Larry Smarr, perhaps the world’s most-quantified man, chronicled his bodily input and output in minute detail for months. He used the resulting mountains of microbiotic data — and a supercomputer — to self-diagnose a gastrointestinal illness, much to the discomfort of his doctor, who told him, “that’s science, not medicine.”  Still, Smarr may well be the patient of the future. Watch him tell his tale at TEDMED 2013.

Yet, after 50 years of studying the problem and about a decade trying hard to fix it — mainly via health messaging — we continue to gain weight exponentially. Obesity has increased 250% since the 1960s, and diabetes more than five-fold. Why can’t we solve this?

Peter Attia at TEDMED 2013. Photo: Jerod Harris

For starters, what if all of our efforts to fight weight gain have been based on inconclusive science? What if our “treatment” is then incorrect, rather than conventional wisdom that says people just can’t follow it?

TEDMED 2013 speaker Peter Attia and his non-profit organization,Nutrition Science Initiative (NuSI) hope to help science, and eventually public policy, reach the truth. Attia and co-founder Gary Taubes, a science and health journalist and author of “Why We Get Fat,” founded NuSI a year ago. They hold that research on nutrition has not been nearly rigorous enough to date to make existing claims about the relationship between nutrition and health due a host of factors, including a lack of proper controls, difficulties in meticulously monitoring subjects, and insufficient resources to conduct the necessary experiments to show cause and effect.

Supporting their claim, a meta-search published in the New England Journal of Medicine last January concurs, saying that most popular dietary recommendations concerning obesity, from the value of eating breakfast and more fruits and vegetables, to the evils of snacking, are unproven.

Peter Attia works out in a metabolic chamber, an instrument that will be used in at least one of the upcoming NuSI studies about nutrition and obesity. Photo: Terry Manier

To begin its quest, NuSI is funding and facilitating what it hopes will be the most rigorous research to date on the relationship between nutrition, obesity and metabolic disease to date, starting with three large experimental collaborations at six leading academic institutions over the next three years.

NuSI will release details on the projects in the next few months. We do know that, as the Wall Street Journal reports, the Laura and John Arnold Foundation (LJAF) of Houston, Texas has recently agreed to fund approximately $40 million of research over the next three years. We’ll give updates here.

For more info: www.nusi.org; @NuSIorg

Jay Walker, left, with David Agus at TEDMED 2013. Photo: Jerod Harris/TEDMED

Cancer took center stage at TEDMED 2013, too, as physician and author David Agus joined TEDMED curator Jay Walker to explain, as Agus told us today, why “cancer is not something the body gets, it’s something the body does.”  In other words, most of us are living with cancerous cells at any given time; it’s our body’s environment that decides whether they will multiply and flourish into disease.

“Anglelina Jolie doesn’t have cancer, and the BRCA1 mutation doesn’t cause cancer. It makes your cells more susceptible to getting these mutations that cause cancer,” he said. “What this is telling us is that her body has a systems issue.”

Agus is in favor of widespread genetic testing, particularly in cases of a family history, but in context.

“We’re in favor of getting all the information we can to help make decisions. Not that everyone should go out and have preventive mastectomies; BRCA1 mutations only cause 5 to 10 percent of all breast cancers. This is a small piece of the puzzle of information, but it’s an important piece,” he says.

What testing can do for us, he says, is help influence daily behavior.

“We’re not good at thinking about tomorrow, we’re only good about thinking about today. So if knowing your information changes how you live your life — whether you’re sedentary, whether you smoke or not, what you eat, how much you sleep – it’s still a major win.”

Agus talked more about the issue on CBS Today and yesterday published an op-ed in the New York Times about the cost of a gene test. He spoke at TEDMED 2011 about redefining cancer.

At TEDMED 2013, Yuste discussed why the initiative is critical to advancing neural knowledge.

That’s the drive behind a new website, MeForYou.org, part of a University of California at San Francisco (UCSF) awareness campaign around precision medicine, the topic of the OME Summit last week.

UCSF Chancellor and TEDMED 2013 speaker Susan Desmond-Hellmann is a leader in advancing precision medicine, which calls for disease treatment that integrates genomic knowledge and other molecular research with input from patients’ health records, along with social and environmental data.

Ideally, precision medicine will lead to improved diagnosing and customized treatment based on personal genetics, and include a feedback loop to monitor effectiveness. UCSF already has a number of related initiatives on board, including:

• A study on fronto-temporal dementia – more common in people under age 60 than Alzheimer’s disease – that is integrating all known data on the disease, with the goal of homing in on the genetic and molecular causes;
• A large-scale breast cancer project that tracks patients’ progress during a clinical trial, charts it against population-based data and adapts therapy accordingly;
• A collaboration with Kaiser Permanente that has resulted in the world’s largest and most diverse genetic database, tied to environmental exposures, telomere lengths and in some cases decades of electronic health records.

David Arrington, UCSF spokesperson, says MeForYou aims to drive conversation about something we all own — individual genetic and health data — and someone we know whom might benefit from it. Now in its initial phase, the campaign simply asks users, “What can you do?” prompting them to share their photo and dedicate their efforts to the health of one or more people.

“Never before in history have we had the right convergence of infrastructure, computer power and understanding of biology,” Arrington says, “and now we need to change the social contract. We’re trying to put a new thought into the public consciousness of, medically speaking, what can they do for someone else? What can I do to take a meaningful step?  And then, If I can pledge to help this person, why not the general population?”

UCSF is still working to gather partners in the effort, which could include advocacy groups, non-profits, biomed and health tech companies and insurers, and to work out logistics on how to scale it up, ideally to a global level. Still, most integral to its success are contributors, who will receive email updates about the initiative as it progresses about how to go about contributing data.

“This is a grassroots effort. Our hope is that people will start showing up to their checkups being well-informed, and say, “I see you’re entering something in my medical records.  Where’s that going?  How is it helping my family and my kids?” Arrington says.

Visit MeForYou.org for more information and to make a dedication.

Related: TEDMED speakers Peggy Hamburg and Francis Collins discuss precision medicine with Desmond-Hellmann.

This February 20^th was my third-year anniversary of being diagnosed with lupus.

I have had joint problems since I was little. But in January of 2010 I lost my grandmother to throat cancer and shortly afterwards my symptoms because so severe I couldn’t move out of the bed. It took me about a month to be properly diagnosed. I was first diagnosed with rheumatic arthritis, but my general practitioner (GP) is so hands-on; he referred me to a rheumatologist right away so I wasn’t misdiagnosed for long.

Lupus is such a mysterious disease. One moment its not active at all, and the next moment completely active. I could be having symptoms like swollen achy joints or chronic fatigue without any warning. There are so many “ifs.” You never know how your day is going to go until it ends and you never know what what’s coming down the pike.

Putting a Team Together

When you have lupus, you have to manage multiple care providers, including nephrologists, GPS, and a rheumatologist.  I’m on my third rheumatologist now, because the first two wouldn’t let me an empowered patient. That means that you’re enabled and educated, and you know how to take part in your own care. I just started seeing my new rheumatologist that I have only seen a couple of times. I finally found a rheumatologist who was willing to sit down and work with me and not at me. It took me about two years to get this team together.

I’m on a drug that may cause eyesight issues, so I also have an opthamologist. I have to see a psychotherapist and a psychiatrist – lupus itself causes depression – so each month I have about six doctors’ appointments minimum.

Technology Helps Communications

I first go diagnosed my rheumatologist wasn’t open to sharing my medical files, so when it came to making decisions she didn’t care about what I had to say. Now, I have a patient portal that allows me to send my GP e-mail, so I can email him whenever something’s up, and he can get in contact with the other doctors.

I don’t know if many patients have patient portals, but it helps me a lot.  The fact that I can just email my doctor is wonderful, because when you call the office you almost never get the doctor.  But when I email my GP, he responds within a day or two.

Of course, you also have to have a copy of your own health records to share when necessary. It’s so important. I tell my lupus brothers and sisters, make sure you always have your own health records with you.

Still, it’s not like I can look at my charts online.  All of my records are paper records.  I have no idea why I can’t get them electronically. Or diagnosing or medications. Even my GP will still use a book to find out whether or not medicines will clash, and I’m like, ‘Can’t you go online and find out whether that’s happening?’

I usually use a health app, CareCoach. It helps me prepare for my visits so I can write down all the questions I have to my doctors. It also helps me record all my doctors’ visits, so I can just play back my experience and get the information I need.

It does make me feel more in control, and definitely more hopeful. It’s a good feeling when everyone is on the same page and all of your doctors are working towards the same goal.  It definitely feels more empowering, and it gives me hope that I’ll have a better outcome.

On Insurance Hassles

There was a huge hurdle in getting health insurance. I couldn’t afford it.  I’m listed as permanently disabled, so managing my healthcare is a lot more straightforward, but there are still some hurdles. I have so many doctors appointments and it all adds up, especially when it comes to medical billing. Every single time the mail comes I get a new bill, so I’m always busy getting through all that.

In the Hospital

There is so much that happened to me in the past six months. I had a hospital stay recently. I had a urinary tract infection that went straight to my bloodstream and caused all of my organs to shut down, so because of that I had to have a blood transfusion.

I went to many different hospitals during my recent visit.  I have a family hospital, which is in the Bronx, but prior to that I was in two other different facilities that did not work with me. They weren’t practicing participatory medicine, where the patient is at the head of the table in their own care. They worked hard at my family hospital to follow my wishes and to work closely with my care team.

Finding a Patient Network

One thing I would tell other Lupus patients: Don’t be shy to ask your doctor questions.  A lot of us can get intimidated when we go into the doctor’s office, because maybe the doctor’s bedside manner is not that great.

Maybe the single biggest step a patient with chronic illness can take is talking to other patients. Lupus patients are always talking to each other online to help us manage our care teams. It’s like, ‘We’ve discussed the issues with each other, now let’s go talk to the doctor.’

I feel like social media in itself has been really helpful in managing my own care, because there are so many patients out here who are veterans and have been managing this disease for 20 years and more. That’s how I found my first mentor, my first year with lupus, and now she’s one of my great friends. She’s been one of my close mentors ever since.

Tiffany Peterson

Tiffany Marie Peterson blogs at www.tiffanyandlupus.com. Follow her on Twitter @tiffanyandlupus.