It has long been recognised that social media can be ‘a lifeline’ for rare disease patients, but what of the benefit for healthcare professionals (HCPs)? People tend to think that there are few HCPs who show interest in rare diseases online. However, having run numerous research projects in this area we know that many HCPs contribute to the online conversation about rare disease.
This is in part because the Internet is a powerful tool for HCPs, as well as patients and their families, to share and look for more information on rare diseases. HCPs have leveraged social media as a platform to have discussions around rare diseases during the COVID-19 pandemic.
In an attempt to increase awareness offline of rare diseases, in 2019, the National Health Commission in China released the report, First National List of Rare Diseases, which contains a list of 121 rare diseases. In this article, we focus on how HCPs across the globe have discussed these diseases online during June and July, 2020. We analysed their social media posts when they explicitly mentioned any of the 121 rare diseases, using its full English name as listed in the Chinese report.
1. HCPs participate in online conversations on the awareness days
Within the date range, the overall conversation fluctuated until the middle of July. HCPs joined the online discussions actively when there were global events and regularly engaged in peer conversations.
At the beginning of June, Scott Perry, a US epileptologist shared a tweet about the latest treatment in the Dravet Syndrome Awareness Month. Perry devotes time and effort in the improvement of treatment for Dravet Syndrome and works closely with the Dravet Syndrome Foundation.
June is #Dravet Syndrome Awareness month 💜
This podcast is from last year, but still has some relevant info. Exciting times with multiple new therapies‼️
Breaking New Ground in Dravet Syndrome Treatment | The Arcuate – Neuroscience News https://t.co/PJQZhq0CbC
— The Notorious EEG (M. Scott Perry MD) (@TheNotoriousEEG) June 2, 2020
Here is yet another exciting advance in treatment of #Dravet. One of several drugs identified as candidate drugs in a #zebrafish model from @BarabanLab – another outstanding step towards better treatment! https://t.co/oiI0jA2Mn8
— The Notorious EEG (M. Scott Perry MD) (@TheNotoriousEEG) July 30, 2020
Within another peak in the conversation, International Albinism Awareness Day, Folakemi Cole-Adeife, a Nigerian dermatologist, drew attention to albinism in public by using the hashtag #MadeToShine.
Today is #InternationalAlbinismAwarenessDay
Please support and do not stigmatise people with #albinism
They are #MadeToShine 💫💛 pic.twitter.com/bVz55ndefW
— Olufolakemi Cole-Adeife FMCP (@flakydancindoc) June 13, 2020
On 23 June, HCPs were excited to see the improvement of clinical treatment in Marfan Syndrome. This post, tweeted by European Society of Cardiology Journals, has been retweeted by 45 HCPs. Their responses ranged from “Wow. Clear benefit!” from an Australian cardiologist to “Interesting data.” from a cardiologist in Northern Ireland.
Wow. Clear benefit! https://t.co/Hsms50Ltpl
— Kaz Negishi@Cardiologist/ Heart Mafia (@kaznegishi) June 23, 2020
2. HCPs appreciate enlightening tutorials on Twitter
In another peak in HCP online conversation, Avraham Z. Cooper, a US pulmonologist, started a lively Twitter tutorial about the correlation between Wilson disease and Kayser-Fleischer rings, in which the Tweet thread has been retweeted over 1,000 times. Many HCPs commented that they enjoyed this online conversation with some saying they’re big fans of #Tweetorials.
Same the history adds a lot! I'm a huge fan of #Tweetorials – always some cool new clinical pearl to learn
— Justin Owens, DO (@JustinOwensDO) July 18, 2020
#Tweetorials and Twitter chats are conversations on Twitter which give the opportunity for discussions on specific healthcare topics, often facilitated by a hashtag. This is something that HCPs regularly take part in.
3. HCPs rely on the wisdom of their global peers
As we looked into more than 3,000 global HCP posts on social media platforms such as Twitter and Sermo, we have identified the top 15 rare diseases mentioned by HCPs online, from the 121 rare diseases listed in the Chinese National Health Commission report.
The most discussed rare diseases by HCPs online were Multiple Sclerosis (18% of all rare disease mentions), Albinism (10%) and Hepatolenticular Degeneration (8%).
Rare diseases are in essence not common, and it can be difficult for new patients to be treated or even diagnosed. Also, it is unrealistic for a doctor to be familiar with every one of the thousands of rare conditions. Social media, however, gives HCPs the opportunity to learn from their peers who have more experience in a niche area.
One example of this is when Ketan Jhunjhunwala, a neurologist from South Carolina, USA, asked a question about the risk of progression for a hypothetical patient with Multiple Sclerosis. Within a day he had received a response.
If there is a 32 old female diagnosed with Multiple Sclerosis with one episode of optic neuritis and three t2 flair lesions on interferons for one year, what is the risk of progression? #MedTwitter #EvidenceBasedPrognosis #NeuroPrognosis
— Ketan Jhunjhunwala, MD PhD (@KetanJhunjhunwa) June 17, 2020
Aaron Cohen-Gadol, the Professor of Neurological Surgery at the Indiana University’s School of Medicine, runs a regular Twitter chat, #NeuroanatomyChallenge, to help support peer learning in an engaging way.
Good job to all those that correctly guessed multiple sclerosis for yesterday’s #neuroradiology challenge. The ddx for the hyperintense lesions pictured here includes both MS and neuromyelitis optica.https://t.co/ufYk1wXdjO pic.twitter.com/cwIGcbGwfF
— Neurosurgical Atlas (@AaronCohenGadol) July 12, 2020
Another good example of HCPs sharing their learnings and the power of the Internet, can be seen by following the work of Dr. Lisa Sanders. She has written on rare disease cases for the New York Times since 2002 and still regularly shares her posts with her online followers on Twitter. Her ‘detective’ approach led to the creation of the US series ‘House’ and a recent Netflix documentary called Diagnosis in 2019.
4. HCPs connect with peers through focused sub-communities
To understand whether this level of conversation was consistent across different countries we looked at the six most mentioned rare diseases in the countries with the most overall conversation.
When comparing the HCP conversation across different countries, HCPs in Spain were most likely to be discussing Multiple Sclerosis, with 59% of their posts related to this rare disease, whereas 90% of HCP posts in Nigeria were about Albinism. An example from this conversation was when Dr. Abiye Kaiaiwo responded to Folakemi Cole-Adeife, providing information about the Albino Foundation to support a patient with Albinism.
Okay. I will send you the number of the coordinator of the Lagos Albinism Awareness society.
I'm quite sure they are in touch with the Albino Foundation already but TAF doesnt provide free surgeries in Lagos yet. And there's no interstate travel for now.
— Olufolakemi Cole-Adeife FMCP (@flakydancindoc) June 11, 2020
As for HCPs in the UK, the US and Canada, we saw an interesting trend where HCPs were building a community to show and tell their rare disease observations by using hashtag #ispywithmymicroscopiceye. Swikrity Baskota, a US cytologist, hosted an event in which HCPs were encouraged to join with their discovery under the microscopic eye. Kashif Mohammed presented 2 images of hyaline-vascular Castleman disease and a HCP commented “ Great case!”.
Follocular dendritic cell sarcoma
– May Arise in a setting of hyaline-vascular Castleman disease.
Uncommon in children.
Spindle to pleomorphic cells, pseudoinclusions
Positive for CD21, 23 , FASCIN
Negative for cd45, cd34, hmb45#ispywithmymicroscopiceye pic.twitter.com/ju2VgzXQEF
— Kashif M M, MD, DipRCPath (@Kashifhazim) July 18, 2020
In all, this article intends to shed light on the online conversation of HCPs with regards to rare diseases. As there are more than 6,000 rare diseases, we need to gather together and support one another. As Amir Hoveidael highlights, the influence of social media is not only beneficial for Multiple Sclerosis patients to take advantage of, but also is a tool for education as HCPs and their peers share case studies on rare diseases which others may find useful for treatment and diagnosis.
Our recent article entitled "The Impact of Social Media Use on Depression in Multiple Sclerosis Patients" is now available on PubMed:https://t.co/JbCHGbo9i5
The findings may be interesting for you.#Depression #Health_Policy #Social_Media #MShttps://t.co/TwBn3xdsuJ@springerpub https://t.co/Sk0DMa1TII
— Amir Human Hoveidaei, MD HMBA (@AH_Hoveidaei) June 24, 2020
A challenge remains as thousands of patients are in need of the right diagnosis. The potential of the Internet can allow HCPs and patients to raise awareness and build trusted communities to help each other to overcome these challenges.
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