Abstract
Online social media networks are an integral part of modern life. Microblogging sites such as Twitter have hundreds of millions of active users globally and have been enthusiastically adopted by many in the medical profession. For advancing a relatively neglected field such as fungal infection, this can be especially advantageous. Education, research networking, case discussions and public and patient engagement can all be greatly enhanced through the use of social media networks. This review highlights the ways in which this can work successfully in the case of aspergillosis and fungal infection in general, as well as highlighting the dangers and pitfalls of social media medicine.
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The Challenge of Aspergillosis
Aspergillosis remains a significant challenge, affecting an estimated 42 per 100,000 of the population globally [1]. Diagnosis and treatment remain a significant challenge, resulting from lack of awareness, lack of access to diagnostics and the diagnostics themselves being limited, which often results in delayed diagnosis. Even when diagnosed, management is not straightforward. The disease itself manifests as a broad spectrum of clinical syndromes, from Chronic Pulmonary Aspergillosis (CPA) to acute and subacute invasive aspergillosis (IA) as well as allergic bronchopulmonary aspergillosis (ABPA) [2]. As a result, management may consist of surveillance alone, antifungal therapy, through to thoracic surgery and even management on an intensive care unit [3]. Consequently, this necessitates a multi-disciplinary approach to management, which may include microbiologists or mycologists, Infectious Diseases physicians, respiratory physicians (pulmonologists), radiologists, and intensive care specialists. Additionally, many of the most severe cases occur in those who are profoundly immune suppressed such as those undergoing haematopoietic stem cell transplantation (HSCT). These patients will be under the primary care of a haemato-oncologist who will be the decision maker in the patient’s treatment.
Multidisciplinary Team (MDT) working is not a new concept in medicine and is the bedrock of a large proportion of clinical practice. However, this usually takes place within a single institution. In recent years there has been an explosion of the use of social media by healthcare professionals worldwide to communicate, which includes case discussion. Additionally, the platform can be used for education, professional networking, advocacy and engagement. This article considers the advantages and pitfalls of using social media as a forum for managing complex infections such as aspergillosis and other mycoses.
Social Media and Infectious Disease Medicine
Social networks and social media have become an integral part of twenty-first century life and culture. One of the foremost networks is Twitter, founded in 2006, which is a free to access and use social media network based on “microblogging”, posting notes known as “tweets” which are limited to 280 characters. This has proved highly popular worldwide with nearly 400 million active users [4]. The infectious disease community, including physicians, pharmacists, nurses, academics and clinicians, have embraced this platform to communicate professionally. In 2015 there were already an estimated 75,000 healthcare practitioners (HCP) using the platform [5]. Since the COVID-19 pandemic, public interest in infectious diseases has never been higher, with an explosion of engagement on Twitter to disseminate news, share journal articles, and discuss every aspect of the pandemic.
Aspergillosis is a neglected disease. Funding for research related to the pathogenesis, diagnosis and management of aspergillosis, and fungal infections in general, is a fraction of that of other infectious diseases [6]. Many laboratories do not have dedicated facilities for diagnosing aspergillosis and have a lack of health personnel specifically trained in the management of fungal diseases, in lower income settings [7]. This makes a readily accessible, free to access, global network of professionals through sites such as Twitter particularly attractive for the management of relatively neglected infections such as aspergillosis.
Twitter can be used in several way to aid the management of aspergillosis—these can be categorised as follows:
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Education
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Research networking
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Case discussions/MDTs
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Public awareness and patient engagement
Education
Aspergillosis and fungal infections in general have historically been poorly covered in medical school curricula [8], resulting in a lack of expertise and knowledge even amongst infection and respiratory specialists. Education and awareness is therefore a fundamental starting point for ultimately providing optimal management for these patients. Twitter provides numerous and unique educational opportunities which have been and can be further exploited to enhance education on aspergillosis. These include;
Journal Clubs
Journal clubs are a long established medical educational tool, which involves a group discussing a journal article relevant to their practice. Twitter can be used to host “virtual journal clubs”, where a paper is discussed online with participants from across the globe. Often the journal authors themselves can participate in the discussion. A dedicated infectious diseases journal club, #IDJClub, was established in late 2019, attracting participation of not only infection specialist doctors but pharmacists, nurses, and other allied health professionals. Mycology topics have been included, and the Twitter account has followers from 114 countries, a global reach which would not be possible with traditional, intra departmental journal clubs [9]. Additionally, a Twitter based discussion forum specifically on mycology topics, run by the Mycosis Study Group (MSG) and known as “OpenMyc”, has been launched.
Tweetorials
“Tweetorial” is a portmanteau of “tweet” and “tutorial”. It is an educational tool which consists of a thread (a series of tweets) which uses concise summaries and visuals to educate about a particular topic. They have become widely used in medical education [10]. Several aspergillosis related tweetorials have proved highly popular [11]. The mix of imaging, question and answer, polls and the open forum, allow for an accessible, time efficient method of education. Another successful example is a review of data on different azole antifungals for the treatment of aspergillosis in a concise, clear format [12].
Additionally, dedicated mycology teaching and courses including on the diagnosis and management of aspergillosis have a presence on Twitter, for example LIFE Worldwide @LifeWorldwide.
Papers and Research Articles
Peer reviewed journal articles remain the bedrock of disseminating research and practice updates in any field, and mycology is no exception. Social media such as Twitter allows this to occur much faster, with the authors themselves posting links to the paper, as well as presenting the data. The open access nature of Twitter allows instant interaction with the authors to ask questions and clarifications in real time, when novel research or clinical guidelines are produced [13]. Beyond research articles, sharing of case reports on Twitter allows for up to the minute surveillance of new trends in fungal infection—for example, some of the first ever clinical reports of what came to be known as Covid Associated Pulmonary Aspergillosis (CAPA), appeared on Twitter, as early as April 2020 [14]. These must be viewed with caution, however, as pre-prints of articles which are not yet peer reviewed and may be flawed can have significant impact when shared on social media.
Professional Networking
The global reach and sheer numbers of Twitter users provides a greater platform than ever before to disseminate information on courses, meetings, clinical networks, and professional societies.
The following medical mycology organisations have a Twitter presence:
Organisation | Twitter handle | Followers (as of 14/03/2023) |
---|---|---|
BSMM British Society for Medical Mycology | @BritSocMedMyc | 1443 |
Mycology Reference Centre Manchester | @MycologyRefManc | 3193 |
MSGERC Mycoses Study Group Education and Research Consortium | @MSG_ERC | 3098 |
ISHAM International Society for Human and Animal Mycology | @ISHAM_Mycology | 3330 |
ECMM European Confederation of Medical Mycology Societies | @eurconfedmedmycol | 2896 |
EFISG ESCMID Fungal Infection Study Group | @EFISG_ESCMID | 1146 |
GAFFI Global Action for Fungal Infections | @gaffi_org | 2121 |
Medical Mycology Society of Nigeria | @MMSNIG | 408 |
Ghana Medical Mycology Society | @GMMS_Ghana | 849 |
They do however lag significantly behind larger infection organisations such as the Infectious Diseases Society of America @IDSAinfo which has nearly 70,000 followers, reflecting the relatively smaller niche mycology continues to occupy in the infectious diseases space.
Encouragingly, mycology societies in lower income settings which historically have had less opportunity and resource to participate in clinical and research efforts to combat aspergillosis, have been able to harness Twitter to network and host events, for example in West Africa, including Medical Mycology Society of Nigeria—@MMSNIG and the Ghana Medical Mycology Society—@GMMS_Ghana. Healthcare professionals and scientist in other regions such as Latin America and the Caribbean [15] and Asia–Pacific, which have also faced challenges in access to mycology diagnostics [16], are able to use this platform to engage with the mycology community worldwide.
Twitter can be used for personal professional development, as it allows the user to keep abreast of courses, meetings, and job opportunities. The site flattens hierarchies – leaders in the field can be accessed directly, whereas at a traditional conference it may be intimidating to approach eminent experts in a hall of thousands of delegates. Research ideas and fruitful collaborations have fertile ground.
Clinical Case Discussion/Virtual Case Conferences
The most direct application of Twitter for direct patient care is clinical case discussion. As previously discussed, the management of aspergillosis is often complex, requiring input from specialists across several disciplines, and critically, review of imaging with a pulmonary radiologist.
Using similar methods to tweetorials or paper discussions, the Twitter platform allows readily accessible information including sharing of images, open to a wide audience globally. This can result in a “virtual MDT”.
The advantages are clear—prompt access to high level of expertise with no geographical limitation. The interactive nature and lack of hierarchical barrier allows for robust discussion of imaging, microbiology results, and the clinical case. This can be especially helpful for those working in more remote settings who may have more limited access to relevant expertise. It allows access to some of the most highly regarded experts in mycology and aspergillosis to provide advice on management. There is even a poll function where participants can vote on management strategies.
This has the potential to be harnessed not only for ad hoc cases, but for formalised regular aspergillosis case conferences, which can be local, regional, or even global.
There are, however, numerous pitfalls and challenges to this which can be summarised as follows.
Patient Confidentiality
Maintenance of patient confidentiality is fundamental to medical practice, even more so on social media, where a breach of confidentiality can result in catastrophic release of confidential information. It is imperative that confidentiality is maintained, patient identifiers removed, patient consent requested and obtained when required, and professional guidelines on social media use by medical professionals are adhered to [17].
Additionally, a clinical governance framework is key. The lack of regulation can have consequences for patient treatment decisions. It should remain clear that the ultimate treatment decision rests with the supervising clinician. Discussions should be recorded in a formal way and participants noted. The open access nature of the site, whilst a strength, also makes this difficult. Moreover, participants may not have the expertise they claim to, as credentials are not verified by the site. The system of “verification” of Twitter accounts has now been overturned and is available to anyone who pays a subscription. This can lead to unqualified persons providing treatment advice, solicited or otherwise. It also must be recognised that despite the popularity of the platform, many experts in fungal infection are not active Twitter users.
Image quality can be an issue when discussing for example CT scans—online images are unlikely to have the definition and clarity of the original images available to radiologists, limiting the usefulness of discussions. Videos can be useful but also may suffer from quality degradation for clinical purposes.
Public Engagement on Aspergillosis and Patient Advocacy
As a relatively neglected disease, patients with aspergillosis often have delayed diagnosis and a difficult treatment course for a disease for which there is poor understanding and awareness. Twitter has an enormous reach well beyond the confines of the medical profession, allowing patient networks and support groups to reach out to each other and provide information, as well as mycology health professionals to engage the public on the topic, raise awareness, and connect with the press, government agencies and research funders. Examples of this include The Aspergillosis Trust @AsperTrust, the Sudan- based mycetoma patients’ group Mycetoma Patients Friends Association @MPFAglobal, and @Crypto_Mag_, which fights for equitable access to antifungal drugs. Awareness events such as World Aspergillosis Day (WAD) has been effectively amplified and publicised on Twitter using the hashtag #WorldAspergillosisDay (or year specific e.g. #WAD2022).
“TROLLS” and Disinformation
As with all interaction with social media, there exists the problem of “trolling”—bad faith accounts whose sole purpose is to agitate, contradict and abuse. This is an increasing problem in medicine with anti-science and anti-medical sentiment becoming a growing issue on online platform, including organised campaigns of disinformation [18]. Even in a relatively less high-profile field as mycology, quality control of content and combatting misinformation is essential if it is to be successfully used for patient benefit.
Conclusions
Social media networks such as Twitter are an integral part of modern life and are here to stay. The potential for it’s use in all fields including mycology and the management of aspergillosis are numerous. The advantages of a global community to tackle this relatively neglected topic in a collaborative way are clear, especially when there are relatively few scientists and clinicians dedicated to addressing the problem.
However, there are numerous pitfalls, in particular governance issues, quality control and verification of participants. The use of social media in medicine is still in its infancy, and structured research on it’s impact remains scarce. It is essential to have a framework of recording data, clear ground rules for use, strict adherence to patient confidentiality, and maintain standards and principles of disseminating peer reviewed data.
Despite its challenges, those who choose not to engage with these platforms are going to find it increasingly difficult to communicate their knowledge to an ever more online world.
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Stone, N.R.H. Social Mycology: Using Social Media Networks in the Management of Aspergillosis and Other Mycoses. Mycopathologia 188, 597–601 (2023). https://doi.org/10.1007/s11046-023-00726-0
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DOI: https://doi.org/10.1007/s11046-023-00726-0