Regardless of your political perspective, this campaign was unprecedented. Despite newspaper endorsements, celebrity campaigns, and government official denouncements, Americans elected Donald Trump. A majority of the US public feels the intellectual gatekeepers who used to have significant sway over public opinion are flat wrong.
And we can see that this suspicion exceeds politics. Academic researchers who conduct studies on health and our society must open and democratize the research process, or face the same scrutiny, distrust and suspicion politics do. If they continue on, a large section of the population will assume findings are biased and not applicable, and valuable results may get ignored by the very people the findings are meant to help.
Academics fall into a category called the “informed public,” as defined by the Edelman Trust Barometer. Every aspect of research is controlled and conducted by a small subset of the “informed public.” A small group of people decides what types of studies to fund. An elite group of researchers of top academic institutions runs those studies. The participants often live nearby those centers. A small group of journal editors decides which results get published. So it appears the researchers performing studies on the general public, don’t bother to concern themselves with the interests and issues of the general public.
In 2016, the Trust Barometer recorded the largest gap in trust between the informed public and the population as a whole since the Great Recession. Currently, the US is doubly dubious of its ‘informed public’ compared to the rest of the world –– but the UK isn’t trailing far behind. One glaring example is when it voted to leave the European Union against the advice of the “omniscient” informed public. This gap in trust has the potential to exacerbate the already growing health disparities.
The research world already has a history of trust problems. In the 1960s Tuskegee Study, the US Public Health Authority (now the CDC) let poor African-American men go untreated for Syphilis. The widely publicized scandal spread distrust among the African American community that remains today. Other groups doubt the results of pharma-sponsored clinical trials. They assume studies are conducted, and results analyzed to improve the bottom line –– just as political polling organizations get accused of purposefully distorting analysis to favor one candidate over the other.
There is a solution. Community-based participatory research involves participants as an equal partner in every aspect of the research effort. An individual is more likely to join a study endorsed by their friend down the street than an elite research institution thousands of miles away. They may stay more involved in that study because it is more relevant and culturally appropriate. They may believe the findings of that study because they can personally relate to its’ participants.
The research world has been slow to adapt new techniques to improve efficiency and maintain relevance. The massive tech disruptions in the media, finance and retail sectors haven’t swayed researchers to change tools that create very real efficiencies. Researchers who don’t embrace technology risk being left behind. But changes are coming. Experiment.com is changing the way research studies are funded. ProofPilot is making it far easier for anyone to design research studies. Academia.edu is democratizing academic publishing.
Now, there is a greater risk if scientists don’t change their approach. If human subject researchers don’t take a more open, social approach, populist politicians and their constituents may ignore research findings. They could exacerbate an already difficult funding environment. But, more importantly, it could mean that the exact people research results could help - will ignore them.
Technology disruption in research is long overdue. But, the results of this election should be a wake-up call. The research sector should make changes before it is too late.