Twitter at the ACR 2015 Meeting in San Francisco

There were four abstracts, posters or talks on Twitter at the ACR 2015 Meeting in San Francisco.

Christopher Collins and colleagues reported about: “#Rheumjc: Development, Implementation and Analysis of an International Twitter-Based Rheumatology Journal Club”. In results we read: “A qualitative content analysis (inter-rater agreement alpha =0.801) revealed that the majority of the conversation was relevant with 28% of the tweets addressing the article directly (in the spirit of a “traditional” journal club) and another 62% considered “on-topic” with tweets referencing personal experiences, opinions, and links to supporting literature.” Conclusion: “#RheumJC is a novel and popular approach to the traditional medical journal club which brings together people from around the globe and across specialties to discuss current medical literature in rheumatology utilizing Twitter as a medium for medical education.” I hope that #Rheumjc will continue and that even more participants will show up.

Ahmed Omar an colleagues looked at: “Twitter and Rheumatology: Significant and Incremental Growth in Usage“.The authors used the Symplur® healthcare analytics website to retrospectively examine traffic related to chosen Rheumatology-associated hashtags as #Rheum, #Lupus, #Fibro, #Arthritis, #Osteoporosis, #Spondylitis (AS), #RheumatoidArthritis, and #Vasculitis; and also #Diabetes, #IBD  (Inflammatory Bowel Disease), and #Psoriasis. The concluded: “Twitter usage in relation to Rheumatology has shown a dramatic growth over the last 5 years and continues to show sustained growth.” In 2014 tweets on rheumatology have hit the 500,000 mark.

To give comparable data on the 500,000 mark I consulted the Symplur® healthcare analytics website myself. Tweets using the ACR meeting’s hashtag #ACR15 amounted to about 6,179 for the peak days (08.-10. Nov. 2015). That’s nearly double of the EULAR Meeting’s hashtag #EULAR2015, where tweets amounted to 3,877 for the peak days (10.-12. June 2015)

Pari Delir Haghighi and colleagues reperted an "Investigation of Environmental Associations of Fibromyalgia Pain Using Twitter Content Analysis”. In methods they write: “We performed an automated search of Twitter between January 2008 and November 2014 using the hashtags #fibromyalgia, #fibro and #spoonie as keywords.” I’ll discuss this study together with other studies on fibromyalgia. No one would have thought a couple of years ago that tweets can be used scientifically.

Jonathan S. Hausmann and colleagues looked at: “Use of Social Media By Rheumatology Fellows in North America“. On Twitter we read in onclusion: “Twitter, for either personal or professional use, was reported by 18% of fellows, significantly less than surveys of adults with a college education, where the rates of use are 30%.”

Take home messages:

    - we can use Twitter to discuss new developments in medicine on a global level

    - Twitter may yield data for scientific research

    - Twitter has shown an incremental growth in rheumatology related hashtags

References:

Collins C, Sufka P, Hausmann JS, Jayatilleke A, Campos J, Bhana S. #Rheumjc: Development, Implementation and Analysis of an International Twitter-Based Rheumatology Journal Club [abstract]. Arthritis Rheumatol. 2015; 67 (suppl 10). http://acrabstracts.org/abstract/rheumjc-development-implementation-and-analysis-of-an-international-twitter-based-rheumatology-journal-club/. Accessed November 12, 2015.

Omar A, Sari I, Chan J, Haroon N, Inman RD. Twitter and Rheumatology: Significant and Incremental Growth in Usage [abstract]. Arthritis Rheumatol. 2015; 67 (suppl 10). http://acrabstracts.org/abstract/twitter-and-rheumatology-significant-and-incremental-growth-in-usage/. Accessed November 12, 2015.

Delir Haghighi P, Kang YB, Huynh T, Buchbinder R, Burstein F, Whittle S. Investigation of Environmental Associations of Fibromyalgia Pain Using Twitter Content Analysis [abstract]. Arthritis Rheumatol. 2015; 67 (suppl 10). http://acrabstracts.org/abstract/investigation-of-environmental-associations-of-fibromyalgia-pain-using-twitter-content-analysis/. Accessed November 12, 2015.

Hausmann JS, Doss J, Cappelli L. Use of Social Media By Rheumatology Fellows in North America [abstract]. Arthritis Rheumatol. 2015; 67 (suppl 10). http://acrabstracts.org/abstract/use-of-social-media-by-rheumatology-fellows-in-north-america/. Accessed November 12, 2015.

Handosteoarthritis and DMARDs at the EULAR Annual Meeting 2015 in Rome PLUS

At the EULAR Annual Meeting 2015 in Rome I’ve seen two abstracts / posters on osteoarthritis and DMARDs, actually both abstracts looked at hydroxychloroquine (HCQ)

N. Cid Boza and colleagues published [AB0865]: “Hydroxychloroquine in the symptomatic control of erosive hand osteoarthritis”. “A total of 10 patients were included between July 2012 and July 2013 and all completed a 24 weeks follow up.” “A 50% of patients reached a reduction of at least 20% of pain assessment by AUSCAN pain domain …”. They concluded: “Our results suggest that hydroxychloroquine may decrease inflammatory activity in erosive hands OA and thus functional impairment after 24 weeks … Hydroxychloroquine was well tolerated and no major side effects were observed.”

N=10 isn’t much to draw conclusions upon! It is unclear, how “inflammatory activity” has been measured. All in all, I cannot see any advantage of hydroxychloroquine over non-treatment. No major side effects in 10 patients is underrating the known risks of the drug.

N. Basoski and colleagues looked at [OP0304]: “Efficacy of hydroxychloroquine in primary hand osteoarthritis: a randomized, double-blind, placebo controlled trial.” They concluded: “This study shows that 24 weeks of treatment with HCQ in symptomatic hand OA did not reduce pain when compared to placebo. Also, no effect was observed in change of AUSCAN total and subscales scores or AIMS2-SF scores between both treatment groups. These results suggest that HCQ should not be prescribed in patients with primary hand OA with mild to moderate pain symptoms.”

Well, this study had been designed double-blind, placebo controlled, and was with N=98 in both groups well powered. The authors didn’t want to rule out that HCQ could be useful in other phenotypes of hand OA.

Not let’s come to the PLUS …

Today I’ve received the September issue of Annals of rheumatic diseases. X. Chevalier and colleagues published: Adalimumab in patients with hand osteoarthritis refractory to analgesics and NSAIDs: a randomised, multicenter, double-blind, placebo-controlled trial.” [Chevalier, X, et al. Ann Rheum Dis 2015;74: 1697-1705. doi:10.1136/annrheumdis-2014-205348] The authors concluded that “Adalimumab was not superior to placebo to alleviate pain in patients with hand OA not responding to analgesics and NSAIDs.”

We might conclude that DMARDs that are effective in rheumatoid arthritis and/or psoriatic arthritis might not work in osteoarthritis, even if joint destruction in the end might look similar. We might go on testing other traditional or biological DMARDs, but my guess is that it’s a dead end.

We should put the focus on studying how the process of joint degradation is started, maintained, and timed in osteoarthritis, before we look, which drug may have a chance to counteract this process.

The Magic Eight Questions for Safety in Treatment with Biologics

While at the EULAR Annual Meeting 2015 in Rome I've been asked for my Magic Eight Questions. I've chosen these eight questions out of safety concerns. In real life you can't spend as much time as you would do under study conditions. But nevertheless we have to make sure; our patients are not at risk of unnoticed side effects.

The eight questions cover quite a lot of, but not every possible side effect. You have to add one or two open questions. I ask these questions at every visit and always keep to the same order. By and by the patients learn what I want to know and help with telling me, even before I start asking. And they learn to look for the symptoms of possible side effects.

1. Contact to someone with tuberculosis

Most patients answer the first time with: "How should I know?", or: "Not to my knowledge." I tell them, that they will know, as public health officials will contact them, if they had been in contact. Lately I had two patients: one working as an emergency assistant and another working as an interpreter.

2. Infections

I look for any hint of an infection, also if these are past. We talk about the therapies and sometimes I can educate, if things haven't run smoothly, like antibiotics without making sure that it's a bacterial infection. Or not stopping the biologic in a relatively severe infection.

3. Loss of Weight

Most people will answer that they gained weight. I've seen more patients under traditional DMARDs with wasting due to the drug. Wasting - that is what we should look for.

4. Night Sweats

There are some patients, who have night sweats now and then, or where I have to ask if they also sweat during daytime. Together with loss of weight you might get the alarm ringing for more diagnosis and postponing the biologic.

5. Neurological disorders

Some patients think I ask for depression or nervousness. The question is more to know if dysaesthesia and other neurological disorders are developing.

6. Diarrhoea

Quite people think going three times per day to the toilet is diarrhoea. So you should give a definition. And I like to quote Hippocrates, who though four times soft stool per day is normal; people obviously ate more fibre in these days.

7. Stomach Problems

I added this question (also No. 6) because of the side medications and tocilizumab. Some people take NSAIDs without PPIs, so you might have to add a PPI to the regular medication.

8. Loss of Hair

Not every loss of hair is due to medication! It is the unexpected loss of hair that I'm interested in. Some patients have to count how many hairs from the head they loose in 24 hours. You might say that isn't an issue with biologics, but think of all you patients, who take concomitantly methotrexate, leflunomide, and others.

The Magic Eight Questions won't solve all your problems, but make your life as a rheumatologist easier and help to identify safety issues with your patients.

Tweetup at EULAR Annual Meeting 2015 in Rome

Also this year we had a tweetup at the EULAR Annual Meeting on Thursday 12:00 hr. The EULAR Press Office had given us a room (Hall 6 – Puccini Room) to meet. I’d like to thank Mrs Emma Reynolds from the Eular Press Office, who made this possible. This time we’ve been only a small number, but we had an hour of interesting discussion and took some lunch at the same time.

Here’s a picture or the people at the Tweetup:

C Gytz Ammitzbøll @cgytz

Lily Rheum ‏@L_tweet

Dr Irwin Lim @_connectedcare

Dr Ai Lyn Tan ‏@DrAiLynTan 

Lothar M. Kirsch 祁建德 @Rheumatologe

Copyright

We talked about copyright. It seems to be hindering discussions. Lots of poster presenters used the green symbol to allow pictures, which has been a step into the right direction. 
But during the sessions taking pictures was prohibited and enforced. The EULAR Press Office commented on this: "... enforcing the ‘no picture taking or recording’ rule is to protect the copyright of the data being presented at the congress because the copyright does not belong to EULAR but to the author. EULAR doesn’t have the authority to allow the recording of content and our only objective in upholding the rule is to protect the copyright of the data being presented at the congress." It is understandable that a no exception rule is easier to maintain, especially at a conference of such a proportion.
I’ll comment in another blog post on this later as there might be other forms of protecting the author's rights and encourage discussion of what he/she presented. 

EULAR and social media

The EULAR Press Office is twittering and was and is very active before, during an after the meeting.

But EULAR somehow hasn’t noticed that social is a challenge and could be used to promote the goal Prof. Cutulo had outlined in the visions of EULAR in his opening speech.

The ACR is much more into social media.

We’ve seen that on pharmaceutical firm had a board showing twitterers (all known to us personally or at least from the exchange on twitter). But let’s not leave twitter and social media in the hands of the pharmaceutical industry.

I’ll also take this up again later in a blog post.

How long it takes to become a rheumatologist

We compared the differences around the world on how to become a rheumatologist.

Over hours

I guess it doesn’t surprise anyone, that worldwide medicine and care in rheumatology depends on over hours.

To sum it up

Thanks everyone for participating. I hope to see you gain. Maybe we should meet at the next EULAR with a (short) agenda on what we want to accomplish on twitter as rheumatologists.

List ot twitterers around the EULAR tweetups

@alhkim

@ArthritisRes

@besada_emilio

@carvicab

@cgytz

‏@CreakyJoints

@Docrhumato

@doctorakerkar

@DrAiLynTan

@JoseCamposMD

‏@L_tweet

@Philipcrobinson

@PhilipGardiner

‏@matylda68

@NatRevRheumatol

@rajsengupta

@Rheumatologe

@Rheuma_suffolk

@rheumi_

@RonanTKavanagh

@synovialjoints

@zandbelt

@_connectedcare

Logistics at the EULAR 2015 Meeting in Rome

As I had attended the EULAR 2010 Meeting in Rome, I should have expected some problems this year, too. Maybe I blanked out out the logistic shortcomings. But let me already make it clear at this point, I don't think that the fault lies at EULAR.

I was staying at a small hotel in Fiumicino. Airport and the Fiera di Roma Congress Center are reasonable close by. The hotel was about 100 m away from the riviera. Molto bene! If it didn't turn out to a logistic nightmare. The sleepy, little town isn't well connected by public transport; maybe that's the reason I liked Fiumicino, not overcrowded by tourists. If I I took a late  start to go to the meeting I used a shuttle service. I only did this once. Otherwise I took the shuttle to the airport, the train from there and then another shuttle bus. The railway station is about 1.5 km from the congress center; if you missed the shuttle, you had to walk. If you didn't have a ticket, you found out that there is no vending machine at the station.

To add to my personal logistic nightmare, my airline had changed my departure from Fiumicino to Ciampino airport, only 24 hours before the start. To go from Fiumicino to Ciampino is a logistic challenge, if you do it the way I did, as the people I asked didn't know that there is a shuttle bus in between the airports.

Lets come back to transportation. There have been improvements to 2010, but still the shuttles were not frequent enough. And the stuttles to and from the airport were very insufficient. Even if I would have left from Fiumicino, I wouldn't have made it with the shuttle.

The toilet facilities were underdimensioned, which meant long lines after the sessions; the women's waiting line had been discouraging. Some doors didn't close. The sanitary conditions were bad, not always, but at peak times.

I found the logistics of catering very good, even for vegetarians!

Sessions were well advertized and it was easy to find the locations.

Would I come back to Rome, if in let's say five years the EULAR Annual Meeting would be there again? By all means yes!

EULAR Annual Meeting 2015 in Rome Opening Session

The Opening Session for the Annual Meeting of EULAR has already a history and is quite predictable, but this time we were greeted in Latin. So Prof. Cutolo, the current president of EULAR, started in an unusual way: „Salvete, medici totius Europae totiusque orbis terrarum!“ (Welcome doctors from Europe and all the world!)

The short history of EULAR and what it is today showed some new insights. EULAR spans across 47 nations and keeps contacts with other organizations like ACR, PANLAR, ILAR, APLAR, WHO, EMA etc., as well as patients' organizations.

EULAR has a vision for:

-        Research (EULAR will be the central platform for basic and clinical in rheumatology)

-        Education (EULAR will offer high level education for physicians, health professionals, and the people with the diseases)

-        Meeting (EULAR will broaden the reach of the meeting)

-        Advocacy (EULAR will have significant influence on EU level, assist actions on national levels towards improving research funding, social policy legislation, quality of care)

-        Standards of care (EULAR recommendations and criteria for rheumatic diseases)

-        Profile (EULAR will raise its profile to be more visible to patients and health care providers)

-        National Relations (EULAR will engage even more in national societies).

High set, but reachable goals.

Prof. Cutolo looked first at the numbers of abstracts – in 2000 (Nice) 850 abstracts and now over 4300. He then looked at the quality of the abstracts and found out that the quality was improving, too.

The cultural program has been predictable – Italian opera. How come, I was thinking of „Friends of the Italian Opera“ (Some like it hot – by Billy Wilder)? Nevertheless the program was well received and the selection had been standards that most people would know. Really enjoyable.

And there had been space for awards. One award (Abstract Basic Science) was going to a twitter friend: Philip Robinson (@philipcrobinson) from Australia. Congratultions!

The rest of the evening was dedicated to a social gathering in the EULAR garden. I talked with some German rheumatologists, whom I don't see regularly.

Tweetup EULAR 2015 Meeting in Rome

Sorry, that's in mid-city

08.06.2015:
The exiting news comes first. Mrs Emma Reynolds from the Eular Press Office just confirmed that we have the press conference room (Hall 6 – Puccini Room) on Thursday 12:00hr for our tweetup. That's less than three days before. Maybe we can share a few ideas on how to promote rheumatology on Twitter.

The EULAR 2015 Meeting in Rome lies only about a good week ahead of us and we should plan our tweetup. Let's plan for a Tweetup at the meeting itself as well as a social Tweetup as we already did a couple of times. if you're interested at former Tweetup at EULAR, please have a look at links below.

I propose communication should be done on twitter with the hashtag #EULAR2015.

There are the usual problems, which I believe shouldn't be too difficult to solve, like how many people to expect and coming to a consent as for time and place.

The Congress Center of Rome is outside the city, but easily accessible by train. The EULAR 2010 Meeting had been at the same Congress Center. It stretches quite a bit from the entrance to the last hall, but in between there were nice places to sit in the sun and relax - perfect meeting points for a group like ours. Don't forget to bring sun tan lotion. Sitting outside means catching the sun, at least it had been the case five years ago. Perfect also for a break in between sessions.

Let’s first try to make sure, who is coming. Next step would be, where we could meet.

The meeting will start at the 10th of June and end at the 13th of June. More on the homepage of EULAR: http://www.eular.org/. The Congress Center is called Fiera Roma (Via Portuense 1645/1647, 00148 Roma; Tel: +39 06 5178260 www.fieraroma.it).

“The Fiera Roma is less than 5 kilometres from the Leonardo da Vinci (Fiumicino) airport”. More information: http://www.congress.eular.org/congress_venue.cfm. Have a look at the map: http://imgpublic.mci-group.com/ch/PCO/EULAR/EULAR%202015%20-%20Hotel%20list,%20Rates%20&%20Maps.pdf. OT: You can already look up abstracts: https://b-com.mci-group.com/AbstractList/EULAR2015.aspx; observe the embargo policy.

Maybe we can meet in the vicinity ...

I suggest one meeting at the Congress Center Thursday noon – ample time for everyone to reach, and one at a Trattoria (maybe in the city or Trastavere) Thursday evening. Someone would have to make arrangements for it. Or we meet on Thursday noon and arrange then as up to now we're a small group. We could announce the meeting place on twitter for those, who are too busy on the 11th of June.
Here is a link to the map of the Congress Center: http://www.congress.eular.org/myUploadData/files/EULAR_2015_Exhibition_Plans.pdf - we'll meet as shown above. 

Some people already announced that they’ll be at the congress or not:

Attending:

Dr Irwin Lim @_connectedcare

Lyn March @lynmarch1
Dr Ai Lyn Tan ‏@DrAiLynTan

Carlo V Caballero MD @carvicab 

Lily Rheum ‏@L_tweet

 

Not attending:

Philip Gardiner @PhilipGardiner

Jose Campos  @JoseCamposMD

Sorry, if it looks like a „Friends of Carlotta" list.

Links to former EULAR tweetups:
Tweetup EULAR 2014 http://rheumatologe.blogspot.de/2014/05/tweetup-eular14.html 
Tweetup EULAR 2013 
http://rheumatologe.blogspot.de/2013/06/eular-2013-meeting-in-madrid-from.html
Tweetup EULAR 2012 
http://rheumatologe.blogspot.de/2012/06/tweetup-eular-2012-social-event.html 


PS. The EULAR Press Office ‏just tweeted, if we want to use one of their interview rooms for our tweetup. I think this would much better than other ideas we had so far. And I remember that we have done so before in Madrid two years ago.

Vers. 1.20 17.05.2015
Vers. 2.00 30.05.2015 
Vers. 2.10 01.06.2015
Vers. 3.00 08.06.2015

Parasites against Rheumatic Diseases - Trichiuris suis is tested in Patients with Rheumatoid Arthritis

Trichuris suis is a whipworm. How could a parasite be useful in treating rheumatoid arthritis? Joel V. Weinstock had the idea that worms could be helpful in Crohn's disease; studies are under way. Trichiuris suis dies after two weeks in humans as natural hosts for this worms are pigs.

Trichiuris suis seems to work on activate regulatory T cells such as T_reg  as well as regulatory dendritic cells and macrophages. Therefore the hypothesis is that Trichiuris suis doesn't only work in inflammarory bowel diseases but also in rheumatoid arthritis. The effective cytokine seems to be IL-10.

There is a current study in Berlin, which already uses capsules with 2500 worm eggs for each patient. The study has been powered to N=50. Right now the lab tests should be under way.

And I ask myself: will we see prelilimary results at the EULAR 2015 meeting in Rome?

Links:

Two German Text on Study

http://www.ndr.de/ratgeber/gesundheit/Mit-Parasiten-gegen-Rheuma,rheuma157.html  http://www.drfalkpharma.de/fileadmin/media/studien/Stellungnahme-TSO_20110127-final.pdf 

Joel V. Weinstock: The worm returns http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3744107/ 

21.11.2016:
I've forgotten about this blogpost, but there's another one with more detailed information on the TSORA study.
TSORA, Trichuris suis ova in Patients with Rheumatoid Arthritis – Study abandoned. http://rheumatologe.blogspot.de/2016/08/tsora-trichuris-suis-ova-in-patients.html But there will be an analysis of the existing study data.