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.

This is the story of a Cancer Connection I never hoped to make and also the one that has brought me the most joy.

About a month before my family and I left for the University of Oxford, my dear friend and neighbor Ray came over and asked if I’d look at this side, where an orange-sized mass was growing.

So, you know I’m a cancer doctor, so you can probably guess how this story plays out.  But before I tell you (or let Ray tell you), I want to share a bit about Ray. He’s an artist whose paintings have always struck me, and my scientist and physician friends, in similar ways.  There is just something alive about them.  Something cellular.  Something moving.

This makes sense as Ray studied biology as an undergrad, but it is also says something about the artist: that there is always something moving in his mind. At the heart of this artist is a scientist.

I’ll let him share his manifesto about his treatment, and the subsequent healing that he has found through this new project, “My Sarcoma.”

My name is Ray Paul. I am a 50-year-old artist, musician, frustrated biologist and myxofibrosarcoma patient. As of my latest scans in February 2013, I am free of detectable cancer. My next round of scans are scheduled for June 2013.

My journey begins in the spring of 2011, when I noticed a rapidly enlarging lump protruding from my left flank. Unfortunately, I fell into the category of the uninsured who wait and hope for their medical issues to resolve magically. Finally, as the mass grew to the size of an Idaho baking potato, I felt compelled to go into the local Emergency Walk-In Clinic. I was told it was likely a lipoma and I needed to find someone to remove it. After weeks of worry and several inquiries, I approached a surgeon friend who agreed, with some trepidation, to perform a tabletop resection, using local anesthesia. It soon became clear that the mass was more than a lipoma.

I was sewn up and a sample was sent to his pathologist who forwarded it to the pathology team at Moffitt Cancer Center. Soon thereafter, I received “The Call.” Shock and confusion rushed in, but curiously, were followed by a sense of calm resolve and numb determination.

I was admitted as a patient to Moffitt Cancer Center in August of 2011. I began neoadjuvant radiation therapy in September 2011, followed by a radical resection in 2012 of the 12 x 12 cm myxofibrosarcoma. In July 2012 I was diagnosed with a lung mass, and underwent a lung subsegmentectomy to remove a metastatic myxofibrosarcoma.  In November 2012 I began adjuvant radiation therapy.

During this life-consuming ordeal I have placed my complete faith and trust in my team at Moffitt, and in my physical and spiritual ability to heal. Never have I dreaded going into Moffitt. The strength and determination of my fellow patients has been humbling and has greatly increased my sense of compassion. I have been inspired to create a painting for the Radiation Department, which hangs in the waiting room.

Porpoise Song

and have donated a piece to the Integrated Mathematical Oncology Department.

Sweet Jane

I am currently embarking on a collaborative endeavor entitled “My Sarcoma” project.  I plan on combining painting, photographic images of my tumor cells, printmaking, video and music to create an exhibit that illuminates my experiences as an artist and cancer patient. I envision my art to be a prescient, visual manifestation of the battle raging within, and a powerful testament to the beauty of Hope.

As a teaser, here is a prototypical Sarcoma piece from Ray.  You can see his signature style of abstract forms detailed into cellular figures, and beneath, an H&E pathology image of his own tumor.

Ray’s Sarcoma

Jacob Scott is a TEDMED 2012 speaker who blogs at cancerconnector.blogspot.com.  You can follow him @CancerConnector. You can follow Ray on Twitter at @raypaul4.