Biomedical research, outcomes and survivorship

This post was the result of being tagged in an interesting discussion on Twitter about survivorship. I want to give in my viewpoint.

Survivorship isn’t just about a hard clinical outcome. It is about the functional autonomy of an individual. There are various issues tied up here; it wouldn’t be appropriate to discuss survivorship issues in isolation. I would, of course, take the example of brain tumours per se and weave in the narrative for various interconnected problems. I have been thinking about it for the past two weeks and here’s my observation.

I was lucky to attend Paediatric Neurooncology conference- which was my first trip to States. It had been a fantastic experience; great organisation as well as well attendees from different parts of the world. However, one thing stood out- the predominance of biomedical research. I wouldn’t hesitate to call it as vanity research because it is an arms race to practically nowhere. We have expended billions of dollars in hair-splitting pathways and identifying newer targets, but as an opportunity cost (investment versus tangible outcomes) it is a downward spiral and a wasted opportunity. I am not advocating less of research but one that has measurable practical results.

Let’s look at survivorship from three examples. Meningiomas, Medulloblastomas and DIPG (as the extreme). Meningiomas are mostly indolent but are considered “curable” after definitive surgery followed by an indication for radiation therapy. How and why the need for drugs has come in? What proportion of patients needs it? Are they effective? And if the disease is aggressive and progressive, when do we call it a day and suggest best supportive care for the patient? The hapless patient would need dependent care (based on what neurological functions have deteriorated). How do we define survivorship here? Have we made the patient functionally autonomous or helped the patient to adjust to the disabilities?

The “middle rung” (as I would call it because it has a decent prognosis) is medulloblastomas. Elegant research has divided this into various subtypes with the promise of “de-escalation” of treatment. How much, do we know that “less is less” and not “really less” of radiation therapy? Chemotherapy, from the classical radiobiological constructs, eliminates only the most active cell populations but still, the “spurters” remain in the cell pool. Reducing the radiation dose will, in all probability, really compromise with the eradication. The “myth” of radiation-induced side effects continues to this day without really accounting for the long-term neurocognitive effects of chemotherapy.

What is survivorship in this context?

The last but not the least is relative rare diffuse intrapontine glioma. This diagnosis is universally fatal, and despite an intense outpouring of research, the outcomes haven’t improved. They have drilled catheters to deliver drugs right at the source and have claimed “success”, but the overall scenario remains bleak. What is survivorship here for DIPG?

Hence, either way, you look at it, there are no easy answers. The spurt of biomedical research (often cornering the most significant resource) needs to be tempered with the realistic expectations of the pharmaceutical industry (that funnelled research into practical, actionable targets). There have been clamours, of course, for a “close collaboration” between the industry and academia but everyone is aware of the pot of gold. An actionable mutation followed by a drug and patent protection for about ten years is equal to profits. Insane profits. But, how has survivorship improved? Instead, we have newer metrics to measure “survival” like “progression-free intervals” which has no meaning because the disease is always present.

I feel that it is important to pay equal importance to the emerging role of technology and patient support. Like the innovative use of chat applications, the emergence of bots and various platforms that can make life easier to adjust with disabilities. Patient support is an ignored criterion that could get a better impetus and more funding to make lives more meaningful.

The central question remains- when to introduce “palliative care” and “hospice” in the evolution of the disease. These two questions determine the meaningful survivorship.

As from the preceding discussion, it is not easy to quantify survivorship. The goal of research should remain improvement in population outcomes. Cancer aetiology points out towards mostly preventable causes- air pollution, smoking etc. What are we doing to improve our score in that direction?

Last but not the least is cancer prevention. Sadly, it is not relevant for gliomas save for the fact that mobile phones are “probably” a risk factor. That opens up another can of worms because industry-sponsored research fails to show an association between exposure and disease. Oh well, I am not surprised there.

Lets put things in perspective. We are trapped in our web of confirmation biases. Let’s focus on better ideas (pardon my cliche) for “cross-pollination” of disciplines. Radiation Therapy is curative and is the most critical determinator of survivorship.

How to deliver a scientific talk: Or not kill your audience

 

I stumbled on this gem from Twitter! I am sharing this in entirety because I feel that it needs to be shared to a wider audience.

I am not having any claim to fame as far as the public speaking is concerned but I have had my fair share of run ins. The author is right about being able to engage the mental attention and it is a difficult task. Nevertheless, there are some common sensical pointers here that I’d like to share from the embedded document (please feel free to download and share) Thats one reason I usually dread going to the conferences. Its only because of the boring presentations (and sometimes tasteless food).

Be visual!

I prefer to have the pictures do the talking but if they are done to death, it makes for a disaster.

The goal is to have a visually streamlined talk where the audience is so engaged with your presentation that they forget you’re standing in front of them speaking.

Highlight the points and learn to do it!

The bulleted points! They should be banned.

Kill clutter. Remove text. Complete sentences are to be banished from your talk.

Be nice to your audience!

Many times I have seen the speaker pointing the laser as if to highlight the importance of a bullet. The pointer goes up and down and this makes for a perfect recipe for disaster because subconsciously, the audience is following the pointer.

Try not to use a laser pointer. They’re a crutch for you and are distracting to your audience. More to the point, there’s no need for one if your slides are properly designed (uncrowded).

No suspense! This is self explanatory

People really don’t like suspense if they’re not already invested in your talk, and they have bad memories. So tell them the main answer before going into the details. Rather than try to figure out where you’re going, they’ll be able to concentrate on the finer details of your talk.

Keep it brief!

Really! This helps.

Keep methods brief. Most don’t care about methods, it’s a distraction from the story. Provide enough detail that they know what you did and have some confidence that you know what you are doing.

Finally; last but not the least!

Knowing your audience is the most important thing. You need to be able to tailor your talk depending on who is going to listen to what.

Know your audience. Present something that they will enjoy, for scientists this usually means tailoring the level of technical detail (and amount of introductory material) to your audience.

I hope this little list helps!