Can you rely on Twitter?

Of late, my engagement with Twitter has decreased as my cynicism about social media has resurfaced. I have always held the belief that Twitter is, at first, a link-sharing service. The 140 characters and URL shortening services came out of that. However, they have actively tried to increase engagement.

It doesn’t happen like that. The rates of engagement (defined by clicking on the shared links) are abysmal. It means that anyone given the user is at the mercy of algorithms. Any change in that and the discoverability falls to zero.

The Twitter timeline is unsuitable for orderly consumption. I had mentioned before, and I reiterate- it depends on how algorithm ranks your association and engagement with other users. I have tried, with varying levels of success, to participate in the “live-tweeting”, but the heterogeneous nature of discussion doesn’t add structure.

I have bet my horses on Telegram instead. It is growing, without any direct marketing. The groups remain functional by use of bots which automate policing the channel. It ensures that no one misuses the allotted privileges to speak up. I have been managing a group recently which makes it easier for disparate users to discuss issues cohesively and understandably. Sharing links, inline players and in-app browser (or instant view) is a huge plus.

If the bottom line is efficiency, then yes, Telegram wins hands down. Twitter is becoming a mass of super-added mess. I use the offline Tweet clients because the web-version has a subpar experience. Besides, it tracks using cookies and other means.

I have tried (valiantly!) to convince users to switch gears. Staying online makes it worse for identity thefts. People implicitly trust social networks, but it is a decision that is fraught with danger.

Twitter is in search of a business model that would pay up for itself. As an ad-supported service, the users are the product. Despite the real-time insights, Twitter has been dumb enough not to be able to capitalise on the generated data. Either way, despite the promises of being able to provide a medium of discovery, the real fun happens in closed groups where we chat up, in detail, about issues that are close to heart.

The new promised updates to Twitter will still languish and leave you at the mercy of nameless, faceless algorithm. Think about it.

There’s still time to change gears.

Goals of research

There has been an outpouring of dollars in basic molecular research. Many clinicians have joined in with their labs to push for “clinically relevant research”. It is evident that there would be a lot of duplication and overlap between it.

For example, look at IDH gene in the pathogenesis of gliomas. We know it carries a prognostic significance. We also know about the molecular pathogenesis. How does duplicating the research across different labs helps us or makes us any wiser?

The answer lies in the pharmaceutical business goldmine. Loath to spend on basic research in molecular pathways, the research, instead has been farmed out to a network of labs. It is easy for anyone to form a company and then sell out by being acquired. It is excellent for research ecosystem as it brings about new innovative ideas, but there are some serious issues here.

Public funded research gets outpriced for the end users who have contributed in no small measure to the same. They need to become more aware of these repercussions. Shrinking federal grants for public funded research means that there is no adequate oversight and auditing of the labs that are doing the same thing. These are potentially very high stakes, and patent awards can make individuals pretty rich.

I agree that these are generalisations and that this opinion isn’t set in stone. I have based the above assertion on my reading of the situation as well as verbal accounts.

What is urgently required is a partnership at all levels. It is to focus on one idea that has the potential to work in brain tumours. Pool in resources, under legal agreements, to work on the different aspects of the same problem. The idea above is more akin to a hub-and-spoke model of research. The goal is the identify molecular pathway and understand its implications for radiation therapy.

Let’s say, hypothetically, IDH gliomagenesis is the new pathway discovered. One team to work at a molecular level to identify potential inhibitory points, other to identify molecules that bring about this change. Another side to study the effect of radiation therapy and the pathway. Aggregated results would avoid duplication and overlap and lead to faster translational outcomes.

The problem is that they end up leaving radiation as an after-thought. It should change.

Size does matter

The size of clinical trials has now become a raging issue. I came across it on Twitter, and I’d like to put in my perspective to it.

The Wall Street Journal article presents a reasonably nuanced view about the need for trials. What it leaves out in the process is that some diseases like those involving brain, because of their relative rarity, would always need a clinical trial. Likewise, for common cancers arising in breast and prostate, the opinion for long-term clinical trials is divided because it is a significant public health problem.

The treatment protocols for brain tumours like gliomas hasn’t changed much in the past 15+ years. For even rarer diseases like CNS lymphomas, the role of chemotherapy has expanded manifold. Patients present to different facilities with varying standard of care. Not everyone has access to the “research facilities”, and especially in developing countries, that conceptual framework is non-existent. The treatment protocols are often the trial and error in what “fits” in with the Indian subset of patients. It is true primarily because out of pocket expenditure is a significant public health issue.

Now comes the emerging role of “personalised medicine” where the opinion for big or small trials is even more sharply divided. What everyone secretly agrees but never speaks out in the open? It is more important to understand the need to publish negative trials. The focus of the oncological community is towards the big bang positive studies; especially for the “blockbuster” drugs. These are often intricately linked to prevailing stock prices. There are perverse incentives as well, not to take the financial risks. It is the pharma companies that decide on “treatment protocols” and the “standard of care” where conflicts of interest are given short shrift in the protocols. That is the reason why I insist on public funding of trials where a leeway has to be made to fail. Previously, I have also argued that “personalised medicine” is way too much in its infancy. We are only nibbling at the outliers and nowhere near the core of the problem.

It is also incredibly naive to assume that if a company is offering an “unrestricted educational grant”, it has no say in the outcomes. It gets them a seat on the board to be able to influence the reports indirectly.

So does size matter? More extensive trials, are time honed but require immense resources. I strongly feel that hair-splitting in current treatment options offers no means to an end. Instead of a clear focus on the outliers (like the drugs), protocols need to include radiation therapy as an inherent component of treatment.

Translational medicine needs to become the centre-stage, and public funding should avoid a substantial scale duplication of work. It comes with its caveats.

My Twitter journey so far

It is an honest confession about what I have been able to achieve and put it in perspective. Is the social microblogging website, beneficial?

  1. I have been lucky to come across many excellent individuals! Medical Physicists, Radiation Oncologists and the fraternity which gets together and deliberates on matters of mutual interest.
  2. I had to use a lot of muted words because most people don’t realise that Twitter is meant for “manufactured outrage”. It is lazy person’s means of “activism”.
  3. I follow many accounts, but some of them are muted because their tweets add no value to the discourse here.
  4. Some Twitter users are great. They read whats on their platter, but Twitter sorts out interaction based on algorithms. It means you are likely to miss out on a lot of important things. Your likes, re-tweets or other signals are factored in what you ultimately see. It isn’t educative nor informative.
  5. I participated in my first virtual conference for ESTRO. It was an enjoyable experience, and I have written and shared my ideas extensively. If you wish to factor in Twitter as part of an interactive platform, you need to have a coherent strategy. A generic hashtag adds little value to the overwhelming noise. I would, on any given day, have a Telegram channel, instead.
  6. I am dismayed by the constant barrage of advertisements by many organisations. It is good to promote diversity of thought; however, it is clear that these accounts have been outsourced to different agencies. It appears phoney; as if they are drunk of kool-aid. My bullshit filters typically go up at the very thought. I am not naming them, of course, but it gets my goat. Likewise, for a respected “physician-scientist”. It may be acceptable to make political statements, but it is like mixing wine with water. The result- academics+politics doesn’t make any sense.
  7. Gender politics on Twitter is too stupefying; I am gender neutral (if that is the term) and I prefer to see individuals as such. There is no meaning of gender for me (as far as academics is concerned). Using your Twitter account to wash your dirty linen in public (because you have a specific gender) is labelling your back with the tag of “stupid”. Ultimately, it is your choice as to what you wish to achieve with social media. I usually prefer to stick to a personal account on Twitter or better still; I prefer Telegram.
  8. The click-through rate for articles is abysmal. If you wish to see an improved version of click-throughs for the posted links, you will need to have a large number of followers.

Has there been any luck with getting people to switch over to Telegram? Nope. Nada. Zilch. It is because of my tacit understanding as follows- Twitter as a medium for beginners is intimidating. Many users prefer to stick with the known than to start with something new. It is not laziness, but everyone has a motive to be online using Twitter. Some wish to have a more significant exposure; some users want to interact with peers, some want to express outrage or crib about life’s not fair. There is no one reason. Telegram is much more personal compared to Twitter. I have a couple of groups and channels with me on Telegram. It is good to spend time by consuming content passively. Groups allow more fine-grained control and better-nuanced interaction. And the recent moves by Twitter to force users to access it through web-alone is a stupid move.

Twitter is a bitter-sweet experience. Yes, the constant stream can be tiring and distract you cognitively but it is fun in parts. On the flip side, you end up meeting amazing individuals and people from different departments across the world.

The myth about tissue donation

 

Many organisations are involved in raising awareness about brain tumours. It is essential because of the relative rarity of these diseases. One also requires in-depth research for finding the elusive “cure”.

A diagnosis of brain tumours often lurches sufferers from anxiety to nearly suicidal ideation that often makes them do desperate things. Alternative therapies, herbal remedies etc. become the order of the day, often aided and abetted by the Internet. The practitioners make tall claims which have no scientific logic.

The worst off are the snake oil businessmen, often under the guise of taking your tumour samples. Now, this is a very contentious issue, and I will try to make it as simple as possible.

Research involves tumour tissue to do molecular experimentation. It would unravel the molecular pathways that are involved in the final clinical presentation. Once you sign away the tumour tissue, you also sign away the rights for any “commercial exploitation”. The devil lies in the details. I feel you are unlikely to get your money’s worth for the tumour tissue you have donated. Any “blockbuster” drug that might come off it will be the sole property of the organisation that took the tissue in the first place.

Things, of course, are not so simple. It is a very generic statement, and I am sure exceptions to the rule apply.

So should you give away the tumour samples? Yes, by all means necessary. However, not to the organisations but to respectable Government institutions where the public funds’ research.

What will be the benefit of this move? Whatever new research yields the outcomes, it has to be placed in the public domain which would make it easier for scrutiny and more importantly, for reproducibility in other geographical regions. There is no point in locking up the innovation. If the organisation pledges to do the same, then all the better!

There’s one more major concern- data privacy. What would happen to the data if the organisation and the company behind it go bust? In case of Government organisations, the ultimate control will remain in public hands.

I strongly feel that calls for tissue donation need to be understood in the right context; before you sign away your rights for a great common good.

Twitter: Towards a slow spiral of death

Twitter is getting desperate after an increased focus and scrutiny of its actual number of users. While they use metrics like users who were online in the past month, Twitter knows that it is a sinking ship.

There was a lot of hoopla about Twitter making its first profit after consecutive losses. However, it seemed like a flash in the pan. It is yanking off the API’s (third party services which connect via desktop applications). It wants web-only services so that it can serve up “personalised” advertisements. The daily engagement with the service is declining.

It is a worrying trend. While the BTSM practitioners have linked and bonded over this microblogging service, it is easier to get lost in the din of rapid tweets which makes it impossible for any coherent discourse. I have seen posts from institutions- pictures shot from the OT about the cases that they have done. Why this kind of marketing?

The impact of social media ought to be real- like reaching out to potential donors, for example. However, that individual tweet is decidedly less likely to be seen by a specific person. Re-Tweets or Symplur impressions hardly have any bearing on the impact of “tweet”. It only states how many people could have possibly seen. Were they the correct target audience?

A vast majority of the population isn’t aware of nuances of Twitter which can be overwhelming. Mobile interface, like Telegram, needs to be explored in earnest. It should be linked to all the Telegram links (like URL’s). That is also a safe, secure service which doesn’t track you, unlike Twitter.

My rejection for PhD

I have been applying to get into academia for quite some time. I have been rejected for all offers on board without assigning any reason to me!

I am not naming the “latest rejection”, but I feel that documenting my failure would help me to keep things in perspective. It is amply clear that the selection committee had not looked into this blog, social media presence, my publications, present acceptances for international conferences and the like.

While they want a “team player”, it is apparent that socio-cultural contexts and issues would play out in adapting to the new scenario. If I were in their shoes, it would be more comforting to deal with the knowns than the unknown. Letters of recommendation hardly capture the interest and motivation of a candidate. Those letters are stuck in a time-warp. They were a reflection of how I was a student or a professional then. How I am now, is a different story altogether.

It is usually the professional networks that lead to word of mouth recommendation and hence landing the required fellowship or job.

I wouldn’t consider this as a loss under any reasonable set of circumstances, but I was sure that I fulfilled their requirements in more abundant measure than they had bargained for. Since this was a call from international prospects as well, I am sure they must have been able to zero down to a more competent candidate than myself.

I genuinely wish them good luck.

I had earlier spoken out Twitter as well- it is persistence that is required to push for a career in neuro-oncology. It is not easy to deal with shortened life spans, familial expectations and their anxieties. However, the work remains incredibly exciting with vast potential for translational research. Many drug combinations with radiation therapy are being tried out with rapid accruals- yet I stay circumspect because alternative radiation sensitisers and fractionations still need to find their ground on stronger footing.

Failure is only temporary, and I am sure I am going to land in academia, someday because I crave for an intellectual challenge.