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08-01-2018 | Patient engagement | View from the clinic | Article

To engage, or not to engage, it’s no longer really a question!

Author:
Louise A Bennett

Why engage… with the public?

As I scientist, I strongly believe that actively engaging with the public is an essential part of our day-to-day scientific life for two reasons. First, a large proportion of science is publicly funded; therefore we, as scientists, have a responsibility to feed back the conclusions of our work to the public, making them easily accessible and understandable, as well as demonstrating how they impact on people's lives. Second, we should aim to inspire the next generation of scientists and healthcare professionals, helping to ensure that the work we start today will be continued and come to fruition. One of the best ways for clinical and basic researchers to do this is to engage with young people, challenging and inspiring them to take on this work in the future.

In general, people who are active in seeking out engagement want something that is new and exciting to learn about, and/or information about something in which they have a particular interest. Engagement where the public are not necessarily looking to be informed is also very important, but can be slightly more challenging. The European League Against Rheumatism (EULAR) 'Don’t Delay, Connect Today' campaign [1] is a good example of this type of engagement, in that they are spreading a message to members of the public who would not normally engage with medical professionals or scientists. This campaign aims to raise the profile of rheumatic and musculoskeletal diseases and highlight the importance of recognizing key symptoms of musculoskeletal disease as widely as possible, which could lead to earlier diagnosis and, therefore, to better treatment outcomes.

It is important to remember that, no matter who we are engaging with, the key to making public engagement successful is ensuring that you have a clear and accessible take home message.

Why engage… with patients?

Working in translational science, we also have a strong conviction that we should be engaging with patients. It is not easy to explain all of the clinical manifestations of a disease during short clinical consultations, especially if the patient is not familiar with their disease pathology or the treatments they have been given. Furthermore, information provided in a formal clinical setting is often directed toward a specific clinical issue (e.g. explaining the rationale and potential side effects of a particular therapy or procedure), leaving little time to explore the wider aspects of the condition. Therefore, there is a need to dedicate time to engaging with patients outside of clinical settings, giving them opportunities to expand their understanding and to ask more wide-ranging questions. In this way, we can help them to make sense of their complex disease and treatments, empowering them to explain this to others in their social circles. Furthermore, patients are generally interested in hearing about research and new developments as this indicates progress and hope, even if this only becomes reality for future generations of patients.

In addition to us engaging with patients, many patients are also keen to instigate engagement with us. We must make patient engagement a two-way conversation, listening to the patients’ unmet needs, concerns, and ideas. Patient and public involvement groups are now recognized as essential in developing our basic and clinical research, from research ideas and contributing to trial design, through to interpretation and dissemination of results. This two-way relationship leads to valuable outcomes for both parties and is rightly a major focus for rheumatology charities and research funders.

Making rheumatology accessible for everyone

Engaging with people who are already interested in science can be a rewarding way to start your own public engagement journey. Utilizing well-publicized science events at local science centers and festivals is often a great way to do this. Similarly, patient groups are another interested and receptive audience. Many patient advisory groups have regular local or regional meetings which welcome talks by clinicians and researchers. These informal and friendly settings are particularly suited to early career researchers wishing to get experience of public engagement. Researchers have a responsibility to make their research understandable to the lay public. We must be able to explain our work and conclusions in an understandable manner, while also making sure people can see how it may benefit them or others in the future. The ultimate aim is to break down barriers so that everyone can understand the basic principles of the science that we are conducting or the clinical messages about disease prevention or early diagnosis.

We’re all in this together

By raising awareness about rheumatic diseases and helping people to better understand these conditions, we can share the message that nobody is fighting musculoskeletal disease alone, but that we are all part of one big team. However, the team and our research can only succeed if we all engage with one another.

Resources

  1. European League Against Rheumatism. Don’t Delay, Connect Today campaign. Available at www.eular.org/what_we_do_dont_delay_connect_today.cfm. [Accessed 12 December 2017].

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