Well-designed patient outreach can help tackle misinformation where it does the most harm

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Galina Limorenko
Galina Limorenkohttps://lashuel-lab.epfl.ch/
Galina Limorenko is a doctoral candidate in Neuroscience with a focus on biochemistry and molecular biology of neurodegenerative diseases at EPFL in Switzerland. She actively advocates and implements solutions for equality, neurodiversity and inclusion in sciences. That is when not consumed by reading, or building wooden furniture and toys for her guinea pigs Rick and Morty.

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We live in the age of ‘crap perpetuation’. It is all-immersive in our virtual habitats. It is as insidiously precise in targeting specific audiences as it is varied in its context; a simple recipe for communication success. Then, we also face the lack of easily accessible, credible information resources to counter the misinformation. Blanket fact-spewing and impersonal science communications fail to compete with the misinformation spread, or to have any impact on re-educating the ones who were convinced by “the dark side”.

When it comes to health, online misinformation seeping and spilling over into real life can have detrimental consequences. Case-in-point: the SARS-CoV-2 infodemic. But this issue has long been present in the health science fields, best illustrated by the dangers of peddling bogus alternative treatments instead of approved medical interventions. And the professional, as well as skeptics’, communities have had very limited success in counteracting many claims, as well as almost no success in preventing their rise in the first place. People tend to believe easily-digestible and targeted misinformation and disinformation claims, are less likely to be dissuaded once certain beliefs are adopted, and are less likely to reach out to the sources of credible information due to mistrust, as well as due to their expectation of being ignored, or even ridiculed.

Patient outreach

To address some of these issues, my academic laboratory at EPFL in Switzerland, which investigates the molecular processes of neurodegenerative diseases such as Alzheimer’s and Parkinson’s, also takes part in patient outreach activities. As scientists, we recognise that our duties to society stretch beyond the results of the scientific research. Therefore, we approach the organisation of outreach activities with the same rigor and care as we approach the planning of experiments. Science communication must be done well, or not done at all. Thankfully, participation in such efforts is being increasingly acknowledged as part of the scientific output by the scientific community, academic institutions, as well as by industry employers.

Patient involvement and organised interactions with the academic research community are relatively new concepts for the biomedical research field. They offer us several benefits, such as participation and personalised communications with a specific and defined audience. Patient outreach allows us to disseminate the relevant information at the level of the audience’s knowledge and understanding. It allows us to teach critical thinking skills, scientific method basics, and critical evaluation of the claims. Patient outreach helps to dispel the views of academia as the impenetrable “ivory tower” and recognise the fallibility of science, as of any human endeavour. Together, these efforts contribute to increasing the public’s trust in professional authorities by creating a welcoming environment for high-quality, two-way dialogue between academics and patients.

A scientist working in a laboratory. She is wearing a white labcoat and holding a pipette.

Patient interactions have benefits for the researchers too, and especially trainees. First and foremost, it humanises the basic research. As research scientists, we do not routinely interact with the patients of disorders we study. For a molecular biologist, Parkinson’s is an abstract concept, derived from the peculiar shapes and forms of the pathogenic protein implicated in this condition. Patient interactions remind us that there are human beings at the other end of the pipette, who will benefit only from our best efforts to do excellent science.

Furthermore, patients are the only ones who have continuous access to their condition. As shown throughout history, the inconspicuous details, revealed by scrupulous observation, often lead to major breakthroughs and new avenues of exploration. As we are still learning, Parkinson’s is a multifaceted condition. It is known that non-motor symptoms – such as loss of smell, acting out dreams during sleep, and depression – are prevalent years, and even decades, before the motor symptom onset. Now we also know that body odour changes during early stages of Parkinson’s. And we know it precisely because of listening carefully to the observations and experiences of patients, and their carers. None of these could have been found in the laboratory, but now we can investigate their underlying mechanisms to develop solutions.

How to do it?

Patient outreach activities can take multiple forms. From our experience, high quality events and effective communication efforts include live and virtual seminars and Q-and-A sessions tailored to specific groups of patients, laboratory Open Day visits and interactions with the staff, as well as having dedicated lines of communication with the research staff for specific questions (such as phone, mail, email, online form, chat).

On the other hand, we found other efforts to be less effective and time-consuming, mostly where they involved one-way and out-of-context communications. These include tweeting of factoids, posting links to scientific papers, or even general interest articles without a defined purpose and follow-up engagement. Creation or sharing of non-specific resource databases or webpages, as well as explanations in a highly technical and jargon-laden language, can be especially fruitless and disengaging.

Tips for patient outreach

There are several things to keep in mind when you decide to participate in patient outreach. First, it is important to determine the amount of time and effort your lab is prepared to devote. Quality in this case is more important than quantity – several well-prepared activities per year are perfectly effective.

Second, choosing the type of activities must be based on realistic evaluation of the staff abilities, willingness to participate, and expertise. For example, not everyone is capable of writing and performing a song about the brain synapse loss in Alzheimer’s disease, however many are likely to ace teaching how to load and run the gel for Western blotting, and enjoy doing it too! Often, there is no need to push yourself out of the comfort zone. Stay right in it – exactly where you are the expert, and invite others in.

Third, know your audience and tailor your communication approaches accordingly. For example, if you are reaching out to an older population, bulletin board notices, contacting patient advocacy and support groups, as well as physicians and disease specialists in the hospital take precedence over advertising online.

A group of people sat around a table with laptops and notebooks

In addition, ask what specific topics your audience is interested in learning about. Do not impose the information you think and decide they are interested in, or need to hear. Face tough and provoking questions head on, address it to the best of your expertise, and clearly define the limitations of our collective knowledge of some topics. This is crucial to dispel the promises of magical alternative treatments.

Finally, always show humility and respect for your audience. Although they are not experts in your field, you are likely not an expert in theirs. Most of us will become patients at some point in our lives, and all of us know someone who is a patient. It does not invalidate anyone of being a human before anything else.

In summary

Many – and perhaps, even, most – efforts of scientific and skeptics’ communities to tackle and prevent spread of misinformation suffer from ineffective impersonal approaches; patient outreach is a targeted science communication effort. This direct, two-way communication strategy allows scientists to reach the specific patient communities and their carers and families, provide relevant and actionable knowledge at the level of their understanding, and focus time-limited efforts for the best return. This holds promise to pre-emptively prime communities to detect and be suspicious of unsubstantiated claims regarding alternative treatments, and provides direct communication opportunities in case of a need for clarification.

Whether you are a scientist, concerned citizen or veteran skeptic, it is important to remember that you should not attempt to change the whole world in a single attempt. Do what you can, where you are, with what you have. If enough of us do this, changing the world for the better is just a logical and inevitable outcome.

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