Print This PostDisclaimer: This article is my own personal opinion, not that of my employer, funders or the Dementia Researcher organisation.
I’m writing this blog post as the local election results are starting to trickle in, remembering how I felt at a party in Connecticut, USA, in November 2016. I got that feeling on reading that Andrea Jenkyns is the new Reform Elected Mayor of Greater Lincolnshire, and that she has promised a “DOGE Lincolnshire” to cut government waste, and “No to net zero madness.” She has been voted in despite being one of the key proponents of a disastrous Brexit and having no real connection to Lincolnshire. As we’ve stood here and watched our US colleagues lose grants, lose fellowships, have to fire long-term staff and shut down research cohorts, there’s no doubt we’ve felt a bit safer and a bit more secure knowing that our term of government will outlast Trump’s. But we need to be careful. The same discontent that led to his re-election quite rightly continues to grow here, the media is being distracted with the same wedge issues that are everywhere in US media, and Reform continues to talk as friends of working people whilst acting to enrich the wealthy and support extreme right-wing ideologies.
Science has traditionally been seen as an apolitical career; that it is almost incumbent on us to stay away from the fray of politics and ideology, and search for some shining truth. But given the manipulation of facts and the lobbying of special interests involved in current politics, I don’t believe it’s possible for us to stay outside the fray anymore. I’m not saying that scientists can do the work and change the country all alone – a lot of the work needed to do that is out of our hands. The Labour government luckily still have years to turn around their fiscal policies and try to repair some of the damage that austerity has done to our critical institutions and infrastructure. (Whether I’m hopeful that they’re travelling in the right direction is a conference chat to be had after at least one glass of wine). What I would like to focus on today is the things we can do now to protect the organisations we believe in, to help people view us as part of their communities and not as part of an unreachable elite, and to build a research endeavor that everyone in the country wants to protect.
Research Engagement all the time, everywhere – Research engagement is one of the most valuable, and luckily most enjoyable parts of a career as a researcher. I’m not sure I’d ever met a research scientist before I started my undergraduate medical school interviews, I had no idea what one did, and thus it would have been really easy to hear that someone was studying Alzheimer’s Disease with sleepy flies, and think that that sounds like a silly waste of money.
It is a crucial part of our job to reach out to non-scientists and talk about why we do what we do in the way that we do it, and how that might ultimately lead to developments in treatments.
Doing this successfully not only increases public confidence in research funding, but also goes some ways to humanize the scientist. If someone has watched you patiently spend 20 minutes trying to help their very enthusiastic five year old make a mosquito out of pipe cleaners, while having an informative conversation with them about dementia research, they are much more likely to see you as a real person who is motivated to solve a serious problem, and thinking carefully about the way to do it. This may seem trivial, but it is really important. So volunteer for Pint of Science, Science in the Park, visiting care homes, schools, and patient groups. And when you get there, don’t overblow the science. Because that leads to suggestion 2…
Help people to understand uncertainty – One of the major divides between our politicians is the way that they communicate uncertainty. Labour seem to be handling this by always taking the worst possible outcome, and communicating that as their baseline as they deal with an impossibly unstable global outlook. Reform do the opposite – everything is crystal clear, black and white, it’s the fault of this thing or that thing, no grey areas whatsoever. Somewhere in the middle is the region we should be aiming for. But uncertainty is difficult, and probability can be easy to misconstrue. Luckily, scientists are used to thinking about uncertainty every day, and when we communicate with the public, we can get this across really well. Examples can be really important here. When talking about cognitive resilience in dementia for example, and that amyloid pathology doesn’t necessarily lead to memory problems, I use the example of smoking. We all accept at this point that smoking causes cancer, but not everyone who smokes develops the disease.
Helping people understand uncertainty in accessible ways can go a huge distance towards combatting Facebook misinformation and treat anyone who offers guaranteed solutions to complex problems with distrust.
Get off the internet – Wherever possible, try to interact with people as much as you can in real life. While the internet can help connect people, it also acts as an echo chamber, and discussions will rapidly get more polarized and more aggressive than they would face to face. I am part of a local active transport group, and the Oxford LTN wars have made a lot of people very unhappy. We were very nervous to hold in-person public meetings because of the rhetoric online, but have universally found that when talking face-to-face, both sides of the argument care deeply about their communities and the effect of infrastructure changes on them. When you can look someone in the eye and give them significant time, it is easier to have level headed conversations about solutions, that are not laden with dog whistle statements, anger and abuse. After all, scientists are also underpaid hard-workers, who love what we do but also really wish that our childcare was more affordable and that we didn’t have to spend hours on the phone at 8am on Monday morning to get a GP appointment for a condition that will probably turn out to be “stress”.
Act local – If you still have energy at the end of an exhausting day and want to do more politically, then there is significant evidence that acting locally is more effective in community building and achieving goals, then trying to act on a wider level. Look for local mutual aid groups, local environmental groups, and if nothing exists, set something up. It only takes 4 or 5 dedicated people to make local differences that can be meaningful to lots of people. I don’t have a fixed political affiliation, I’ve voted three different colours since coming back to the UK, but I’ve helped deliver leaflets for an excellent local Lib Dem candidate, and have worked with the local authority on road safety improvements around our local schools. If you have data analysis and visualization skills, these are always in demand for local organisations, and our grant writing abilities can also be put to good use. This work is super rewarding, especially when you meet motivated people with similar beliefs that you get to stay friends with afterwards J
Co-design research – I’ve left this suggestion till last as it’s a little aside from the others, but it may be the most important point of all.
If members of the public and our local communities help co-design our research, then they will help stand up for it when a “DOGE” might eventually come for us.
We already know that co-design helps build stronger, more diverse clinical cohorts. There are lots of people thinking at the moment how to build the same level of interaction into more basic biology studies such as the ones that I do in my lab. We’re holding an event in Oxford this summer with some of our wonderful engaged supporters to hear their opinions on co-designing molecular research, and I’ll share the major outcomes from this meeting at a later blog post. The more people feel involved in what we do, the more they will shout if future governments try to shut us down. The UK is home to UK Biobank, to the COVID Recovery Trial and the still absolutely worth the hassle NHS. We all need to protect it.
Dr Becky Carlyle
Author
Dr Becky Carlyle is an Alzheimer’s Research UK Senior Research Fellow at University of Oxford, and has previously worked in the USA. Becky writes about her experiences of starting up a research lab and progressing into a more senior research role. Becky’s research uses mass-spectrometry to quantify thousands of proteins in the brains and biofluids of people with dementia. Her lab is working on various projects, including work to compare brain tissue from people with dementia from Alzheimer’s Disease, to tissue from people who have similar levels of Alzheimer’s Disease pathology but no memory problems. Becky is also a mum, she runs, drinks herbal tea’s and reads lots of books.
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