Turning medicine on its head

reverse by psyberartist
It’s Time to Turn to Research’s Most Valuable, Yet Underutilized Resource: Patients:
[Via FasterCures]
By Margaret Anderson, COO, FasterCures

A piece in yesterday’s New York Times, Research Trove: Patients’ Online Data, recounts the story of a young woman stricken by a rare pulmonary disease, and her attempts to raise money and connect a network of scientists to research her ailment. In collaboration with a Harvard cancer researcher, she launched a Web site for others facing her same diagnosis, on which patients could share symptoms and report health information.

Much of our medical system uses a top-down approach, where the doctor, informed by his colleagues, current research or, most likely, pharmaceutical representatives, tells the patient what to do or what drugs to take.

But, with the access to the internet, more and more patients are telling their doctors about their ailments. They are taking a more active role in their therapies. online tools now make it even easier.

Patients can now organize around diseases, raise money and work for therapies in ways that could actually change the entire paradigm of medical research. What happens when medicine becomes patient-driven, where the responsibility shifts?

It could be very problematic, since many people really do not want to be active. they want the doctor to tell them what to do in order to become well. Many doctors are effectively trained to respond in this way. But some people are seeking a different approach. It will be interesting to see if social media approaches can alter the current paradigm and to what extent.

Technorati Tags: ,

Scientists need to tell better stories

space stories by jurvetson
Stories Can Change The World:
[Via BIF Speak]

“Facts are facts, but stories are who we are, how we learn, and what it all means.” My friend Alan Webber, Co-founder of Fast Company and author of Rules of Thumb, has it exactly right. Storytelling is the most important tool for any innovator.


Scientists may not always realize it but they are always telling stories, providing narratives to illustrate the point to their research. This is often missed because the form the narrative takes is so structured that it does not appear like any story most of us have read.

But a story it is. It may be “Here is something no one has ever seen before and we don’t know what is going on.” Or “After years of work, we have completely delineated how this disease progresses.” Or “Here is an important piece to the puzzle that has been giving us fits for such a long time.” Or, sometimes, “What everyone else has written before is completely wrong and we show why!”

As a graduate student, I first ran across the expression, when putting a paper together, was “What story do we want to tell?” Few non-scientists really understand that every paper is simply a narrative. The best ones are incredible stories.

The structure of a paper throws many people off. There is an abstract, background, materials and methods, results and conclusions. It does not look like a standard text, it is presented in a stilted fashion and it has a structure that is unfamiliar but it actually does have a beginning, middle and end.

The abstract acts like a blurb on the back of a book, telling us whether the paper is worth reading. The background and methods act like a preface, giving us informative background.

The results are the meat of the story. Most start small, building up the knowledge as they move to data that have greater and greater ramifications. This leads to the climax of the paper, where they can state what it is they have now proven.

The conclusions often function as a denouement, recapitulating the action and providing context. It can also set up the action for the sequel.

Anyone reading Watson and Crick’s classic paper on the structure of DNA can see that it is a story. In fact, it compresses much of the normal scientific narrative in order to provide one of the classic “We figured it all out before everyone else!” stories.

It starts off with what others have proposed, continues with their model, demonstrates just how much better this fits all the data, and then ending with these words, setting up everything for the next series of papers:

It has not escaped our notice that the specific pairing we have postulated immediately suggest a possible copying mechanism for the genetic material.

Full details of the structures, including the conditions assumed in building it, together with a set of co-ordinates for the atoms, will be published elsewhere.

Science papers have an unusual format but they follow some of the standard things we see in any story. There has to a point to the paper. Why would anyone want to read the paper? It ca not just be a collection of random facts. The paper has to lead to some firm conclusions, including possible ramifications for current studies..

It must be focussed. It cannot meander through a lot of side streams. A science paper has to be kept on a very tight leash.

In every paper I have written, I have had to toss out very good experimental data, data that have no problems, because that they really do not fit the narrative that drives us to the conclusion. A well written paper focuses on the point and does not provide side trips into other areas.

The DNA paper did all this in one page. It left the detours for another time.

Most scientists realize at some level that a paper has to tell a story. But they do not realize that a scientific presentation at a conference really must do the same. There needs to be a beginning, middle and end. There has to be a point to it all, providing context to the data and its place in Nature.

Too many scientists forget this. They provide no frame for the discussion, leave needed background out and dump in all the data that was not fit for the focussed needs of a papers. Thus, most scientific presentations are unfocussed and boring. No structure and no real point.

The best presentations, the ones we all remember, use the data to provide a narrative, to help us understand just what story they are trying to tell.

We all tend to learn the needed tools to write a good science paper, incorporating the idea of a proper narrative. But few are provided any real tools to apply to presentations before a group of people. Most never learn the proper tools and simply give boring talk after boring talk.

Learning how to tell better stories, not just write good narratives, is something al researchers should learn how to do. But, whereas there is a real premium put on writing good papers, there is little pressure to speak well before a group.

That is why the best places to be at scientific conferences is usually not at the presentations but at the bars and pubs frequented by the conference goers. We get the real story there because every human being knows how to trade stories with others, even when the group is just a bunch of researchers.

Now if we could just get more researchers to adopt this approach to their public speaking trips, we might affect some real change.

Technorati Tags:

Tell stories

storytelling by Rusty Darbonne
Explainer Tip: Remember the Curse of Knowledge:
[Via Common Craft – Explanations In Plain English –]

One of the books that I read just before creating our first videos was Made to Stick by Chip and Dan Heath. More than almost any other, this book helped me see new opportunities to present ideas in a unique way. One idea from the book really stands out – it’s The Curse of Knowledge <insert scary music.>

We’ve all experienced it – in talking to a doctor, an engineer or academic, we get lost. Despite their best efforts, they explain a topic using words and examples that don’t make sense to a beginner. These people are suffering from the Curse.

The idea behind the curse of knowledge is that the more we know about something, the harder it is for us to explain it to someone who knows nothing. We have a hard time being able to imagine what it’s like not to know. For example, think about a lawyer who spent his life reading and writing legal documents, talking to lawyers all day every day, etc. When you ask this lawyer about tort reform, you’re likely to get an explanation that confuses you more. This person knows too much to answer your question in a language you understand.

We’re all guilty of having the curse. We all have something in our life that we know very well – perhaps too well to explain easily. The key is know that the curse exists. To be able to recognize the challenge before you. Here’s how:

Consider every word. Sometimes a word that is completely natural to you can doom an explanation. For example, let’s say you’re a financial planner and you sit down with a young couple and they seem to get everything you’re saying. Then you mention “amortization” as if it were any other word. You use it every day and the people around you do too. It may seem that amortization is perfectly normal. But it’s not – their eyes glaze over and the explanation takes a turn for the worst. You have the curse.


What Common Craft does is tell great stories. This is the easiest model for communication between diverse communities that may not have a common language.

Communities tend to develop language, slang and even stories that really only promote communication within the group. Jargon is used to separate those in the know with those who are outsiders. It can be used to tell who is in and who is out.

If an organization want to interact, if it wants to collaborate, it has to destroy jargon, it has to create common stories that permit understanding to take hold.

Most of what we deal with every day is really too complex to easily discuss and evaluate without years of experience and lots of jargon. In fact, few people actually think like that. They create heuristics, rules of thumb, that permit them to deal with complexity.

in many cases, these heuristics can be exemplified by stories and metaphor. When people view their speech as stories, they often make the sort of simplifying changes that are needed for effective communication with those outside the group.

Because stories often are used to communicate very complex ideas but in terms that anyone can understand. Watch any Common Craft video.

Technorati Tags: ,