Official session overview:The tweet up is an informal event without an agenda organized by ACR members. It is an opportunity for members who engage on Twitter to meet face-to-face. All annual meeting attendees are welcome to participate. The tweet up is designed to facilitate personal connections within the international rheumatology community.
The use of social media in medicine has continued to mature. Major medical meetings now have social media as a centerpiece for discussion, indexed on Symplur’s Healthcare Hashtag Project. Online journal clubs have organized, such as our very own #RheumJC, holding monthly sessions with participation of authors to directly answer questions about their articles.
There is a growing interest in documenting the use of Twitter at medical meetings. “Tweeting the meeting” has many benefits, including enhancing the educational experience of meeting attendees, disseminating content to those not in attendance (physicians, patients, general public and the media), and increasing the visibility of the medical organization. While still seen by many as frivolous, an increasing number of physicians and organizations understand the real value that comes from an active social media presence during conferences.
But the main reason I don’t own any type of smartwatch is that I don’t see anything useful that they allow me to track.
When I look for things to track, I look for key performance indicators (KPIs): things that I consider modifiable activities, that when tracked or measured, correlate with improvement in specific goals.
With this in mind, I’ll start with a few of the more common activities that I don’t track (and why):
Steps per day. Although the recommendation to walk 10,000 steps per day is an arbitrary number, I do find that it is an excellent suggested baseline level of activity for most people. However, since I’m a fairly active person that exercises most days of the week (and even uses a standing desk at work and at home), I don’t find that this has any correlation with my fitness level.
Bodyweight. I’m fortunate enough that my bodyweight has varied little throughout my life. I credit this mostly to exercise (primarily strength training since my teenage years), along with generally watching my diet. Certainly, if my bodyweight would increase (especially in the form of adipose tissue), this would quickly become one of my KPIs.
Calories. In recent years, increased importance on the type of foods that we eat has been recognized. While the total energy that we consume certainly matters, the effects of different types of food also clearly play an important role. In other words, you would expect your body to react differently to 2,000 calories of pure sugar versus 2,000 calories of grass-fed steak.
Activities that I track (and how):
Heart Rate Variability (HRV). HRV is a measure of how much beat-by-beat variation occurs in your heart rate, which is governed by the balance of sympathetic and parasympathetic nerve activity. More simplistically speaking, HRV can give a sense of how much stress the body feels at a given time. (PDF of a review here). In a fully rested/low stress state, you should have a high HRV, and under conditions of high stress, you would expect your HRV to decrease. Increasingly, high level athletes are using measure of HRV to titrate their level of training for the day.
I use an app called HRV4Training (App Store) to track my HRV most mornings, which uses the iPhone camera and flash to measure your heart rate via plethysmography with surprisingly good accuracy (especially if used in a dark room). After this, your HRV can be viewed in the form of rMSSD (the unit by which HRV is calculated, called the Root Mean Square of the Successive Differences).
In my case, whenever my HRV rMSSD is above 80, I’m fairly well rested (which means I’ll probably do deadlifts that day).
I’ve found that my HRV seems to most strongly increase with the amount of perceived rest that I get, with frequent moderate-high level exercise, and with meditation. My HRV seems to decrease the most when I’m sleep deprived, when I’m sick (or feeling like I might be getting sick), or after overly intense exercise (especially too many deadlifts).
Exercise. I track exercise using a website called beyond the whiteboard, which is popular in the CrossFit community, and fits very well with the style of workout that I often perform. The site allows you to analyze your overall fitness level in comparison to other athletes who use the site, and also helps you identify strengths and weaknesses in your overall fitness.
Sleep. I have a Sleep Number bed that has built in sleep tracking, although I don’t find that it always correlates with my perceived level of rest. Sometimes, this is because I’ll fall asleep in my son’s room while putting him to bed, so the data is wrong (such as on Sunday of the picture below).
Meditation. Over time, I’ve come to find a great deal of benefit from meditation (and I’ll give Dr. Ronan Kavanagh credit for initially turning my onto the idea of it.) I currently try to meditate 10–20 minutes each morning using the Headspace app (Web | App Store), and have felt increased ability to focus and generally calmer.
Other: Mobility & Diet. I use an app called Way of Life (App Store) to get a big picture view of a few things I’m tracking, such as meditation and exercise, and other things I’m trying to watch, such as doing some mobility work (especially hips, ankles, and shoulders) most days. The app essentially allows you to check yes or no for each day, and encourages you to go on a streak of 3+ days.
”We are what we repeatedly do. Excellence, then, is not an act, but a habit.” — Aristotle
#ACR15 marked the eighth consecutive American College of Rheumatology Annual Meeting that I have been fortunate enough to attend. I had the feeling of coming full circle, since the first ACR meeting I ever attended (when I was just a chief resident) was the 2008 meeting, also held in the wonderful city of San Francisco.
As I’ve mentioned numerous times before, since this meeting is the biggest thing in rheumatology each year, I spend some time thinking about how to optimize my time there, which results in an incredibly full schedule.
”Scientific knowledge is a body of statements of varying degrees of certainty—some most unsure, some nearly sure, none absolutely certain.” — Richard Feynman
The pre-meeting ACR Review Course is an educational highlight for me each year. Personal favorites were the sessions on Central Nervous System Manifestations of Rheumatic Diseases and Extra-Pulmonary Manifestations of Sarcoidosis, although I’ll eventually need to repeat the A Rational Approach to Dermatology for the Rheumatologist on SessionSelect.
This year, as an alternative to tweeting out main points, I took notes on most of the sessions in Evernote and made them available publicly.
(I format my notes using Markdown, which combines readability with the ability to easily convert them to other formats. Highly suggested if you do any online writing).
Tech Med Track
“I’m interested in things that change the world or affect future in wondrous new technology where you see it and you’re like, ‘How did that even happen? How is that possible?’” — Elon Musk, Wait But Why: The Cook and the Chef: Musk’s Secret Sauce
We had another great Tweetup this year, and it was great to both catch up with friends from all over the world and finally meet a number of people in person. At the #ACR14 Tweetup, I had mentioned the article “You don’t have to be local,” that discusses the balance between being a local or a global person, and the Tweetup is a great way to keep this in balance, along with a great networking opportunity.
During the meeting we discussed plans to improve #RheumJC over the coming year, which will include expanding the organizing team. Keep an eye out for a more official call for anyone interested in helping.
Dr. Jonathan Hausmann (@hausmannMD) presented Use of Social Media By Rheumatology Fellows in North America (abstract #1012) showing that Twitter was used by a surprising low number of rheumatology fellows at 18%, hypothesizing: “It is possible that warnings about potential harms of social media within healthcare institutions have made rheumatology fellows less likely to engage on these platforms.” Given the strong benefit many of us have seen from the use of Twitter for ongoing education, I agree with suggesting further steps to “examinine the barriers to professional use of social media, as well as educate physicians about its potential benefits.”
Dr. Samuel Whittle (@samwhittle) presented Investigation of Environmental Associations of Fibromyalgia Pain Using Twitter Content Analysis (abstract #2296), using a novel method of analyzing Twitter user data: “Sentiment analysis, a computerized linguistic method that uses natural language processing and text analytics to identify subjective information … to quantify the affective content of each included tweet” and correlating this with weather data at the location of each individual tweet. Results showed that humidity increases were the only weather change associated with higher pain (r=0.009, p=0.001). More importantly, this abstract is an amazing example of the vast data available from social media for analysis.
The session on Wearable Biosensors to Advance Rheumatology, with talks on Wearable Biosensors and the Quantified Self Movement by Dr. Brennan Spiegel (@BrennanSpiegel) and Applying Biosensors to Advance Clinical and Research Settings in Rheumatology by Dr. Jeffery Curtis (@RADoctor)are both packed with cutting edge insights into how we (and our patients) will be using biosensors in the near future, and where this area may be going. I’ll have to take a second look at this one as well on SessionSelect.
The work of CreakyJoints (@CreakyJoints) and Dr. John Cush’s RheumNow (@RheumNow), who are building excellent, evidence based, online communities and resources for patients and rheumatologists respectively. You’ll notice the influence they’ve had (especially @CreakyJoints) at #ACR15 in the statistics below.
Meeting with ABIM Regarding MOC
During the meeting, I volunteered to echo the frustrations of the social media world regarding MOC to the ABIM during a focus group (at 7:15am, no less).
Suffice it to say, we’re quite fortunate that the ACR so strongly supports it’s members with a well written position statement [pdf]. Thank you!
The Tweetup has become an yearly event at the American College of Rheumatology Annual Meeting, and the use of Twitter at medical conferences is now so ubiquitous that it is indexed and searchable on Symplur, which includes the meeting hashtag for this year: #ACR15.
”We’ve reached a point where social media is now part of the professional workflow. While it’s a minority that understand and leverage these tools, the ones who are onboard are helping reshape the image of our organizations and our profession. Those of us creating, curating and conversing in the great wide open will continue to benefit from our public presence.”
The goal of the Tweetup is always to give people a chance to connect on the topic of social media in rheumatology and medicine. Every year, it leads me to new projects such as #RheumJC, the recently formed Rheumatology Twitter-Based Journal Club. I hope others find similar opportunities from attending.
Looking forward to seeing everyone at the Tweetup!
The project points out that nephrology has the fewest randomized controlled clinical trials of any subspecialty in medicine, and hopes to bring interest to areas where gaps in knowledge are most lacking.
In the area where nephrology intersects with rheumatology, we have actually been quite fortunate. The two conditions in this area which carry the highest burden are ANCA-associated vasculitis and lupus nephritis. For ANCA-associated vasculitis, we have been fortunate to have recently well performed RCTs regarding the use of rituximab for induction of remission and maintenance as well as treatment of relapses.
We have also made recent advances in our understanding of therapies for induction of lupus nephritis, with studies looking at the role of tacrolimus as monotherapy or as part of a multitarget therapy regimen along with MMF.
Despite this, one of the biggest questions rheumatologists and nephrologists have regarding lupus nephritis is: why the heck doesn’t rituximab seem to work in bigger RCTs?
My entry for DreamRCT: RoRo-LuN (Role of Rituximab only in Lupus Nephritis):
Previous studies looking at the role of rituximab for the treatment of lupus nephritis have been highly criticized for poor design. Initial data from the RITUXILUP group (rituximab and IV methylprednisolone on days 1 and 15 with background MMF but no oral steroids) have been extremely promising, but many patients cannot tolerate MMF, and the role of rituximab as monotherapy given over 6 month intervals will remain uncertain. RoRo-LuN would randomize patients with biopsy proven class III or IV lupus nephritis to one of three arms to be followed over 2 years, with the primary endpoint to be renal remission defined as normal creatine or return to baseline creatinine, inactive urinary sediment, and urine protein/creatinine ≤0.5. Group 1: rituximab without oral steroids (rituximab 1 g on weeks 0 & 2, 26 & 28, 52 & 54, 78 & 80, IV methylprednisolone 1 g on weeks 0 and 2); group 2: same as group 1 but with the addition of tapering oral steroids over 6 months; group 3: standard therapy (initial pulse steroids, MMF, tapering oral prednisone).
Unfortunately, despite clinical experience by clinicians and promising reports in many smaller studies, larger RCTs have not shown effectiveness of rituximab against lupus and lupus nephritis. However, these studies have been extensively criticized for their trial design as the reason for failures.
The first of the larger RCTs evaluating the role of rituximab in lupus was the EXPLORER trial, which looked at patients that did not have renal involvement. This trial randomized 257 patients with moderate-severe SLE (on one background immunosuppresive [methotrexate, azathioprine, or MMF], with 57% of patients corticosteroid deponent) to rituximab infusions or placebo at a ratio of 2:1 on days 1, 15, 168, and 182. The primary endpoint was the effect of achieving and maintaining clinical response at week 52, assessed using BILAG, was not met. The EXPLORER trial was criticized for having a small number of participants, confounding background immunosuppressives, and for questions regarding the ability of BILAG to detect a meaningful clinical response.
Following this, the LUNAR trial looked at 144 patients with class III or IV lupus nephritis being treated with MMF and corticosteroids, and randomized them 1:1 to receive rituximab or placebo on days 1, 15, 168, and 182. The primary endpoint was a 20% superior renal response in the rituximab group at week 52. Again, the primary endpoint was not met, although overall response rates were 56.9% in the rituximab group compared to 45.8% in placebo. Failure to meet the primary endpoint was thought due to faulty design due to background immunosuppressives confounding any benefit of rituximab, as well as being underpowered.
Interestingly, 78-week follow up data to the LUNAR trial did suggest that rituximab had a longer term effect, with improved proportion of patients who had remission of proteinuria and fewer patients who required additional immunosuppression:
”In LUNAR, the exploratory data demonstrated that at week 52, the difference (10%) in the proportion of patients with 50% reduction in proteinuria favored rituximab treatment; the difference increased to 17% at week 78 (P = 0.04).”
”The other compelling suggestion of a benefit is the finding that significantly (P < 0.01) fewer patients in the rituximab group required cyclophosphamide for worsening disease, and more achieved a renal domain BILAG C score, and this was sustained up to 78 weeks.”
The currently ongoing RITUXILUP trial hopes to avoid oral steroids entirely in patients with class III/IV or V lupus nephritis while determining whether rituximab is an effective therapy when added to maintenance MMF. In this regimen, patients are given two doses of rituximab (1 g) and methylprednisolone (500 mg) on days 1 and 15, and maintenance treatment with MMF, compared to standard therapy using initial IV methylprednisolone, MMF, and tapering oral steroids. This trial is powered to show superiority non-inferiority of the Rituxilup regimen, with patients followed for at least 2 years, and should be completed in 2018.
“Life can be much broader, once you discover one simple fact, and that is that everything around you that you call life was made up by people that were no smarter than you. And you can change it, you can influence it, you can build your own things that other people can use. Once you learn that, you’ll never be the same again.” — Steve Jobs
Here’s a quick roundup of things I’ve been up to around the web, and my other active projects.
More details to come in future posts, but a short summary of what’s coming for ACR 2015:
I’ll be speaking at on the new TechMed track at ACR15 in San Francisco (along with Dr. Suleman Bhana (@DrBhana) on Sunday, November 8, 2015 from 2:30–4:00 PM on Tech Tools for Rheumatologists: Introduction to Automation and Workflows to Save Time and Increase Office Productivity.
This will be followed shortly after by the annual #ACR15 Tweetup from 4:30–6:00 PM in the West Building Rm 2000–2002. If you’re unfamiliar with the Tweetup, check out my post from last year.
Upcoming Experimental stuff:
I’m in the beginning (soft-beta-pre-launch) phase of a new site I’m calling ArthritisProject.com, which I hope to turn into a more structured educational resource for patients to learn about their arthritis. If you’re a patient interested in this, sign up for the mailing list on the site, where I’ll push out updates as they’re available.