When I was young I remember our family doctor coming to our home whenever I was ill. He’d examine me as I lay in bed and inevitably grab something out of his black medical bag that resembled Mary Poppins’ with everything in it but the kitchen sink. It seemed like his bag had all the magic necessary to make me well again.
Healthcare has changed drastically since the days of my childhood. First there’s the difficulty of finding a doctor who specializes in whatever ails you. Then you must wait weeks to get an appointment. Then once you arrive at the office you’re allotted a finite amount of time for your appointment.
It makes you wonder about the direction of the doctor-patient relationship.
Wouldn’t it be wonderful if you could find a well-respected authority that was available on social media, who provided important and topical information? What if there was someone who answered questions and surveyed patients to find out what’s most important to them?
I met such a doctor.
At The Consortium of Multiple Sclerosis Center’s Annual Meeting I learned about a presenter who is using social media as a means of providing patients with what they need.
His name is Gavin Giovanonni, MD – otherwise known as Professor G. – and he’s based at the Blizard Institute, Barts and The London School of Medicine in Whitechapel, London. He is a rock star of sorts, in both the MS and blogging communities. While his clinical interests include multiple sclerosis and other inflammatory disorders of the central nervous system, he is also interested in using social media to enhance the patient experience. And that’s exactly what he does.
His blog, BartsMS Blog focuses on providing news and information about MS. It’s a place of support where Giovanonni easily engages with readers, providing a welcome relief to a community of people living with an unpredictable and incurable disease.
To me, finding his blog was as refreshing as discovering water in the middle of a desert. My hope is that its mission will inspire other medical groups to follow suit.
Beyond the obvious benefits of having a blog like this is the value it adds in using social media for the benefit of others. We are inundated with the negative aspects of social media, such as misleading information from unreliable sources or amateur advice from online groups. Here’s a blog that is not only well respected but is also reliable and compassionate.
What really knocked my socks off was the number of page views he receives – 4,808,113 for one post!!! As a blogger I’d say that’s not only remarkable but it also means that Giovanonni is doing something right.
I asked Professor Giovanonni a few questions about why he decided to blog and how it’s revolutionized the way physicians can touch the lives of patients.
CC: Why did you decide to create a blog and get involved with social media?
GG: To help with my clinical practice. I was tired of having to repeat myself in clinic over the same issues. The straw that broke the camel’s back was CCSVI. (Editor’s Note: CCSVI is chronic cerebrospinal venous insufficiency, a controversial procedure for MS that is not FDA approved and in need of more research.)
In one clinic I must have spent 50% of the time dispelling the theory. Once I started the blog I simply referred my patients to the blog, or they could read about it before clinic and save time.
The blog has revolutionized my clinic time. My patients now have quality time with me rather than having to rush through things to answer their questions about the latest theory or fad in MS.
CC: Your page view numbers are more than impressive. Do you reach readers only through subscription or do you publish elsewhere?
GG: We don’t advertise or seek readers; the numbers have grown passively. We do, however, use other social media platforms that allow users to use their favorite platform to link to the blog; namely Twitter, LinkedIn, Facebook and Google+.
A large number of readers use an RSS feed or subscribe to the blog to get email alerts; these don’t show up in the numbers.
CC: How does your blog help with your research?
GG: We use the blog to bounce ideas off MSers and to get feedback. We also crowdsource ideas. The crowd also helps us prioritise research projects. We run numerous surveys via the blog and some of these have led to publications, albeit low impact publications at present.
Finally, some of the feedback we get from readers has helped us respond to grant reviewer’s to get funding for a trial. This helped us convince the reviewer’s that we could do the trial.
CC: How do you choose topics? Do you promote one therapy over another?
GG: We choose topics based on what gets published that week. We use several automated search agents to find new material, e.g. PubCrawler and Google Alerts.
No, we don’t deliberately promote one therapy over the other. However, at Barts-MS we are active treaters and subscribe to the early-effective treatment strategy. We are one of the groups to first implement the strategy of treat-2-target of NEDA (no evident disease activity).
CC: You stated at the conference that blogging could create change. Please explain what you meant and how this can take place.
GG: We believe knowledge empowers. If you are a well-informed MSer you can ask the right questions and nudge the healthcare professionals who look after you to change the way they practice. You can actually provide them with new information about MS.
Not a week goes by without me learning something new about MS from one of my patients. I think our blog, which reviews new research, empowers MSers in this way.
CC: Please explain the importance of how you researched CCSVI using social media (i.e. Google Trends) and also your prediction about stem cell therapy.
GG: I simply used Google Trends to look at how CCSVI as a meme was spreading across the world. It clearly displays the epidemiology of an epidemic; yes, ideas and theories spread like viruses. CCSVI also has the features of a typical anti-science movement, which has been well studied in other areas, for example HIV-AIDS deniers. We therefore used the CCSVI data to publish a paper and raise the issue of how important social media is for healthcare professionals.
If we want to counter future anti-science movements, for example certain stem cells therapies, we need to interact with MSers in the same forums that spread these epidemics.
CC: What list of questions did you create that is useful for patients when they visit their neurologist?
- What is multiple sclerosis?
- Are you sure that you have MS?
- What type of MS do you have?
- What prognostic group do you fall into?
- What is the risk of you not being treated with a DMT?
- Do you have active MS?
- Am I eligible for treatment with a DMT?
- Do you understand the difference between the treatment strategies of maintenance-and-escalation and induction therapy?
- Do you understand the concept of treat-2-target of no evident disease activity (NEDA)?
CC: How do you educate readers on why it takes such a long time to get medications approved?
GG: By providing them with examples of drug development pipelines and explaining to them how research is done. My colleague, Professor David Baker (aka The Mouse Doctor), has created a board game to explain the process.
CC: Why do you feel the big issue with MS is cognition and brain atrophy, and how do you address this on your blog?
GG: Mainly by repetition; saying the same things over and over again. I also use pictures, shrunken brains and walnuts, analogies (the shredder) and infographics to get the information across.
The best way is telling stories, i.e. to present case studies of MSers who have not been treated actively and the consequences of therapeutic nihilism.
CC: How did you redefine MS by re-branding it as “preventable” and giving patients better, informed choices early on in their disease?
GG: The rebranding is focusing on cognition and calling MS a dementia, a preventable dementia. People value their cognition over most other functions and the aim of the rebranding exercise to make them aware of the damage that MS can do to cognition before it causes physical disabilities.
CC: I found a quote on the UK Multiple Sclerosis Society website where patients characterize you as one of the “good guys” and admire the work you are doing for progressive MS.
GG: I am not necessarily a good guy; I simply care about people with MS. I also think we need to be positive and give people with progressive MS hope. I also don’t pull any punches; I say it as it is.
People need to be told the truth and I give them the truth, at least the way I see it. Too many neurologists and healthcare professionals tell MSers half-truths about the disease. They selectively hold back information so as not to upset their patients. This is wrong.
Gone are the days of paternalistic medicine; we are now in the era where access to information is easy. MSers can Google MS and find out everything they need to know. We can’t try and filter information because it simply does not work.
What we need to do, however, is feed the information to MSers at the correct rate so that they can handle and understand it, and put it into the correct context.
Too much too quickly can exacerbate anxiety and fear. MS education is like peeling an onion layer by layer; if you peel it too fast it is going to make you cry. People with MS need to know this.
My thanks to Professor Giovanonni for taking the time to answer my questions and for the work you do for the MS community.