her Edinburgh Fringe show ‘Anti-vaxxers are anti-social’, where she attempted to engage in conversation with members of the public who mistrust vaccines.
It turned out that people had made up their mind regardless of the science: their views stemmed from a suspicion of Big Pharma. On controversial topics, scientists need to have open conversations to understand why detractors ignore what the science says.
Language was another important factor for Clare. Health research is often reported by tabloids and broadsheets in completely different ways. Scientists have a role to play in influencing the communication of science and its representation in the media.
A question from the audience raised the issue of ‘fake news’ and social media: Clare reflected that individual scientists engaging with ‘trolls’ might not be wise, but rather scientists and organisations should work together to promote the truth as widely, and loudly, as possible.
Too much evidence or not enough?
The panel unanimously agreed that there is “nowhere near” enough health research evidence: the picture is increasingly complex and many questions remain unanswered. We do, however, need to be more transparent in the way that research is designed, published, reviewed and disseminated. As indicated by Clare, regarding communication: “We have a long way to go but hopefully we’re making incremental steps every day”.
Chris Brown, SfAM Policy and Public Affairs Manager