Achieving the digital detox.

Over the past few months, during my interaction with various people on Twitter and offline, I have been hearing about the information deluge that makes it impossible for them to acquire new skills. We indeed have limited 24 hours!

I wouldn’t be able to give a blow by blow account of how I manage things, but I have had to stick to certain good habits that have made things more comfortable for me. I will mention a few services below that make it incredibly easy to flow past the flood of distractions.

1) Mobile phone:

This is the biggest annoyance! I am off the social networks on the device barring Telegram. More on that later.

Twitter is accessed only on the browser. No dedicated applications exist. All notifications on the device are blocked except for text messages.

Telegram helps me to mute all conversations except people whom I deem essential. I have a lot of channels where I consume content passively. No mainstream social networks like Facebook or Instagram for me. They are antiquated because I cannot control them.

I also don’t have a fear of missing out. My associates either call me or text me if needed. Android has become better to manage notifications in recent times. I don’t have any experience with iOS, but I remain convinced that Apple iPhones are merely iPods with a calling facility.

2) Email.

I had mentioned this earlier too. I use Fastmail because I find there is inherent value in paying up for the email. I use a lot of aliases whenever I sign up for the service. It helps to signup with a unique email address. For example, for Dropbox, my alias will be dropbox (at) FastMail dot com (it is a hypothetical- just for illustration). Therefore, if any spam flows into my inbox, I know where is the leak from. All I have to do is to delete the alias.

This simple hack has served me well over six years, and I am happy to stay with this service. Mainstream email applications like Gmail or Yahoo are useless.

I have also created extensive rules which directs the email in the trash. It helps to clean up the clutter at the server itself without manual intervention. For example, all newsletters go to trash directly. Some of them are automatically marked as read and stay in the inbox- I scan through them when I get time. When they are marked as read, I don’t get a notification. Therefore, can easily stay focused on my work without being distracted by the flow in the inbox.

3) Password Manager

1Password is the password manager that is my life saver. It generates unique passwords for all the websites. It is a paid service, but good cloud sync helps me to sync it with my Android device as well. It eliminates the need to remember unique passwords.

4) The use of Telegram chat app

Telegram remains the only way to stay connected with any semblance of “social network”. I use a combination of groups and channels to stay informed. Channels work as public broadcasts. Any specific information I need is transmitted to it. I use bots (both paid and free) to achieve the effect.

For example, I use the IFTTT bot to work with the RSS feeds to populate the channels with the Pubmed content. If I need to track, say the latest publications in the development of MR-LINAC, I don’t have to visit the website manually. By use of booleans, I can filter the content, generate the specific RSS feeds which pipes it elegantly in the channel via IFTTT bot. Likewise, I use junction-connection bot and Feed-Reader bot for different purposes. I pool in information from all specific channels I need to follow into one omnibus channel so that I don’t have to deal with a multitude of channels. I do this by using junction-bot on Telegram.

Feed-Reader bot helps me to tap into various other social networks. For example, I have a specific channel devoted to cycling. All posts from multiple Instagram accounts flow in the channel. It helps me to keep track of the sectoral development. Likewise, I developed a channel for journalists on Telegram to keep track of telecom sector and clean energy. I also have a dedicated art channel that I helped to make for a friend. That collects all impressionist art, beautiful nature pictures and graffiti! None of the posts is done manually.

Focused groups require extensive group management. I recommend using Combot because it comes with a beautiful web-interface. Although the community bot management has introduced a paid plan, it is free for groups that have up to 100 members. The bot deletes specific stop words automatically along with other nifty features like muting users. The bot also keeps groups free of spam messages. Therefore, the groups stay efficient, productive and on course. It is unlike WhatsApp where users start spamming others without any rhyme or reason.

This above may sound onerous, but it helps to maximise the efficiency gains. As long as you are not distracted, it helps to keep focused on work.

In the busy schedules that we keep, always find time for solitude. That is the most critical period to stop and reflect on your goals.

Digital tools need a constant refinement. Hopefully, I will update this in the future.

(Images are for representational purpose only. This blog post is not intended for any commercial purpose).

RANO: Working plan for the use of patient-reported outcome measures in adults with brain tumours

Lancet Oncology, 19 (2018) e173-e180. doi:10.1016/S1470-2045(18)30004-4

Why is this paper important?

It is because there are no reliable means of patient-reported outcomes (PRO). These metrics are an essential part of monitoring the course of treatment as well as quantifying the impact of the same. For years, we have been relying on metrics like Mini-Mental State Examination. I have found that examination to be sorely limited because it is full of biases and highly dependent on the cognition/mood status of patients. There has to be a more robust metric.

Hence, the great blurb from this paper:

The first step would be to provide an overview of the guidelines of previous initiatives on the collection, analysis, interpretation, and reporting of PRO data

It is the step in the right direction because of it an acknowledgement of what we don’t know. I have attempted to involve formal psychometric testing, but it usually takes hours and have limited clinical utility. The existing tests have undergone validation in different “trials” (most of which are either single author led studies or institutional trials) leading to much confusion. Do we have a standard way of reporting them?

Not yet.

It leads us to the second step.

The second step would be to identify what PRO measures have been applied in brain tumour studies so far. As mentioned, several PRO measures are already used frequently (e.g., MD Anderson Symptom Inventory Brain Tumor Module, Functional Assessment of Cancer Treatment-Br, EORTC Quality of Life Questionnaire C30 and BN20, and the Barthel Index)

Content validity should also be culturally sensitive. What applies in one geography doesn’t translate in another part of the world (which adds to the complexity of the task).

Therefore, I feel that the third step is the most crucial question in patient-reported outcomes.

The third step would be to establish the content validity of the existing PRO measures identified in the second step. Are all essential aspects of functioning and health for patients with brain tumours covered by these instruments?

The next excerpt nails this in the right direction. It is not the patient defined outcomes alone but has to be validated by physician scoring system as well.

How is this going to shape up?

This framework refers to a patient’s functioning at three distinct levels. The most basic level is a patient’s impairment in body function, such as muscle weakness. Assessment of these impairments can be done with PRO measures, such as a symptom questionnaire, but also with clinician-reported outcome measures such as a neurological examination

Last but not the least is the psychometric properties-it has to prove its reliability as well! This, of course, applies to reproducibility across different domains.

The fourth step is to identify the psychometric properties of the detected PRO measures. How valid and reliable are these instruments for patients with brain tumours

To achieve this goal, the committee proposes to use COSMIN taxonomy and defines it as such:

The COSMIN taxonomy distinguishes three quality domains: reliability, validity, and responsiveness, each of which includes one or more measurement properties. Reliability refers to the degree in which the measurement is without measurement error, whereas validity refers to the degree in which an instrument truly measures the construct intended to measure. Responsiveness refers to the ability of an instrument to detect (clinically relevant) changes over time.

These criteria will help to shape up the course of treatment beyond the survival outcomes and focus on preservation of quality of life.

More on that later.

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.