Wiki for brain tumour charities

Early this week, I had announced that I would develop a Wiki page for collecting the links to all brain tumour charities. However, this is a herculean task indeed.

If I were to use the existing resources at Wikipedia, editing the webpage is an onerous task. They haven’t migrated to a simple modular structure like in a blogging template nor do they allow any specific linkages with applications on the desktop. The only way out is to use a browser. Their interface would scare the most battle-hardened veteran as well.

What is the way out? Telegram again comes to my rescue. The way out is straightforward.

1) I have created a submission bot (braintumourbot) that will interface directly with a private group.

2) A standard format for submission can be evolved.

3) I will be using specific hashtags. For example #US for North America, #UK for Britain, #AUS for Australia and the likes. Any user keen to look for information under the head will be able to locate it by just clicking on the hashtag.

4) #LON under London will display the charities based there. If they a website address and a Twitter/Social account, it will be listed accordingly. This consistent storage of information will help me to organise the information quickly.

Telegram does offer the speed and reliability with added security for the users. I think this is the best way forward to crowdsource the information.

I have ideas for a dedicated mobile application as well, but that would require yet another mobile app; resources can be utilised to make things efficient. I remain sceptical about either a website or the apps.

Let’s see how this experiment grows!

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.

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.