I stumbled on this video in my Twitter timeline. Hear the legend speak!
I am pleased to be associated with Targeting Cancer team. I slowly became aware of the team in my Twitter timeline. I loved the infectious positivity as the innovative ways they got out to spread the word.
It was natural that I reached out to the team and a quick flurry of emails led me to exchange (and permission) to use their logo.
I have started using it in my public talks. I also got a cup printed out and took a selfie with it!
It was tweeted out today.
You can read more about Targeting Cancer here.
Here’s Dr Sandra Turner speaking about Radiation Therapy:
Conferences can be divisive.
There are some oft-repeated arguments on the same theme- go to any conference, for example, and you have myriad users making unverified claims. The speakers are often “attacked” by the more “knowledgeable” members who wish to get “noted”. It only serves to fan one’s ego without advancing the cause of science.
Sadly, it is also meant to mean that you haven’t arrived unless you have bloodied a few noses or organised conferences yourself (where you get even better opportunity to show off).
Social media has taken this to the next level. Under the garb of either anonymity or “reputation”, people are pushing their agendas. I have seen incredible hype machinery (like the Wired magazine for example) being roped in to promote healthcare products (as the next best thing). As a result, it becomes challenging to separate the wheat from the chaff.
This slide by a Twitter user came as a breath of fresh air and I liked it because it encapsulated everything I have firmly held so far.
As professionals engaged in patient care, it helps to keep an even keel. I’ll attend a conference which allows saner discussion. Likewise, on Twitter, I block or unfollow people with agendas.
The idea behind setting up a Telegram channel and a group was inspired by holding a Twitter-based discussion with a colleague. I am placing this on record here.
The central premise is a straightforward thing. If I were to face a similar situation, what would have been my state of mind? What is the ideal way to go about this? So, I decided to set up something in a way which I would have wanted. The first and foremost is the platform wherein I could access psychological support. These issues hit from nowhere, and it is essential to know that I am not vulnerable nor alone. While a lot of emphases has been placed on breaking bad news by the oncologists, handling the aftermath of emotional distress by a patient is an unaddressed issue. Having access to psychological resources or a support group becomes imperative at that moment.
How do I choose a support group? Ideally, one that has an active involvement of a clinician in some capacity. Most patients hit Google with a furious pace to know more about the disease. It is essential to guide them efficiently to informed sources about what we are dealing with, the likely side effects and estimated financial impact. Like a multi-disciplinary set up in a hospital, it should reflect some of it’s moving parts in a chat group as well. Patients should reasonably be expected to be guided through a simple workflow; a place where their queries are answered.
That, in simple terms, is the purpose of having a dedicated Telegram group. It is envisaged that patients would find others who have gone through similar experiences, interact with rehabilitation specialists (the medium should allow exchanging large files like videos or multimedia content) and access all old messages about the same thread (through a global search or use of hashtags). These are the broad contours to get the project off the ground and fine tune it as we go along.
Besides, regular updates and events about brain tumours need to be disseminated. A stream of messages in the proper group would become too overwhelming for every participant. Telegram offers a mechanism to copy the link of a particular message in the channel and share it anywhere (each exchanged message has a unique link available for the administrators). This would make it more efficient to share content across the application.
As with any application, users would need time to get used to the user interface. Twitter isn’t intuitive but is most widely used (along with Facebook). Twitter is meant for the immediacy of events, as they unravel. Hence, it becomes difficult (or even overwhelming) for a vast majority of users to get used to it. Like for example, no one subscribes to public lists of patient advocates that I have curated and collected, because most users aren’t aware of how to use Twitter effectively. As a result, their timelines are cluttered forcing them to spend more time. Due to process improvements, I usually skip over my timeline (using Mac desktop version) in less than 15 minutes because everything I need to focus on is there.
I hope that users find Telegram a vital addition to their daily lives.
I am a recent convert to Twitter but have flirted with it in its earlier days of inception when 140 characters were the norm. It wasn’t apparent as to why this service came into existence in the first place. Facebook started off with a similar pretence of “connecting dorm mates”, and it grew viral pretty fast from an invite-only platform to connect a majority of the online population.
I will not go in its politics or how toxic it has become. Its algorithms are an opaque science, and Facebook is a platform for social and psychological manipulation (despite public claims to the contrary). For this write-up, I’ll focus only on Twitter since I am engaging with it on a daily basis.
Twitter offers a place for discussion, sharing links, some media (pictures) and a medium to reach out to other users for marketing. Advertisers see some value in it (because Twitter offers granular options for targeting users). Beyond that, most scientists and doctors have discovered this as a platform to articulate their viewpoints. There’s life beyond academia as well, and most events affect us collectively. However, it blurs lines between personal and professional lives, often. This has prompted several professional organisations coming in with their “recommendations”, but social media is like any other platform which is public.
There is no inherent privacy if you get online. Period. Likewise, all this serves as a construct to showcase or to interact (like presenting a paper in conference or hanging out with colleagues post lunch). This also leads to a considerable scope for confusion because of the inherent limitation of characters. Like any written word, it cannot offer tone, tenor and contextual meanings which leaves things open to interpretation. However, Twitter provides only a limited scope of interaction via “re-tweet” or “like” which signals the intent. Beyond this engagement, it is a very limited platform.
With these caveats, Twitter offers a rich experience in professional interaction. I chanced on pathology colleagues, for example, who could reach out others in the world for a rapid “second opinion”. Pathological inferences usually require objective criteria, and it is not possible to be swayed by “wisdom of the crowd”. It makes it easier to nail the diagnosis for anything that’s obscure. Likewise, I interacted with a radiation oncologist, who advocated “shining the light in the basement”- exhorting fellow oncologists to embrace this medium. Another instance wherein I interacted with someone from the US to discuss the QA for a newer gamma knife machine. The follow-up comments were interesting, and I learned a lot in the process.
Similarly, it was fun to interact with professionals from down under! They are using social media in a very positive way (by dancing!) to target cancer and bring about an attitudinal change for radiation oncology (unstated and underused, like anywhere else in the world). I love their imaginative use of “targeting cancer” pin-ups with the backdrop of landmarks. Cats and dogs are also a part of it, for good measure! The idea is to get the word out to patients, who shouldn’t ever feel that they are alone. We are all a part of the team to take care of them.
These advocacy efforts on behalf of professionals are in addition to a lot of other patient advocates- one who has gone through the trauma of diagnosis and treatment and have lived to tell their stories.It is instructive for us to learn, as doctors, to understand and be empathic to their fears, concerns and how cancer diagnosis fundamentally changes their lives. A prominent patient advocate, for example, even suggested having “lego based models” to show what patients would be going through (radiation therapy mockups). A brilliant idea indeed!
Scientists have also joined in this chorus and have added their might to it. I follow their efforts to bring science to the public domain, how they navigate through government bureaucracy and how translational science can become the cornerstone of “cure”.
So yes, there are multiple positive attributes to being here on social media! For those who are starting out, a quick re-cap. You can follow specific “hashtags” like #btsm (brain tumour social media) or #radonc which are widely used around. Topical conversation happens around these hashtags. If you suffix the character “@“ before anyone’s username, it is like a “shout-out” to draw their attention. (Similar technique works in Telegram).
Join in here for the conversation and enjoy! Remember, you have only one life to make a difference!