Uncovering IBD: communicating chronic diseases

New DealInflammatory bowel diseases, Nanomedicine, NanotherapyLeave a Comment

An important part of the current scientific research is focused on the combat of diseases that nowadays are uncurable. This is the case of New Deal project, in which researchers from different disciplines are working together to develop a treatment for inflammatory bowel disease (IBD).

One way to make people benefit from the outcomes of disease research is to let them know what we are doing at the lab, sharing our knowledge. Generally, communicating science is not an easy task and it is even more challenging in the context of a chronic disease like IBD. Many researchers are used to communicate with each other and have difficulties to speak to other audiences. Moreover, scientists have often been reluctant to communicate their research on diseases, afraid of giving false hopes to patients. However, some patients are eager to know what it is happening to them and their bodies. We believe patients have the right to know how far the cure is what are the chances to improve their quality of life.

Usually, researchers do not have strategies how to communicate disease research to an unspecialized audience or have no time or resources for it. Scienseed is trying to solve this problem. They have developed a complete communication guide for IBD researchers.. As a small teaser, they offer us a list of eight basic hints to consider when communicating IBD research.

1. Understand your audience

When communicating IBD, our audience is not only patients. There are other people involved, like practitioners, policy makers, patient’s families and other researchers working in a similar field. Each group is interested in different aspects of the disease and each one will expect to get different kinds of information.

Researchers need to be flexible enough to prioritize some parts of the information depending on who is listening. For example, while researchers may be more interested in the molecular insights of the disease, practitioners may have concerns about the diagnosis of IBD.

If you want your communication to be successful, you need first to identify what are your audience needs in terms of topics and preferred channels. It is important also to keep in mind that different audiences will have different levels of background knowledge, opinions or socioeconomic level. At the end of the story, the person listening is who determines how you should communicate.

2. Find what patients want to know

As IBD is a long-term illness, patients are constantly looking for new ways to cope with their condition and to improve their quality of life. But what do they need to know to be able to do so? That’s exactly what researchers from Linköping University in Sweden wondered, so they interviewed IBD patients and asked what topics they were interested in. They found that while patients demanded information about treatments, they also needed more knowledge about the anatomy of the human body and its functions so they can better understand their disease. Patients were looking also for dietary advices and for tips on how to explain IBD to their families. Be prepared for questions of a wide range of topics, not only about your specific research!

3. Choose the best channel

Nowadays there are plenty of different sources where patients look up for information about their disease. If you want to reach them, it is important to know which ones they prefer. Research has shown that patients choose their treating specialist as their main source of information, while brochures and the internet are next. Interestingly, unlike other chronic diseases, IBD is the most common immune-mediated disease in young adults, and most teenagers use Internet. Over the last decade, the use of Internet as a source of health information has greatly increased. Due to these reasons, formats like websites or digital infographics and brochures are generally effective to reach IBD patients.

Patients with this disease also use social media as a tool to obtain information and to connect with IBD-related organizations. They create an online community that is also useful for seeking support and offering insights and pieces of advice. In this sense, you can find examples of IBD patients sharing their personal experiences managing the diseases on Instagram in profiles like @chronswarrior, in Twitter (@smlhughes) or different support groups in Facebook. It is a good idea to keep in touch with these platforms if you want to reach patients!

 4. Make sure you don’t give false hope

IBD patients are eager to learn more about their disease, and they may take important decisions for their health and personal life based on what we communicate. Things like which treatment suits best or what they should eat influence the decisions they take. That’s why it is important to be accurate about the impact that the communication of progress or giving a piece of advice will have on the patient.

Language is a powerful tool in this case. Sometimes we use words in papers or articles without being aware of the impact they may have on the person who is reading or listening. For example, some expressions can suggest that we have a high confidence in what we are saying, such as ‘is caused by’ or ‘is due to’. Others, on the other hand, stress the uncertainty, like ‘is related to’. The level of hope or uncertainty we communicate depends on the words we choose, so we need to be careful. You can read more about the importance of language in the guide.

5. But don’t be afraid of uncertainty

Uncertainty is inherent to science, but it can be perceived as a lack of knowledge and credibility by the general public. Therefore, researchers usually avoid it. This is particularly visible in diseases like IBD, as there is still no treatment that can cure it completely, and thus new research about potential therapies and clinical trials are needed. The key is to offer a realistic overview of the levels of uncertainty, and the risks, of every diagnostic or treatment progress. In fact, there are about patient’s benefits from having information regarding their illness. If they have all the knowledge, including the uncertainties, they will be able to take better decisions.

6. Simplify, when possible

In science, there is a word for each concept without any ambiguity, but very often these terms are technical words that are difficult to understand for non-specialized people. Clarity is key for communication, so it is important to remove the jargon as much as we can. You may think that you are losing precision when giving away these exact words, but you are making it easier for people to understand the message. Simplifying isn’t only about removing jargon though. Reducing the number of concepts and finding a proper order to present them also helps to reduce the complexity of the information. And always remember that one picture is worth more than a thousand words, especially when you are treating difficult topics, so use images to help you explaining difficult concepts.

7. Always look for feedback

Years ago, science communication had place mainly in mass media, so there was no chance to get feedback from the audience. Nowadays, the situation is way different: the irruption of the Internet in our lives has brought along new formats like blogs and social media. All of them allow the public to answer to our messages directly, so we can get valuable and immediate feedback from them. With this direct feedback we will know if readers are catching the concepts we are communicating about. We can also check if we are providing the information they expected or if we are missing something important.

8. Mistakes may happen

Finally, even if putting your best effort, something may backfire at some point. If this happens, don’t worry too much! Communicating science is a complex task where you have to deal with issues like the ones we have introduced here and many more. Moreover, when talking about diseases like IBD, we will have to talk to a wide range of different people: it is almost impossible to meet everyone’s expectations and sensibilities. Your responsibility is to minimize these situations and to elaborate contingency plans to solve any difficult situations that may arise. And don’t forget you can always learn from these situations and use them to improve your communication skills, spot the gaps and work on them!

Need more information? You can download the Communication guide here.

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