Social media: Caveat emptor!

The debate about doctors being on social media hasn’t ended. Most people, I have spoken to, have very negative connotations about it. They feel, very strongly feel, that Twitter is nothing but an echo chamber of bigotry, lies and cussedness. It “might” be true but then technology is what you make it out to be!

Facebook is another different beast. Their claimed usage is about 2 billion users, but no has independently verified these numbers. They have been able to grow this because of powerful network effects. Most users feel comfortable here because it allows them to interact with “friends and family”. It also means that most users are reckless about it.

Facebook is a global surveillance system that gives dopamine fuelled high to be voyeuristic or exhibitionist. Their terms of service point towards collecting the data and being able to share it with “third party affiliates”. I often chuckle when people get horrified that the service they depend on its utility, for administrators, for psychological manipulation. What would it take to learn the lessons?

Social media is as good as we make it out to be. The best ideas for the blog post appear in my Twitter timeline. I get ideas, dwell on them and then write. One way out could be to learn from different specialities, see how they are using it and adapt it yours. The ideas take their shape and pretty soon, a rich interactive web form that enriches it even further.

(I prefer Telegram app).

Apple health: The new age digital colonialism

Mobile ecosystems have now boiled down mostly to a duopoly- Android and iOS. Android portrays itself to be an open source but now increasingly locked down by Google with incremental updates. Apple promotes its iOS operating system- increasingly popular with the physicians and lay people in developed and developing economies.

I am not delving into technical nuances, but perceived benefits of Apple are its flawed privacy stance based on its marketing spin called “differential privacy”. Apple hasn’t shown any inclination towards having any independent advertisement networks, and this division doesn’t get any mention. It gets it’s revenues from superior hardware and locked in services (these revenues are never repatriated back to the country of origin). Apple also has controversial policies concerning foreign workers in China, and the manufactured debate about the privacy (it fought FBI) was frivolous. It did divide the tech community. Interestingly, it’s foray in China is opposite of what it does in the US. It has handed over the encryption keys to Chinese government citing the local laws (paywall).

Personally, I find that their stance on privacy as a PR stunt. When I read or hear about their foray into healthcare, I recoil with horror. My privacy stance will not be enough to oppose them, but I was alerted to a write up in Harvard Business Review, which in my opinion, was a plug for Apple.

I can only surmise that interoperability within the electronic health records is a significant pain point. I know this because, at some point in time, I had been privy to getting one for my department. At the same time, my employer was keen to move towards it. (It did not materialise- but that’s another story). The question about the data portability came in, and it was apparent that it relied on some obscure protocol which didn’t have any open source equivalent. It meant that once the company goes belly up, all data, even if exported out, would only disappear into thin air. Or become useless.

Now you can foresee similar issues with the current tech companies. They would push for their proprietary protocols because big money lies in locking up users in their ecosystems. While the initial enthusiasm is understandable (a familiar user interface to work with like messaging applications) but it’s cheerleaders are ignoring the longer and more sinister implications of this move.

When the authors dream up instances of voice assistants detailing health information, I can only roll up my eyes. Either it is naïveté or stupidity or a mixture of both. These ancilliary companies are circling in anticipation of emerging technology, to feed on spoils from the ecosystem.

Is it suitable for the patients? Let’s examine that.

Healthcare data is most valuable commodity in dark web. Primarily, it has been used to impersonate individuals to gain access to medications (further sold in black markets). More importantly, healthcare data is of paramount importance- patterns of diseases, required interventions etc. should strictly be the purview of the governments and not private companies. None of which can be made accountable. The authors have explicitly mentioned about access to the third party companies where individual users are signing away the rights. The same consumers have been signing off the terms of services for Facebook, for example, and are shocked and horrified if they realise that their data is being used for psychological manipulation. People don’t recognise the importance of “caveat emptor”. Most users are technologically averse with very little understanding of the nuances involved.

Therefore, giving up data to these companies is a bad idea. I also see thought leaders and influencers pushing this line on the social media, but then, they have a lot to gain. I guess, no one reads the financial disclosures or stakes in the companies that stand to benefit from this push.

Healthcare and technology are getting more intertwined and complex. Let the likes of Apple and Amazon be excluded from this.

Or else, this would be the new wave of digital colonialism.

Inbox Zero: Fastmail for academics.

Who wants this?

It is simple.

Sign up for Fastmail.

Have a custom domain, if you want. Or else, existing domains offered by Fastmail work fine.

Have an alias for each website. For example, if you order pizzas, have one for that. For a travel website, have another. The trick is NOT to give out your actual email id but give the alias for that particular site.

This is how it plays out. Go to dominos and have an alias like (or whatever domain you want). It will immediately segregate your email. If you are spammed for that domain, it is a matter of deleting that alias. Simple. Quick. Painless.

I have folders for all incoming mail, and Fastmail allows setting up rules to sort them out automatically. For example, if I have a newsletter subscription, it is set to flow in that folder and marked as read. Or anything else that I wish to read later.

Achieve that today!

Social Media: Falsehoods

I was alarmed to read about falsehoods about health spreading through WhatsApp. It is a Facebook-owned application which has millions of users worldwide. It is impossible to get the actual numbers but suffice to say that it is prevalent in emerging economies.

The alarm went off with an excellent article from The Wired which has chronicled the rise in Yellow Fever epidemic in Brazil and the falsehoods surrounding the vaccination. I reproduce some essential bits here.

In recent weeks, rumours of fatal vaccine reactions, mercury preservatives, and government conspiracies have surfaced with alarming speed on the Facebook-owned encrypted messaging service, which is used by 120 million of Brazil’s roughly 200 million residents. The platform has long incubated and proliferated fake news, in Brazil in particular.

The phenomenon of fake news isn’t peculiar to Brazil, but these spread rapidly through the social networks.

“These videos are very sophisticated, with good editing, testimonials from experts, and personal experiences,” Sacramento says. It’s the same journalistic format people see on TV, so it bears the shape of truth. And when people share these videos or news stories within their social networks as personal messages, it changes the calculus of trust.

If you wish to have a scientific basis to why this happens, Science published a great resource.

We classified news as true or false using information from six independent fact-checking organisations that exhibited 95 to 98% agreement on the classifications. Falsehood diffused significantly farther, faster, deeper, and more broadly than the truth in all categories of information, and the effects were more pronounced for false political news than for false news about terrorism, natural disasters, science, urban legends, or financial information. We found that false news was more novel than true news, which suggests that people were more likely to share novel information.

This is an example of a rumour cascade:

The purpose of this post is that physicians should step up their game and have an active social media presence. A lot of sane voices will go a long way to dispel myths and fears about public health initiatives.

That is the reason why I set up Telegram channel to have physician vetted information and a one-stop solution for brain tumour affected patients. We owe people more!

Why blogging is essential

When you face an empty sheet, the hardest part is to define the direction you want to give to your words.

This post was in response to a brilliant blog post on 33charts, which is peddled by an influential paediatrician. I love the way he wraps up his ideas which is both a joy and a delight to read.

I have flirted and experimented with blogging consistently over the past few years (a decade or more). I am aware of how the blogging landscape evolved.

This neuroblog was set up later in response to many recommendations by those who had been there. Blogging is the best way to be able to get your ideas out. It showcases what is on your mind.

If you are clear in your mind, you can set out to do what you wish to achieve. Hence, this blogging platform is essential to categorise as well as firm up the opinion.

Twitter is sorely limited to express both the nuance as well as context. A blogging platform only explains the background, but spoken word or personal interactions best explain nuance.

Each one of these leads to a more vibrant diversity of opinion.

(Images are subject to copyright of their owners)

Twitter for oncologists: Beyond 280 characters

I had my disdain for social media. It had been in the news for all wrong reasons. This post isn’t going to add to a growing and mounting evidence that social media is practically useless for politics because it amplifies our echo chambers and fuelling our confirmation biases. In the past few months, I have learned enough to hand hold a few tech-phobic colleagues and discover the positive side instead.

The hashtag: Twitter revolves around hash-tags. This is akin to a large room where people are discussing a topic; they come, and they leave the room. By having an open door policy, anyone can join in the conversation. It is like a large town-hall. Twitter usually lists trending hash-tags, but there are numerous third-party services which reveal global hashtags; not large enough to trend but essential nevertheless.

For example, #btsm is the hashtag for brain tumours social media. Often, patient advocates invite many thought leaders to debate and discuss on brain tumours. Anyone can use the hashtag to follow the process.

You guessed it right. The signal to noise ratio is very low, which makes it difficult to follow the conversation, meaningfully.

Username by @: They enduring symbol “@“ when prepended in front of a username, alerts the person (via notification) that he/she has been called out in the noisy room. You can either use the hashtag in the conversation (when the chats are being conducted) or individually if you wish to draw someone’s attention to their Twitter stream.

Twitter stream: Algorithms usually determine the endless “tweets” you see. Therefore, when you start out, with an empty slate, the number of tweets tend to be overwhelming as you start following various users. It happens because, Twitter, as a service, uses, the number of signals (your community engagement or number of re-tweets etc.) to determine what you are going to see there. The idea is to stay focused on what your goals are.

Direct Message: This works like an inbox system; you can restrict the users who can reach out to you.

It can quickly get overwhelming on this service. You will have to make several modifications to the way you are notified- via email, desktop or mobile clients. I prefer to get a notification only on a direct message from people who follow me. For everything else, it is switched off.

I prefer and recommend a desktop application (TweetBot for Mac). But you are forewarned. The developers do not bother to reply to your queries, and it lacks several customisation features. It gets the job done because I can filter out the advertisements on the web service. I also prefer to have a Tweetmarker service to go through the unread tweets. You can also turn off retweets from specific followers or mute them indefinitely.

Should you use Twitter or Facebook? In my opinion, both are bad. Even though the masses are there, but it represents too much of concentration of “power” in the hands of an algorithm. That’s why I prefer, the simple and straightforward Telegram. Groups work precisely that ways- you can quickly set up hashtags to organise the chats. Not many people follow this. Channels work exactly like a public broadcast. You can always set up links to discuss issues in the groups. As usual, there is a going to be a vast majority of people who will not speak up.

Closing thoughts: Twitter represents a dominant social media with numerous warts. I call it robust, only because of the sheer number of users, who have flocked to this medium. Most users are technology agnostic. People usually go by word of mouth recommendation or something which they have heard is “popular”.

It is time to take the leap of faith and contribute to the positive side of social media. As well as, try out something different and better! (Hint: Telegram)

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.