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.