patient-centered care

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Can We Use The Crowd To Beat Cancer? Seeking Patient Data To Save Lives

You’re diagnosed with cancer. Your life changes in an instant and you’re faced with big choices and no road map. Consider this scary statistic: Five-year survival rates for common cancers can vary by 50 percent depending on where a patient is treated. And this: You often can’t get precise answers on which type of cancer responds to which type of treatment.

The uncertainties could drive anyone mad; and if you’re like Marty Tenenbaum, a cancer survivor, computer scientist and Internet entrepreneur who thrives on data, it can make you truly crazy. “Patients are dying because information is not evenly distributed – which is outrageous in the Internet age,” Tenenbaum says. “Your treatment is based on your mail ZIP code, not the molecular ZIP code of your tumor.”

He cites the 50 percent variation number often as evidence that better information can save many lives. He recalls when he first learned of his cancer, “I went running around to six different doctors, each had a different treatment recommendation, but there was no data with which to make a rational decision on what would work best for me.”

Tenenbaum was diagnosed with metastatic melanoma in 1998 at the age of 55. “The wicked thing about melanoma is that it can metastasize anywhere — and it does,” he said. A cure, in his case “was almost out of the question…treatment options were minimal.” Tenenbaum’s cancer had spread such that surgery wasn’t considered viable. Still, Tenenbaum, a tenacious guy who got rich in the dot.com boom, set out to find a surgeon, which he did — Donald Morton, the renowned cancer surgeon and researcher.

Sixteen years later, Tenenbaum is now an advocate for what he calls “precision oncology 3.0” – using molecular profiling and sophisticated computational methods to reverse-engineer the putative networks that drive a given patient’s tumor, and attack these drivers with combinations of targeted therapies. He founded the nonprofit Cancer Commons to level the cancer playing field so that all patients get access to the same, top-rate data. “Awareness is not the problem today,” he says. “We need science, data, so patients can approach their cancer in a systematic way.”

Every patient experiences this: you face a life or death decision, which often must be made in days. You go out for second opinions and get conflicting recommendations. You’re thrust into this strange world with no maps, no Zagat’s, no nothing.

Cancer Commons, which exploits the “convergence of recent developments in genomics, big data informatics, social networks, and personalized medicine,” aims to radically transform cancer research and treatment. Here’s how it works. If you’re a cancer patient, you share your data (anonymously) — what type of cancer you have, its molecular signature (if you’ve got that), what types of therapies and treatments you’ve tried and whether they worked or didn’t.

What you get in return is highly targeted news and updates on developments that may be clinically relevant to you — including results from the latest medical conferences and researchers, tweets on the top takeaways from the annual personalized medicine meetings, and relevant patient blog postings. You also get access to a curated data base linking molecular subtypes of cancer, with recommended treatments and trials. That knowledge is continually updated based on scientific developments and actual patient outcomes.

When the Commons grows big enough, the thinking goes, there will be a large pool of useable data available for all. (Currently there are only a couple of thousand patients involved, with the focus on melanoma, lung and prostate cancer, but Tenenbaum says a big expansion is in the works.) “Once we get enough data, patients will be able to know, for the first time, what their peers are actually doing and how it’s working. If they then report back what they did, a virtuous learning cycle ensures, resulting in better and better data.”

Put another way, he says Cancer Commons hopes to build “a consensus model of the various subtypes of cancer and how best to treat them with the latest targeted- and immuno-therapies, to learn from each patients’ outcomes whether the experts got it right or not, and then to rapidly disseminate the results in time to help the next patient.”

I caught up with Tenenbaum recently at MIT in Cambridge where he was giving a talk — provocatively titled, “How To Beat Cancer.” In it, he argued that often, what are considered to be “incurable” cancer cases may, actually, “be beatable by exploiting biological features unique to each individual’s cancer.” Like others, he suggests, “we’re on the cusp of managing cancer as a chronic disease using new cocktails of targeted therapies much like treatment for HIV.”

He agreed to answer a few more questions.  Here, edited and condensed is some of our conversation:

RZ: You talk about a basic problem in cancer care that hinges on patient data. What is the problem?

MT: Every patient experiences this: you face a life or death decision, which often must be made in days. You go out for second opinions and get conflicting recommendations — each doctor knows what they know and they each know different things. You’re thrust into this strange world with no maps, no Zagat’s, no nothing. So no one could tell me: ‘Which treatment is best for me?’ [Part of the problem is that] no one shares data — neither the de-identified data from personal health records, nor the data that drug companies collect during clinical trials – not even the data from the control arms of trials, or from failed trials. The only ones with the incentive and urgency to share the data are cancer patients.

After your cancer recurred and you were enrolled in a clinical trial, you describe a kind of “aha” moment. Can you explain?

In 2003, I entered a cancer vaccine trial. Shortly after I went off the vaccine I had a recurrence. I opted for more surgery and went back on the vaccine, but after six months the vaccine was no longer available. The trial had been halted because, statistically, patients on the vaccine arm were not doing better than those on the control arm. However, the vaccine appeared to help some people – and I was fortunate to be among them, having experienced a particularly strong immune response. The vaccine company had no interest in trying to understand why a few patients, like me, benefitted. This is a big shortcoming with clinical trials based on population statistics…to do science, you really need to figure out why it worked in one person and why it didn’t in another person. Many good drugs have been rejected by failing to do this level of analysis.

How is Cancer Commons unique? There are other certainly other data-sharing, disease specific, patient-driven advocacy groups out there, Patients Like Me, for instance.

We’re patient focused and science based; Our mission is to aggregate and analyze data, to provide patients with the best information — up-to-the-moment, personalized, and actionable to help them make informed decisions…like a Lonely Planet guide to cancer.

Patients have the legal right to their data — the HIPAA law just changed this year and it makes it much easier for patients to get their data in digital form. But beyond that we want to build this consensus knowledge base — what are the molecular subtypes of this cancer and how should each subtype be treated.

Typically, tumors are analyzed with a genomic or panomic panel — you have data, then you have treatments recommended by experts based on trials. You want patients and their doctors to be able to consult this knowledge base, determine their subtype, determine their options or have a different option. The point is, do whatever it is you want, but tell us what you did and how it worked so this becomes a virtuous learning cycle. This way we can continually test the hypotheses of experts and continually refine them. Cancer is not generic. Patients in the same group who were thought to have the same disease respond differently. For instance, the current melanoma model has about 30 actionable subtypes [a few years ago we knew about 3] and this comes from widespread availability of molecular testing.

[An aside: Exhibit A when it comes to the potential of this molecularly personalized diagnostic testing and treatment is the high-profile case of Lukas Wartman, a young doctor diagnosed with Acute Lymphoblastic Leukemia, a cancer of the blood that is highly treatable in children, but often fatal in adults. Doctors discovered that in Wartman’s case, a gene called FLT3 was being expressed at a much higher level than normal. So, using a drug-gene interaction database, doctors at the Genome Institute at Washington University “found a drug, Sutent, normally used in kidney cancer that targets a “hyperactive” FLT3 gene.” Wartman’s cancer went into remission.]

Why do you compare the current state of cancer care to the early days of AIDS?

Genetically, every cancer appears to be unique, and like AIDS, requires a custom cocktail of three or more drugs to treat it, and prevent it from evolving into a resistant form. With thousands of subtypes and tens of thousands of therapy combinations , the current clinical trials system, which was designed to test drugs as monotherapies on homogeneous populations, is unsustainable. There simply aren’t enough patients to populate a randomized trial for each rational drug combination.

For this reason, we’re designing Cancer Commons to support rapid proof of concept studies in small numbers of patients — or even individuals – by connecting them directly with researchers interested in their subtype of cancer. Continue reading

Study: Patients Feel More In Control When They Can See Docs’ Notes

(Beth Israel Deaconess Medical Center)

Here’s more evidence that patients feel better — and are better patients — when they take a more active role in their own medical care.

A study led by doctors at Beth Israel Deaconess Medical Center found that patients who had access to their doctors’ written notes “felt more in control of their care” and better understood their medical issues. In addition, these patients demonstrated better recall of their care plans and were more likely to take their medications as prescribed, the study, published in the journal, Annals of Internal Medicine, found.

(Watch the video here.)

From the BI news release:

Doctors participating in the OpenNotes trial at BIDMC, Geisinger Health System in Danville, PA and Harborview Medical Center in Seattle reported that most of their fears about an additional time burden and offending or worrying patients did not materialize, and many reported enhanced trust, transparency, and communication with their patients.

“Patients are enthusiastic about open access to their primary care doctors’ notes. More than 85 percent read them, and 99 percent of those completing surveys recommended that this transparency continue,” says Tom Delbanco, MD, co-first author, a primary care doctor at BIDMC and the Koplow-Tullis Professor of General Medicine and Primary Care at Harvard Medical School. “Open notes may both engage patients far more actively in their care and enhance safety when the patient reviews their records with a second set of eyes.” Continue reading

Doctors Not Always Open, Honest With Patients, Survey Finds

You trust your doctor to deliver all the facts, right?

Well, perhaps you should think again.

According to a just-published survey of more than 1,800 practicing physicians, a good chunk of doctors aren’t telling the full truth about various aspects of your medical care.

Specifically, about one-third of the survey respondents didn’t completely agree with disclosing serious medical errors to patients because they feared a malpractice case; two-fifths did not completely agree that they should disclose their financial relationships with drug companies to patients; and over one-tenth said in the past year, they’d actually told patients something that wasn’t true.

And this is happening despite doctors’ widespread endorsement of a set of guidelines called the Charter on Medical Professionalism, which requires “openness and honesty in physicians’ communication”.

“Our findings raise concerns,” write the study authors, led by Lisa Iezzoni, a physician and professor of medicine at Harvard Medical School, “that some patients might not receive complete and accurate information from their physicians, Continue reading

Why Shared Hospital Rooms Are Becoming Obsolete

A cushy, new private room at Massachusetts General Hospital

Lower infection rates. More Privacy. Better Sleep.

All in all, happier, healthier patients. That’s why the private, single-occupancy hospital room has become the gold standard in new hospital construction — from Boston to Bolivia — and why having a roommate in the hospital is going the way of the house call.

Health care has changed a lot since the late 1850s, when Florence Nightingale advocated for large, 30-plus patient wards over private rooms. The world’s best-known nurse argued that the spacious, multi-occupancy wards improved the work environment for nurses by making patient supervision easier and therefore, care better.

‘When was the last time you spent the night in a hotel with someone you don’t know?’

In the U.S. these days, with patients rebranded as consumers, expectations have changed. “When was the last time you spent the night in a hotel with someone you don’t know?” is how Jeanette Clough, the CEO of Mt. Auburn Hospital in Cambridge, which is in the midst of converting to an all-private 220-room facility, framed the issue.

The trend toward all-private rooms has been building for some time, says Karen Reno, RN, Ph.D, a managing consultant for Joint Commission Resources, the consulting arm of the Joint Commission, the panel that accredits hospitals. But recently, she’s seen the phenomenon take hold in places as diverse as Vietnam and Bolivia, and across the U.S. in hospitals with money to spend. Though some patients still prefer a roommate — to alleviate loneliness, or for backup help — “the majority of hospitals being built are trying to make private spaces,” Reno says. “There are so just so many compelling reasons to do it.”

1. Contagion

The number one argument for private rooms is infection control.  Continue reading