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Thomas Goetz: It's time to redesign medical data In his TEDMED talk, Goetz — who has a masters in public health and wrote the book The Decision Tree: Taking Control of Your Health in the Era of Personalized Medicine — spoke about what to do in the face of an endless labyrinth of medical data: Design better. In his talk Goetz shows a fake pharmaceutical ad and its accompanying FDA information. It’s indecipherable. Goetz points to the eye-glaze-inducing data, frustrated: “This is one of the most cynical exercises in medicine. … This is a bankrupt effort at communicating health information.” Goetz shows how Wired asked three designers to make over unintelligible lab results. Presto: The lab work makes sense. An important aspect of his vision, Goetz explains in his talk, was not only to visually transform medical data – a challenge on its own – but to help patients actually act on this information.

Goetz was Wired‘s executive editor, a words and ideas guy. But after his talk went live on TED.com – what Goetz calls a signal moment — the requests started pouring in. Could he make this idea a reality? As he tells the TED Blog over the phone: “There were hospitals, insurers, lab testing companies that all wanted to basically start using this. At first, I had to explain that this was a vision — this was the design of the idea, but it wasn’t a fully functioning product.”

But he realized it could be — and it should be. Other groups are working on medical data visualizations, but for Goetz, these beautiful visualizations didn’t empower people to act on the data. “Driving [people] to an action was the real thrust of what I was presenting in that talk,” he said. “I realized that it wasn’t going to be enough to observe and hope that somebody came along and did it right. That if I really wanted to do this, I would need to make a full and honest effort to try to make it happen.”

And so with former Google software developer Matt Mohebbi, Goetz launched his company, Iodine.com, in March. The goal: To bring better designed data to the people who really need it — that is, patients. Iodine taps a massive user demand for information about drug costs, effectiveness, side effects and interactions in a digestible but accurate way. Goetz calls it “data into design into decisions.”

In mid-December 2013 launched its first project: Med Labels, which are redesigned FDA drug labels. Search for any FDA-approved drug in the Med Labels database, and you’ll see all the information submitted by drug companies to the FDA in an easy-to-read format, indexed with links for jumping to relevant information. At the top of each page is a big bold button that lets you sign up for email notifications for any major changes the FDA issues to the drug label information. As a comparison, to find information on overdosing on Prozac from the FDA.org homepage, it takes seven clicks and a bit of hunting to find the page with the most recent label information, and — from there — a search on the page for the word “overdose.” (It’s not until the 6th instance that you arrive in the right place.) But in Iodine’s Med Labels database, you search “Prozac” to find the label page, then click on “Overdosage” in the left nav. And you’re there. Check out Iodine’s labels, versus the FDA originals, at the bottom of this post.

(Note: The National Library of Medicine provides a similar service, but the interface looks like it hasn’t been updated since the site was launched in 1993.)

It’s still early days for Iodine. But eventually it will help users make decisions like: Am I having a normal reaction to this drug, or should I go see my doctor? The goal is to allow users to input their age and gender and, based on similar people in clinical trials, determine whether their experience with a drug is typical. Medical data thus far, says Goetz, has been “designed for the doctor or the insurance company or whoever is footing the bill. Our health care system is structured [so] that consumers do not usually bear the brunt of the cost — so they are not seen as the customer.” It’s time for that to change, he says.

Iodine will put medical data in its users hands – which some critics call dangerous. Consider the discussion around 23andme, which until early last month allowed people to send in their saliva for a genome sequencing and health-related feedback. Since late November, when the FDA delivered a public flogging over the accuracy of the service and ordered the company to stop marketing it, 23andme has become emblematic of the fight over patients’ rights. Still, Goetz only has admiration for 23andme as a way for people to actively engage with their health. “There are arguments that ordinary people can’t handle medical information … that the doctor should be the only vehicle for presenting medical information to an individual,” he says. “That is a classic paternalistic argument that has served medicine well for decades, but it is rapidly eroding as a plausible principle, in part because we’re putting much more onus on individuals. We’re expecting much more of individuals in terms of their responsibility for their health. But if we’re going to give them the responsibility, we need to give them the tools to manage it.”

According to Goetz, Iodine is meant not to supplant doctors but to supplement them. All of the information provided by Iodine is from clinical trials, and the company has a doctor and pharmacist on staff.

The important thing, says Goetz, is to realize that the end user in healthcare is really the patient.

Iodine’s easy-to-understand Med Label for Prozac. Click on the image to see it a little bigger.

A look at the FDA’s label for Prozac. Click on the image to read its sprawling complexity in detail.

A look at the crystallites of AZT, the first antiviral approved for the treatment of HIV/AIDS. Originally, AZT was created to treat cancer — but it failed in tests.

When you pop a pill, do you know how it works? Most modern drugs target specific molecules, interacting with disease at the molecular level. But while we know the molecular causes of roughly 4,000 diseases, a very slim 6 percent of those diseases have a safe and effective drug to treat them. Why? Because of the incredible difficulty and cost of finding a compound that is perfectly shaped to interact with a molecular cause, and that also happens to be safe.

Francis Collins, the Director of the National Institutes of Health, wants to help this process along. Francis Collins: We need better drugs -- now In yesterday’s talk, given at TEDMED 2012, Collins makes a bold case for translational research to produce better drugs, faster. What does “translational” mean? It means research that takes a particular look at basic scientific discoveries and asks: how can we make an actual medicine from this? To that end he helped launch the NIH’s National Center for Advancing Translational Sciences in 2011. NCATS aims to do away with the costly and time-consuming bottlenecks that prevent new drugs from coming to market.

Collins hopes to encourage pharmaceutical companies to open up their stashes of drugs that have already passed safety tests, but that failed to successfully treat their targeted disease. He also wants to look at how drugs approved for one disease could successfully treat another. We can teach “old drugs new tricks,” Collins says in his talk, by matching them to the molecular pathways of other diseases.

Doing so will require academia, the pharmaceutical industry, government agencies and patient advocacy groups to work together, in conjunction with talented researchers and ample funding. After all, a single drug can cost billions to develop. Still, it’s possible.

In his talk, Dr. Collins mentions two failed cancer drugs that were successfully repurposed: zidovudine (AZT), the first antiviral approved for HIV/AIDS in 1987 and, more recently, farnesyltransferase inhibitor (FTI), which was used to successfully treat children with the rapid-aging disease Progeria in a 2012 clinical trial.

Fascinated, we asked Collins to share more. Below, read his list of seven drugs that have been repurposed. Of them he writes via email, “None of these drugs could have been developed without collaborations between drug developers and researchers with new ideas about applications, based on molecular insights about disease.”

1. Raloxifene: The FDA approved Raloxifene to reduce the risk of invasive breast cancer in postmenopausal women in 2007. It was initially developed to treat osteoporosis.
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2. Thalidomide: This drug started out as a sedative in the late fifties, and soon doctors were infamously prescribing it to prevent nausea in pregnant women. It later caused thousands of severe birth defects, most notably phocomelia, which results in malformed arms and legs. In 1998, thalidomide found a new use as a treatment for leprosy and in 2006 it was approved for multiple myeloma, a bone marrow cancer.
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3. Tamoxifen: This hormone therapy treats metastatic breast cancers, or those that have spread to other parts of the body, in both women and men, and it was originally approved in 1977. Thirty years later, researchers discovered that it also helps people with bipolar disorder by blocking the enzyme PKC, which goes into overdrive during the manic phase of the disorder.
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4. Rapamycin: This antibiotic, also called sirolimus, was first discovered in bacteria-laced soil from Easter Island in the seventies, and the FDA approved it in 1999 to prevent organ transplant rejection. Since then, researchers have found it effective in treating not one but two diseases: Autoimmune Lymphoproliferative Syndrome (ALPS), in which the body produces too many immune cells called lymphocytes, and lymphangioleiomyomatosis, a rare lung disease.
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5. Lomitapide: Intended to lower cholesterol and triglycerides, the FDA approved this drug to treat a rare genetic disorder that causes severe cholesterol problems called homozygous familial hypercholesterolemia last December.
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6. Pentostatin: This drug was created as a chemotherapy for specific types of leukemia. It was tested first in T-cell-related leukemias, which didn’t respond to the drug. But later NIH’s National Cancer Institute discovered that the drug was successful in treating a rare leukemia that is B-cell related, called Hairy Cell Leukemia.
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7. Sodium nitrite: This salt was first developed as an antidote to cyanide poisoning and, unrelated to medicine, it’s also used to cure meat. The National Heart, Lung, and Blood Institute is currently recruiting participants for a sodium nitrite clinical trial, in which the drug will be tested as a treatment for the chronic leg ulcers associated with sickle cell and other blood disorders.

Interested in more thoughts on how we can change the long, clunky process of testing pharmaceuticals? Watch these 5 TED Talks with fascinating ideas for medical research »

The way we test new drugs is broken, says Susan Solomon at TEDGlobal 2012. Below, several more speakers with ideas for fixing this system. Photo: James Duncan Davidson

The process for testing new drugs is clunky at best. As Susan Solomon reveals in her TED Talk, drug discovery on average takes 13 years, costs $4 billion, and has a 99% failure rate. Drugs are tested in the lab, then in animals, then in human trials that often aren’t big enough to be conclusive. (Human beings have a near infinite number of differences — a truly amazing thing, until different bodies start reacting in unpredictable ways to the same treatment.) As Roger Stein shares in his TED Talk, because of the incredible challenges inherent in this system, about 20 years of life-saving drugs sit in labs, untested.

Many TED speakers have shared intriguing ideas for streamlining, improving and rethinking the way we test pharmaceuticals. Below, watch seven talks with bold ideas that could potentially get medicines to people faster, and in forms that work better for their unique body composition.

Susan Solomon: The promise of research with stem cells Susan Solomon: The promise of research with stem cells Susan Solomon founded the New York Stem Cell Foundation (NYSCF) to give researchers a safe-haven to study stem cells, which she calls “our bodies’ own repair kits.” In this talk from TED Global 2012, Solomon shares how they are using a machine that creates stem cell lines — 2,500 of them by the end of the year. The idea is to eventually produce a comprehensive array of 25,000 stem cell lines — which act like avatars for a wide sample of people — that researchers would have access to as they develop new drugs.

Roger Stein: A bold new way to fund drug research Roger Stein: A bold new way to fund drug research Investing in a drug — say, a potential treatment for cancer — is a financially risky thing. Which means that far too many drugs simply can’t get the funding to go to trials. At TED@StateStreet, financial engineer Roger Stein shares an ingenious idea: pool hundreds of drugs into a fund, the same way you would with mortgages, and thus decrease the risk. In this personal talk (Stein’s father has cancer, but is doing much better thanks to an experimental drug trial), Stein shows how this could bring investors and venture capitalists running, and could create a new revenue stream for medical research.

Nina Tandon: Could tissue engineering mean personalized medicine? Nina Tandon: Could tissue engineering mean personalized medicine? TED Fellow Nina Tandon has engineered human heart tissue in the lab that actually beats. Though it may sound like a plot from a sci-fi film, someday, surgeons could use this tissue like mechanics use spare parts in cars. But there is another potential use — lab-created tissue could be used to test pharmaceuticals. In this talk from TEDGlobal 2012, Tandon explains that induced pluripotent stem cells — cells that have been tricked into acting like embryonic stem cells — can be grown in skin tissue, brain tissue, heart tissue, you name it. This means that a model of a person’s body could be stored on a chip and, from there, clinical trials could be conducted on these chips. Once a drug is approved, engineered tissue could allow doctors to test exactly how different drugs would work for a specific patient. Tandon envisions a future of personalized medicine, where patients try on treatments the way they do a pair of jeans.

Ben Goldacre: What doctors don't know about the drugs they prescribe Ben Goldacre: What doctors don’t know about the drugs they prescribe In this talk from TEDMed 2012, Ben Goldacre shares a scary fact of our medical testing apparatus — that a large number of the trials conducted on any given drug never get published, meaning that doctors do not have all the information necessary when they write prescriptions. Goldacre sounds a warning bell that medical research shouldn’t be conducted by companies hoping to turn profit from drugs, and that there should be no option not to publish the results of any medical trial.

John Wilbanks: Let's pool our medical data John Wilbanks: Let’s pool our medical data When signing on for a medical trial, participants are given “informed consent,” a document that carefully lays out the scope and risks of the research. It’s a great thing, intended to shield participants from abuse and trickery, but has one unfortunate consequence. Because of informed consent, medical data has become siloed. In this talk from TED Global 2012, John Wilbanks shares an idea for pooling medical data and making it available to anyone wishing to test a hypothesis.

Geraldine Hamilton: Body parts on a chip Geraldine Hamilton: Body parts on a chip Over the past 60 years, a startling trend has emerged — for every billion dollars spent on the research and development of new pharmaceuticals, fewer drugs are making it to the market. In this talk from TEDxBoston, Geraldine Hamilton shares how her lab is creating organs on a chip. These chips recreate the biochemistry of the body, meaning that cells are in the environment they thrive in, rather than placed in a petri dish or injected into an animal, and these chips could be linked together to form a “human on a chip.” These incredible chips could allow scientists to model diseases we don’t understand. They could help us get rid of animal testing, test the chemicals we use everyday to see how they actually affect the body, see how medications work in children and so much more. It’s an inspirational look at a new approach to medicine.

Jay Bradner: Open-source cancer research Jay Bradner: Open-source cancer research Jay Bradner’s lab made an exciting medical discovery — a molecule that might inform cancer cells. But instead of patenting it, they published the finding and even mailed samples out to other labs. At TEDxBoston 2011, Bradner shares what he sees as a flaw in our current medical research system — that information that could benefit us all can be claimed and owned.