Endless Knots

Waiting, digital style

I've spent a fair amount of time in hospitals over the past four years as various family members have had to endure lengthy stays and difficult treatment. Today, I'm with a dear friend who's having relatively routine surgery in this age of replacement parts (total hip in this case) and I'm having the chance to see how another hospital, not in New York or Boston, handles things.

At Dartmouth-Hitchcock, the sole academic medical center in New Hampshire, it was evident from the first appointments that the hospital had gone digital, i.e. most of the traditional paper was notably absent. You know those clipboards where you fill out the same sheets over and over? Here, patients receive tablets (OK, not iPads, but still) where they enter info that goes into a permanent record, thus saving a few branches, at least, not to mention accurate info being available henceforth.

Here are two artifacts from today that are different from what I've seen elsewhere. The first is a sheet of info (yes, it is paper, but in this case it seems to make sense), letting me know the patient's identifying number, which links to a pager such that I can wander around the campus, and to, second artifact, info that's displayed on screens inside and outside the waiting room, letting me know exactly what the patient's status is ("Intra-op" for the past 37 minutes as of this writing). Very cool. Take a look.

 

Possible advance for treating pancreatic cancer

Re: an issue close to the heart of our family, it's always too early to tell with new drugs that attempt to stem the vile disease of pancreatic cancer (or any other intractable cancer) but today's Boston Globe leads with a new approach - going after the "microenvironment," where the cells live rather than going after the cells directly. In the case of pancreatic cancer, the cancer cells themselves are nearly impenetrable (they're encased in fibrous tissue) so researchers have been trying to find various tunneling mechanisms to get to the source of cell proliferation. I'm no doctor and no scientist so please go back to the original - but here are the key grafs:

At Infinity Pharmaceuticals, researchers have developed a pancreatic cancer drug that inhibits signaling between the cancer cell and its microenvironment, thinning a fibrous network of tissue that helps shield cancer cells from drugs.

Data from a small safety trial presented at the American Society of Clinical Oncology this year showed preliminary signs that the drug, in combination with the chemotherapy currently used to treat the cancer, called gemcitabine, could shrink tumors.

 

For the "Mondays at 4" group

 

 

It's impossible to know the right thing to do after someone close dies. We try all kinds of things. Walking. Talking. Weeping. And then there's something unexpected.

Dana-Farber Cancer Institute in Boston offers grief support groups for families of patients who've died. My husband was only treated briefly at Dana-Farber. Treated is even too strong a word. Two months before he died, he entered a small clinical trial in which an old anti-malarial, hydroxycholoroquine, was being used to stem pancreatic cancer. A very long-shot. Very. And by the time he started the trial, eight weeks before he died, he was already very ill. But, being Jeff Stamps, he thought it might be helpful for someone else ...

He made it through two rounds of the drug before he was too sick to continue. So our entire tenure at Dana-Farber was only one month long (as compared with the 13 months of excellent treatment he got a the hospital across the way, Beth Israel Deaconess).

A month or so after Jeff died, I got a very nice letter, a helpful booklet, and an invitation in the mail. Dana-Farber was holding a grief support session for people who'd recently lost family members. I went and there found about a dozen others, most of whom, like me, had lost their mates. The social worker asked if any of us would be interested in joining a regular group, which I did about a month later.

That group, led by Sue Morris, Director of Bereavement Services at Dana-Farber and author of Overcoming Grief, just concluded after six sessions. There were nine of us in all, six women, three men, most long hetero marriages, one gay couple, all of us not wanting to be there at all but all of us returning week after week. I raced up from weekends in New York on at least three of the weeks, raced because I couldn't miss it.

What we knew together was what no one wants to really understand because you can't until you're in it. And there's no way to hurry out of it. We cried together, looked at the pictures of the mates who'd died, nodded until our necks hurt when someone said something that was barely a fragment of a sentence because the rest of us knew where that string of words was headed.

I was surprised that Dana-Farber, where I barely recognized a soul, offered these sessions and that Beth Israel, where I knew and had become friends with many people, did not. Daughter #1 made an interesting observation: the death rate at Dana-Farber, being a cancer hospital, was likely a helluva lot higher than at the academic medical center across the street. I recently came across a statistic that only 56% of people with cancer survive. It's a crazy stat since 100% of us will die -- and what does 56% survival mean anyway? But the point remains -- I'm pretty certain that more patients die at a cancer center than do at a regular old hospital.

A few weeks ago, one among us, Sue Robertson, above, a classical pianist and a writer, said that she hadn't been able to play since her husband had died. I understood. I haven't been able to write since mine died (I know, I know, this is writing but not the kind of writing I want to be doing - and I know I'll get there). And in that session, she decided to see if she could play at the hospital. Which she did. Three times now the custodians at Dana-Farber have rolled out their grand piano, including this past Monday, when Sue played before our last session. Most of us were there to listen. Many of us (ahem) cried.

Beautiful... and thank you, Sue, Barbara, Mary Ann, Dagmar, Doug, Margaret, Jim, James, and our counsellor, Sue. Well done, Dana-Farber. I'm really grateful to "you" for the weeks of support...

They even comped our parking tickets.

 

 

 

Dr. Walsh: Get your PSA test, fellows

If you're a man - or if you care about men, then you must be following the current controversy over whether men should be regularly screened for rising PSA levels. The US Preventive Services Task Force, whose membership can be found here and which notably has no urologists on it, has recommended that healthy men no longer receive the blood test that measures the prostate specific antigen.

Last night, I had the chance to talk with Dr. Patrick Walsh, who is among the handful of most famous urologists in the world, and whose book, Dr. Patrick Walsh's Guide to Surviving Prostate Cancer, is the go-to resource for any man with prostate cancer. Read up here for Dr. Walsh's contributions to prostate cancer detection and the perfection of nerve-sparing surgical techniques that have vastly improved outcomes for men undergoing prostatectomies.

We first met Dr. Walsh two-and-a-half years ago when my husband was diagnosed with Stage 2A prostate cancer, found as a result of a suddenly rising PSA. Thanks to our friend, Dr. Tom Lamont, who introduced us to Dr. Walsh (they both have served on the editorial board of New England Journal of Medicine), we were able to get detailed advice from Dr. Walsh at that time. (Yes, for those of you following our family's saga, my husband had prostate cancer a year before he was diagnosed with pancreatic cancer.) Just as one tiny example of Dr. Walsh's influence: Dr. Andrew Wagner, the urologist at Beth Israel Deaconess Hospital in Boston who operated on my husband, was trained in Dr. Walsh's lab.

But I'd never met Dr. Walsh face-to-face until last night and so was very pleased to be able to talk to him at a gala this weekend honoring Dr. Lamont's 40 years of contributions to medicine. That tribute deserves a post of its own but suffice to say when 280 people show up from around the world to honor a single doctor, then you know that person has had quite an effect on medicine, in Tom Lamont's case the field of gastroenterology. I am extremely lucky to count Tom and his wife Emily Lamont as among my closest friends.

I digress. As soon as I saw Dr. Walsh last night, I asked him his opinion about the PSA controversy. He was unequivocal. Men should continue to have their PSAs monitored. Here's what he said: "29,000 American men's lives were saved this year because they had their PSAs monitored." He's a urologist. He's been treating prostate cancer for decades. He's now retired so has no vested personal interest in bringing more people into his own practice.

And so, men friends, before you cavalierly forego having your PSA checked, listen to what someone who's been working in the field for his entire career has to say. We don't have any data on how much research the panel saying to skip PSA tests actually did, how detailed the data was that they were looking at, how statistically accurate it was, how trained they were to make their evaluation, and what other factors might have been influencing their decisions.

Having just endured a family member's death from another, albeit incurable, cancer, this is not trivial stuff. As yet another doctor friend told us when my husband was considering whether to have his prostate removed, "You don't want to die from prostate cancer." It's a very difficult cancer to endure. Especially when it's preventable.

 

Dance your PhD

Enough of those dry defenses. Science, the esteemed journal of AAAS, the weekly (or is it a daily) which I, for one, don't normally associate with modern dance (or rap), sponsors an annual "Dance your PhD" contest and I'm rooting for my friend, Mount Sinai Medical School PhD-candidate Kate Collins (scroll down for her bio).

Here's how the brilliant Kate (the lead dancer/cell of the basal nucleus of the amygdala!) explains her submission to the contest (I just like the moves, never mind that my nephew, James Murrough, plays the only male role in the video): 

When first encountering a fear-eliciting stimulus, animals evince innate defensive behaviors, such as freezing. With time, most are able to overcome their automatic fear reactions and regain the capacity for organized, goal-directed action. Rodent research suggests that activity in the central nucleus of the amygdala drives stereotyped, automatic fear responses. Activity in the basal nucleus of the amygdala, conversely, appears to enable flexible and adaptive fear responses. Evidence suggests that the central and basal nuclei compete for dominance during fear, with the "winning" (more active) nucleus determining the behavior expressed.

Do similar patterns of neural activity subsume these behaviors in humans? In Kate Collins' dissertation, she is exploring the neural substrates of both automatic and goal-directed fear responses, and the transition between the two opposing states.

And now, for your enjoyment, neural substrates performing to Finger Eleven's "Paralyzer" and Young MC's "Bust A Move."

Dance Your PhD - Bust A Move: Taking Action in the Face of Fear from Alex Susse on Vimeo.

 

 

The book of life

At the very tail end of this day of atonement, a small montage of four, two in my news, two in yours, who died in the past few months of pancreatic cancer.

Clockwise from upper left, my dear friend, Donna Bannon from my hometown, who lived only 25 days post-diagnosis; my darling husband, Jeff Stamps, who lived 13 months post-diagnosis with great equanimity and dignity; Nobel laureate Ralph Steinman, who lived 4.5 years post-diagnosis and was experimenting on himself with a vaccine that held potential to ameliorate this horrid disease; and, of course, the most famous of all, Steve Jobs, who lived 7 years post-diagnosis with the most rare form of the disease, which is sometimes curable.

Donations in their memories to Pancreatic Cancer Action Network.

Yay, Harris! Fiction Book Club strikes again!

So happy to report that devoted Fiction Book Club member, former CEO of Tufts Health Plan, early innovator of HMOs, head of numerous other things, father of four highly-accomplished children, grandfather of seven, husband of dynamo-author Ruth Nemzoff, and all-around wonderfully-generous-of-spirit friend is the new Dean of Tufts Medical School! Here's the official announcement.

 

Dear Colleagues:

I am pleased to announce the appointment of Dr. Harris A. Berman as Dean of the Tufts University School of Medicine. Dr. Berman has served with distinction as Dean ad interim since December 2009, and has been an outstanding leader in the University community.

As interim Dean, Dr. Berman has done much more than oversee and guide the school’s operations. He has adroitly balanced practical problem-solving with strategic thinking, and as a result, the school is noticeably stronger than it was two years ago. Dr. Berman has led efforts to develop new programs that are academically sound, build connections to other Tufts schools, help fulfill national needs for the delivery of health care, and contribute to the school’s financial stabilization.

With the recent successful recruitment of Dr. John Leong to the department of Molecular Biology and Microbiology, Dr. Berman has filled the last of several open department chair positions. He has also helped to bring in other key clinical and basic science faculty members. He has spearheaded the expansion of the Global Health Program, increasing our international reputation through collaborations with teaching and research institutions overseas. Such partnerships offer important training opportunities for our medical students pursuing work in global health care research and delivery. These accomplishments and others have re-energized the atmosphere at the school, and helped advance important University priorities.

Prior to his appointment as interim Dean, Dr. Berman was Dean of Public Health and Professional Degree Programs and had served as Chair of the Department of Public Health and Community Medicine from 2003 to 2008. Before coming to Tufts University, he was a pioneer in the development of managed care in New England, and for 17 years, served as the chief executive officer of the Tufts Health Plan. During that tenure, Tufts Health Plan grew from 60,000 to over a million members. Before joining Tufts Health Plan, he co-founded the Matthew Thornton Health Plan in Nashua, NH, one of the first HMOs in New England. He has served as chairman of the board of the Massachusetts Association of HMOs, and of the Celebrity Series of Boston. He has also been a director of the American Association of Health Plans and of Tufts Medical Center. He is currently a Commissioner for the Group Insurance Commission and a member of the Board of Directors of Tufts Medical Center, Tufts Health Care Institute, New England Healthcare Institute, The Wolfson Foundation, and Tufts Health Plan.

Dr. Berman further embodies the University’s values of active citizenship and internationalism through his experience as a Peace Corps physician in India and a consultant to the U.S. Agency for International Development on several projects. He has effectively used that experience to promote a global health agenda for the Medical School.

A graduate of Harvard College and Columbia University College of Physicians and Surgeons, Dr. Berman served as a resident on the Harvard Medical Service of Boston City Hospital and at Tufts-New England Medical Center, and completed an infectious disease fellowship at Tufts-New England Medical Center. He is a Fellow of the American College of Physicians.

Please join President Monaco and me in congratulating Dr. Berman on his appointment.

Sincerely,

Peggy Newell
Provost and Senior Vice President ad interim

Collaborating on healthcare IT -- do it!

My friend Liz Barron, who directs custom programs at University of Maryland's Robert H. Smith School of Business, sends along the following invitation to a free one-day symposium on amping up healthcare IT by increasing research and collaboration. No need for me to ballyhoo how important this is. P.S. I like the name of the student union at UMD -- and that's seriously the university's logo honoring Kermit's friend and UMD grad Jim Henson.

University of Maryland Fall Health IT Summit

Accelerating Information Technology Enabled Healthcare Transformation in Maryland and the Nation

When: Friday, October 7, 2011, 8:30am - 5:30pm
Where: Stamp Student Union, University of Maryland, College Park

Engage with faculty from across the University of Maryland, College Park and Baltimore campuses, as they provide briefings on their latest health IT research; hear from state leaders as they provide insights on health reform in Maryland and implications for the state’s health IT strategic roadmap; join with industry, federal and university executives as they share perspectives on driving fruitful collaboration and tapping the rich resources available through the university; and much more!  Joshua Sharfstein, Maryland's secretary of health and mental hygiene, will deliver the keynote address.  The University of Maryland Fall Health IT Summit is hosted by the University of Maryland Center of Excellence in Health IT Research.

The Summit's goal is to stimulate research and collaboration between the University of Maryland and potential partners in government, industry, clinical organizations and advocacy groups.  It is a forum for stakeholders across the health ecosystem to discuss current health information technology strategy, policy and technology issues that Maryland and the nation is facing. The event also showcases the multi-disciplinary resources of the university, through its College Park and Baltimore campuses, that are being leveraged to accelerate health transformation. The event also provides a forum for engaging students and furthering intra-campus collaboration and research opportunities.

The event is free, but space is limited. Please RSVP by sending an email including your name, organization and title to Faye Baker at [email protected]




College Park, MD  20742-1815

Assistant professor appointment- our very own Dr. James Murrough

It's hard not to crow about this one. Nephew James Murrough has just been named assistant professor at the Mount Sinai School of Medicine. James's career is quite astonishing at such a young age -- and he's doing unique work in the field of psychopharmacology of mood disorders. For such a Phish fan, it's a noble pursuit. So unbelievably proud of him - and I have a hundred pictures of him from a very young age on that I'll refrain from posting in tribute to his professionalism, opting instead for this one from the Mount Sinai site. Here's an excerpt from the announcement:

We are pleased to announce that Dr. James Murrough has been appointed as Assistant Professor in the Department of Psychiatry as of July 1, 2011.  In this capacity Dr. Murrough will conduct cutting-edge clinical trials and neuroimaging research in the Mood and Anxiety Disorders Program (MAP) under the direction of Dan Iosifescu, M.D.; he will also be seeing patients in the FPA with a focus on psychopharmacology of mood disorders. In parallel, Dr. Murrough has received a secondary appointment as Assistant Professor in the Department of Neuroscience and has been named a member of the Mount Sinai Friedman Brain Institute.
 
Dr. Murrough completed his undergraduate studies at Emory University in Atlanta, GA where he earned a B.S. in neuroscience and behavioral biology. He completed a 1-year NIMH-supported research training program in cognitive neuroimaging at Weill Cornell Medical College in New York prior to obtaining his M.D. from Tufts University Medical School in Boston.
 
Dr. Murrough joined Mount Sinai School of Medicine in 2005 for residency training in psychiatry, where he subsequently excelled in both clinical care and research. Dr. Murrough became the first psychiatry resident to participate in a specialized physician-scientist research track and now serves as a mentor to current psychiatry research-track residents. Following completion of his residency in 2009, he was awarded the MSSM-AstraZeneca Research Fellowship in Experimental Therapeutics and Clinical Neuroscience of Mood Disorders. For the past two years Dr. Murrough was a research fellow in the Mood and Anxiety Disorders Program under the mentorship of Drs. Dennis Charney, Dan Iosifescu, Alex Neumeister and others.
 
Dr. Murrough’s research focuses on biomarker and novel pharmacotherapy discovery in mood disorders with an emphasis on MR imaging and PET technologies to characterize brain systems that regulate emotion and the impact of therapeutics on these systems.  Dr. Murrough has been very productive during his fellowship, publishing multiple articles in prestigious peer-reviewed scientific journals, including Nature Medicine, Archives of General Psychiatry, the American Journal of Psychiatry, and Biological Psychiatry. Dr. Murrough has received independent research funding from NARSAD, the American Foundation for Suicide Prevention and the NIH CTSA-supported KL2 Scholars Program.
 
...Dr. Murrough will continue to develop clinical and translational projects in mood disorders that cut across traditional boundaries in psychiatry and neuroscience in an effort to identify mechanisms of disease and novel therapeutic interventions that are urgently needed for...patients.

Cancer Commons - another open-science initiative

While we're on the subject of cancer, an unfortunately "popular" topic of late in my world, thanks to Patrick McGovern at Lybba (check it out, another great resource for good health and better medicine, especially for the little ones), I've learned about Cancer Commons, which is taking the next step in solving the cancer koan. This cutline carries the gist: "What if the thousands of "N of 1" experiments conducted daily by 30,000 oncologists could be coordinated into a giant adaptive search for better, individualized treatments?"

The move to aggregate data is very popular in medicine these days -- and difficult given the legacy systems of different institutions and the addiction to paper records that leaves the medical field woefully behind industry in its database interoperability.

There are many efforts to address this, e.g. I recently learned about Improve Care Now, which links pediatric GI docs and their data, thus providing them with access to greater research pools than their practices alone can provide. (If you know a child or teen with Crohn's or colitis, check it out--I'm oversimplifying their groundbreaking work here.) And there are the "translational science" awards from NIH that are attempting to accelerate the time between "bench and bedside," typically an astonishing 17 years, this according to a Principal Investigator working on one of these grants.

Comes news now of another approach being tried out in cancer that incorporates data, individualized treatment, and networking. Here's a pull from Cancer Commons' white paper. Having spent so much time online in the past nine months, reading listservs, trying to fathom what clinical trial protocols really hold promise, and whether "our" patient might be a candidate...and feeling, regardless of a very committed circle of friends, alone with the disease nonetheless, I appreciate any effort to pool information and link up researchers, clinicians, and patients. Take a look:

Modern molecular biology supports the hypothesis that cancer is actually hundreds or thousands of rare diseases, and that every patient’s tumor is, to some extent, unique. Although there is a rapidly growing arsenal of targeted cancer therapies that can be highly effective in specific subpopulations, especially when used in rational combinations to block complementary pathways, the pharmaceutical industry continues to rely on large-scale randomized clinical trials that test drugs individually in heterogeneous populations. Such trials are an extremely inefficient strategy for searching the combinational treatment space, and capture only a small portion of the data needed to predict individual treatment responses. On the other hand, an estimated 70% of all cancer drugs are used off-label in cocktails based on each individual physician’s experience, as if the nation's 30,000 oncologists are engaged in a gigantic uncontrolled and unobserved experiment, involving hundreds of thousands of patients suffering from an undetermined number of diseases. These informal experiments could provide the basis for what amounts to a giant adaptive search for better treatments, if only the genomic and outcomes data could be captured and analyzed, and the findings integrated and disseminated.

Toward this end, we are developing Cancer Commons, a family of web-based open-science communities in which physicians, patients, and scientists collaborate on models of cancer subtypes to more accurately predict individual responses to therapy. The goals are to: 1) give each patient the best possible outcome by individualizing their treatment based on their tumor’s genomic subtype; 2) learn as much as possible from each patient’s response, and 3) rapidly disseminate what is learned. The key innovation is to run this adaptive search strategy in "realtime", continuously updating disease and treatment models so that the knowledge learned from one patient is disseminated in time to help the next.

Cancer Commons is being developed one cancer at a time, beginning with melanoma.