TED Talks - Reinvent Research Funding Through Storytelling lyrics

Published

0 112 0

TED Talks - Reinvent Research Funding Through Storytelling lyrics

[Larry Lawal] When I was 17, I distinctly remember the keynote speech at a scholars symposium given by an astronaut. I recall him saying how "perspective shifts 230 miles above the Earth. Looking down from the dark expanse, the lines we artificially draw between nations and people fades away. The importance of wars, politics, and divisions shrinks. And if we adopt some of that perspective gained while in orbit, we, together, can focus and develop treatments and cures for some of the big problems facing humanity.” Specifically, he talked about how difficult it is to develop d** for cystic fibrosis, cancer, and a variety of other diseases here on Earth; and how growing protein crystals in outer space under zero-gravity conditions could potentially help us design new d**. That talk convinced 17 year old me to attend this university and work with Dr. DeLucas for 3.5 years. It was an amazing experience getting to work in the lab of one of my heroes and it led to many accolades; However, I realized a disturbing truth from that time and from the last 9 years of conducting medical research. That is, research funding is broken. And if we don't reinvent research funding, our collective health will decline dramatically in the coming decades. Much of that research avenue I pursued could not be directly continued due to government funding cuts, and this is the shared story of countless researchers at academic centers across the nation. When I was 11, I overheard my mom in her room talking on the phone. I tiptoed over, pressed my ear against the door and listened in. The conversation was a prayer request to a church member. It turns out that my mother was diagnosed with cancer, and was undergoing treatment, but hid it from us. When we later talked about it, I bombarded her with many naive questions given the little science knowledge I had then. But underneath those questions, lay a desire to fix or to ensure everything possible in the world was being done to make her better. In the end, she was lucky and her treatment went well. However, there are 30-million people in US with 7,000 different rare conditions, of which less than 5% have effective treatments. Many of these people have families, friends, and children who like me just want to see their loved ones get better. Last year, the NIH rejected 82% of new grant applications. That's roughly 47,000 ideas or that's 47,000 opportunities that could lead to breakthroughs that could help people like my mom. This disproportionately affects young scientists who are fleeing research at an alarming rate. This picture captures the grim state of current science funding today, and we won't fully realize this impact for decades. If you go back to the 19th century, you'll see that medical research was often funded by individuals, sometimes even to the point of raising ethical questions. In 1822, Alexis St. Martin was accidentally shot with a musket at close range. When the hole in his side healed a stomach fistula formed. He allowed Dr. William Beaumont to research and literally watch the process of digestion by dangling food on a string into his stomach, then later pulling it out to observe to what extent it had been digested. As you can imagine, the only funding of that project came from Beaumont's own pocket. In the 1920s, Alexander Flemming asked a hospital administrator in England for a modest amount of funding, around 200 pounds, to help pursue research on Penicillin. The response was “we do not have money to fund your hobbies”. After Louis Pasteur discovered a rabies cure, friends and family, poor and rich, postmen and policemen all donated money to fund scientific research efforts at his Institute. Now, imagine you're a scientist today. You have an idea you think can save lives, so you write a grant to the NIH, but you have to wait months to hear back. Even if you're lucky enough to get funding and publish your findings in a peer-reviewed journal, you hope for pharmaceutical companies or investors to pick up and do the follow on work; except, they often don't pick up and do the follow on work. I imagine what would have happened if the treatment that helped my mom was left sitting on the shelf undeveloped in a university laboratory or in a researcher's mind simply because it was deemed too early stage, risky, or expensive. This is what we knew about the human body in 1497 compared to 1543. If one looks a little more like a skeleton than the other, there's a reason for that. The one to your left is based off Dr. Galen and comparative anatomy of a creature called the Barbary ape. Andreas Vesalius came later and changes all of that by doing direct dissection off of actual cadavers. Here's the key. Looking back on the history of medical research, progress, and innovation, the technologies of the time have always defined our science. In other words, our ability to advance medicine never outstrips our ability to communicate and share what we know. Prior to 1543, the printing press was very embryonic & the engravers' art was pretty crude. For monks in a scriptorium, handwriting 30 man*scripts would be considered a lot, but in 1543, advances allowed thousands of copies to spread over a wide geography in a short period of time. In a sense, it was the communication tools that drove our knowledge and transformed the paradigm from comparative anatomy to direct dissection and observation. Today, crowdfunding projects have raised over $972 Million dollars on the most popular platform. The explosion web 2.0 and social networks has enabled anyone to make a gadget, game, music or movie a reality. We no longer have to wait for studios, corporations, banks, or investors to give approval to make what we want. If you grew up watching Scrubs and are a Zach Braff fan like myself; that's a good thing. So the question is: if the Internet can be used as a connector, where like minded communities can a**emble in the cloud, pool resources, and create, could the same be used for potentially life saving medical innovation? I believe the answer is yes and that crowdfunding can reinvent how we conduct research. We are now in an entirely different era and an entirely different age in which we have the opportunity at our fingertips to instantly connect the needs of the medical researcher with the interests of the general population who is most likely to benefit from it. A researcher can go online, post a short project video, state what he or she wants to use the money for & hopes to achieve. And those who care, can help fund it. How many of you have been or know someone impacted by a medical condition? and wouldn't you want to give directly to cutting edge research that may otherwise not get done? So the question is: why hasn't this been done? 8 months ago we set out to find an answer and see whether we could help researchers find funding for their early stage projects. After spending months learning, coding, interviewing life science investors, pharmaceutical companies, and researchers. We've come up with solutions on how to improve biotech funding, how we can address issues like peer-review, meaningful levels, and waste. However, it was not until I sat in the office of a scientist who needed funding for a novel project and he shuffled through a stack of papers behind his desk, swiveled around in his chair, just to plop a 15 page grant in front of us saying “go crowdfund it” that it became apparent that we totally missed the ball. You see, as scientists, we are trained to focus on the details of methodology, procedure, & execution… the how. Unfortunately this often comes at the cost of why? Why does it matter, what does it mean to someone outside your field, who does it affect, and why should you or anyone care. That communication was largely missing. Evan Williams, co-founder of Twitter, once said, “We think the Internet enables you to do new things, but people just want to do the same things they've always done." Crowdfunding isn't anything new. It's not about monetary transactions or complex financial engineering. It's an innovation in something we have always done, which is communicate through stories. Since mankind first sat around campfires, stories have been used to unite ideas and emotions. Stories can get people to the understand the problems researchers are tackling, involve them in the process, and motivate them to help find solutions. Studies show that our brains react in a surprising manner when we hear a story. We, in fact, experience events as if they are happening to us or if we are really there. I believe sharing the unheard stories of young researchers, future Nobel winners, and the modern-day Einstein's is an unprecedented opportunity for people, themselves, to become partners in the medical research process. This isn't about funding games and gadgets, it is about funding people, ideas, and experiments that will save lives and improve our collective health. Stories can give hope to the patients left waiting for breakthroughs. Stories can prevent research from being an agenda item to which politicians can say “Sorry, it's not important to this year's budget”. Stories can fight anti-intellectualism and the complacency that stifles progress and innovation that our world desperately needs. Stories can reinvent medical research by rekindling the wonder and interest in science and technology in the next generation. So what can you do? I believe that if only we knew and shared the stories of the discoveries being worked on, we could begin to reinvent research funding and tackle the huge problems facing humanity here on Earth. Some of you currently have loved ones with diseases that cannot be cured at present, or may be facing health challenges of your own. But look to your left, look to your right, and look inside yourselves. You can now be a part of the solution. While a few dollars isn't enough to find a cure, it's a first step, and one we can all finally take together.