Why a Telegram channel for brain tumours was created?

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.

How Twitter enriched me professionally as a radiation oncologist

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!

The launch of Telegram channel (CNSSM- Central Nervous System, Social Media).

Over the past few months, I have been exploring Telegram chat application over the choice of other options that have flooded the cyberspace. Telegram embodies the best prospects of all in one neat package. It’s apparent that its closest competitor WhatsApp is the most commonly used app on the planet, but it comes with several limitations. The chief amongst them is constant surveillance by Facebook which makes it impossible to be “private” even though; it may have end to end encryption. I won’t go into details here but suffice to say that Telegram offers a much better option to interact.

One of its redeeming features is channel and hashtag search. Channels are uni-directional flows for information. It means that users can read it but not reply to it. Subscribers can be directed to chat groups to discuss any pertinent issue. Since the channels have unlimited members, Telegram offers a perfect scalable option for that. The exciting bit is hashtag function which, for me, was quite serendipitous. The posts come tagged automatically like #events #charity (pushed by different brain tumour charities), #updates and my favourite #motivation (posters with quotes). I can also add reminders for various websites/ events over a recurring interval.

A Telegram group works like any other chat application but with distinct advantages. It can have multiple administrators (to moderate discussions over different time zones), users can also add hashtags to search (or do a global search for anything discussed), access to all previous messages for new members, mute notifications and notification alert only if their username is tagged in replies. I prefer anonymity and privacy in social networks. Twitter may serve as an excellent platform but is not altruistic- it logs and tracks every user. Further, it has a severe limitation of characters which does not address individual queries effectively.

The idea behind is to consolidate everything in one application. The telegram app is accessible via desktops and multiple platforms (including a web browser) which doesn’t constrain users from one locked in place. Phone numbers aren’t required to join a group or channel. They just need to do a global search via public username; here in this case “cnssm” (without quotes).

Another distinct advantage is an amplification of social media messages. We are drowned in by mobile notifications and Telegram offers granular control over what gets your attention. Much of what I do on Telegram is automated which makes things easier to manage.

I hope that most charities would consider this platform- its fast, quick, private, secure, scalable; indeed, everything that’s required to keep privacy intact. Once the channel grows, I plan to introduce video messages; a quick blurb on what patients need to do and focus on; have a separate group for professionals to share best practises and files. Ideally, we could have a rehabilitation specialist, a dietician and social workers. Charities should also keep a token presence here to identify users and guide them efficiently for financial issues.

Whole brain radiation dose: think about it.

I have always wondered about the tolerance of brain tissue to radiation. Whole brain radiation can be “safely” given up to 54-60 Gy (in the previous protocols for glioblastoma- NO LONGER used). Brainstem dose, in the current QUANTEC era, is not exceeded to 54Gy as a point dose (disregard the 10cc volume for a minute).

The whole brain mean dose is preferably not exceeded beyond a mean dose of 28Gy which we are propagating in the post-hippocampal era (so as to say).

It brings me back to the original question. Why is a focused radiation dose exceeding 60Gy (for example) more injurious than whole brain dose to the same effect? And why brainstem isn’t affected in that scenario?

Another question. If a phased plan is executed, is it sufficient to only add up the mean doses? This is because both the phases have used different calculation subsets; radiation delivery is also going to be markedly different.

Well, no easy answers!

Scientific elitism, failure and research.

Dwight D. Eisenhower Source: Wikipedia

I was alerted to an interesting discussion on effects of federally funded research- the rise of scientific elite and “military-industrial complexes“. The thought process was initiated with a compelling article on what President Dwight D. Eisenhower had mentioned in his address about 50 years back.

I quote:

“Today, the solitary inventor, tinkering in his shop, has been overshadowed by task forces of scientists in laboratories and testing fields… ,” Eisenhower warned. “Partly because of the huge costs involved, a government contract becomes a substitute for intellectual curiosity virtually.”

While continuing to respect discovery and scientific research, he said, “We must also be alert to the equal and opposite danger that public policy could itself become the captive of a scientific-technological elite.”

There’s been enough debate in the knowledge circles about the exact import of this. But these words ring real as the years have passed. “Military-Industrial” complex has grown in stature, causing havoc, while the new upstarts in the scientific research world are increasingly elbowing their way in this cosy club from China.

This isn’t a geopolitically nuanced post. It only serves to reflect my concerns about wastage of research efforts and how much it is held hostage to scientific committees. It is a good thing to keep a rein on how the dollars are being invested, but this also comes with the riders on how difficult it is to fail.

All of this has come at the cost of progress and reward to the scientific thought and tinkering.

It is true that the advent of “atomic bomb” spurred on research in the US, but there was defined anxiety to achieve the goals. In Asia, we grapple with the income inequalities and access to equitable healthcare, while in western democracies, they are floundering to create the next breakthrough. Hence, the likes of “project moonshot” because it is recognised that something is required.

It leads us to another question: Has the scientific process and the research methodology gone too bureaucratic in its approach?

Likewise, the cost of publishing the research has become beholden to the established interests. The scientific cabal controls access to literature pushing vanity metrics (which in turn determines means to get further funding). It transpires that if the research isn’t published in a “high impact journal”, it isn’t meritorious enough. The unstated pressure to achieve publications in high impact journals breaks most people resolve to push through them. It only leads to either cronyism, cooking lab results to dress them up and an established PR machinery to impress the charities backing the research efforts.

Who loses out?

The patients. It is because the bulk of published research can neither be reproduced nor translated in clinical domains efficiently.

The spinoff from this has also led to an arms race to find the next big molecular target. The idea is to of course, “sell” it to the pharma company to patent it. While not inherently evil but it feeds the same demon wherein we know how equitable access worsens.

Rinse and repeat.

What are the implications for developing countries?

Herein, lies the rub. It is sad that bulk of doctors have turned away from scientific research because what they see in the patients is not meaningfully communicated in the lab. Dr Ronald Ross discovered the malarial parasite while actively practising medicine. Leannec invented the stethoscope because he needed an efficient way to auscultate the patients presenting to him. He went stumbling from various kind of tubes to something resembling a stethoscope that we now know as- universally ubiquitous.

Ideally, we should be researching the hows and whys of radiation effects on cells, the way it breaks DNA, the downstream effects, minimising the impact on healthy tissues, exploiting the fractionation schedules and a better mathematical modelling. Instead, we are going agog about Amazon and JP Morgan’s of the world stepping in healthcare, ferreting away the precious human health data to their data centres, feeding algorithms and fuelling the hype cycle about AI in healthcare as the next breakthrough. It only reflects how faith in the system has broken down.

Clinician-scientist is a moniker. What we lack is a comprehensive roadmap to what we want to achieve- not concerning survival but a meaningful continuation. As the world celebrates cancer day, it is a call for the radiation oncology community (and the medical profession) to evaluate its priorities and work towards alleviating what we are supposed to do.

What is the way forward?

The way out, forward, is to break shackles of our minds and allow ideas to fail. If I were to have my lab (someday!), I would dedicate a portion of funding only to tinker with the possibilities. Involve people from different fields to brainstorm on what all possible directions the idea can go. Involve mathematics, for example, with probabilities on what can go wrong or right. These are not the core competencies of clinicians but opening up dialogue and communicating with teams looking at the same problem with a different perspective can help enlarge the idea.

“Cure” will not be hope but a purpose and an end all.

Just write!

This is an unstructured post. For the past few weeks, I have been able to discipline myself and just writing.

just-write

Writing makes a lot of things more apparent. It helps to focus. I have forced myself to unshackle from the constraints of modern technology. To shut down the constant din of notifications. To be better off than being distracted.

As usual, the continuous improvement in making Twitter work for me has helped. I invested a lot of time to make automation work. This has resulted in much cleaner timeline, a much better opportunity to follow colleagues, to find out what is being discussed and participate in more meaningful online discourse.

Writing is prompted by slow thinking as well.

For all academics out there. Just write. The dividends are very rewarding indeed.

Slow thinking: Pause and reflect

slowthinkingI was alerted to this remarkable piece of The Quartz today which helped me to reflect on it. It lists the virtues of “slow thinking“.

If we don’t come to a quick conclusion and choose a side, it can feel like we’re letting the proverbial bad guys—whoever they are in a given case—win. Thus, an opinion becomes a moral imperative, an act on behalf of humanity, or at least on behalf of whatever cause we support.

This is the familiar refrain on Twitter and various other “social media” websites. We need to be able to tame Twitter, use it more efficiently  (and using it for academics, as in my case).

Think. Pause. Reflect. Think some again.

Digital detoxification is essential.

Having no fixed position, which seems unthinkable on the internet, is actually a liberating way to navigate the world.

I think its the critical knowledge for all academics out there.