Terry is a particularly difficult patient. She is not hard because of her cancer, which is in remission, nor is there a problem with pain, of which she has little, and Terry is not particularly demanding for the nursing staff. No the real problem, the challenge, the thing that makes her so difficult is that Terry is married. Terry is married to Dr. P and he is a particularly difficult man.
Terry’s husband loves Terry very much. He wants her to have the very best care. Dr. P makes certain that all the doctors know everything that is going on, all the time; he makes sure the nurses are on top of every detail; he demands the best from the all the hospital staff. In fact, Dr. P works so hard to control Terry’s care, to stay on top of her case, to monitor every moment, it is nearly impossible to take care of Terry.
There are many challenges for doctors taking care of other doctors or their families, or, in reverse, there are many challenges for doctors when they seek care for themselves and their families. The result of this conflict is often inferior medical care. Therefore, wanting to honor and help doctors get good quality treatment let us take a moment to review the doctor verses doctor verses medical system dilemma.
First, it is hard for doctors to decide where to go for medical care. If you stay in the same community where you practice you lose some privacy and perhaps even respect in the physician community. Who do you chose and how do you avoid offending the other physicians you do not use? If you leave your own area, you lose the convenience and familiarity of getting care close to home.
The theory of preventative care, including inoculations, is that we spend a little money now to offset big expenses later in life. But sometimes behavioral friction keeps this from happening, even when the technologies and approaches are proven. We are witnessing such a failure right now with regard to Human Papilloma Virus (HPV).
Here’s the story, from MGH’s James Michaelson, PH.D., arguably one of the most thoughtful, trustworthy, and sensible researchers in the field of analysis of cancer survival. Jim and his team develop sophisticated mathematical methods for predicting the risk of local, regional, and distant recurrence. He says:
There are a couple of good papers about Human Papilloma Virus (HPV), and the coming epidemic (yes, an overused term, but truly applicable here) of head and neck cancer. As Chaturvedi et al say in a recent paper: “If recent incidence trends continue, the annual number of HPV-positive oropharyngeal cancers is expected to surpass the annual number of cervical cancers by the year 2020.”
I get to see this problem from two angles: From my work as the the manager of the MGH/MEEI Head and Neck Cancer Database, and from my experiments in using computer telephone messages to get patients in for preventive health services, such as the fabulous HPV Vaccines: Cervarix (from GlaxoSmithKline) and Gardasil (from Merck). The vaccines are incredibly underutilized. Only about 1% of eligible boys and only 50% of eligible girls get one shot. Only about 25% of girls get all three shots.
Now here is a novel idea to save lives and stop the cancer plague; stop trying! Sounds as crazy to me, as it does to you, but this idea actually may have merit. Some smart people are saying that we have spent too much money for little gain, thus it is time to give up and by retreating win more battles in the war on cancer, than by charging ahead.
The Cancer Prevention and Research Institute of Texas (CPRIT) is the second largest cancer research agency in the United States, after the National Cancer Institute, controlling a pot of $3 billion dollars, most of which funds basic science and clinical research. At recent hearings, university scientists and leaders in biotech proposed that CPRIT cut back on the money it is pouring into laboratories. As Professor John Hagan of the University of Texas proclaimed, “If people didn’t get cancer in the first place, CPRIT would accomplish much of its mission.”
This radical idea was echoed in a scary article in the September issue of Lancet Oncology, entitled “First do no harm: counting the cost of chasing drug efficacy.” This editorial reviewed data, which shows that between 2000 and 2010 many new cancer drugs produced marginal extensions in survival and simultaneously increased risk of treatment associated death and side effects. The Lancet authors emphasized the vital need as we develop new therapies to carefully measure both benefit and harm before FDA approval and for careful post-marketing follow up after drugs are released to the general population.
Now in reality no one is saying that we should shut down cancer research labs and simply hope for the best. Eventually we will completely cure this disease and basic science, as well as the development of new therapies, is key to that future. Perhaps what we should hear from these words is an idea about a different balance in health and healthcare.
2012 has been a challenging year for me.
On the personal side, my wife had cancer. Together we moved two households, relocated her studio, and closed her gallery. This week my mother broke her hip in Los Angeles and I’m writing from her hospital room as we finalize her discharge and home care plan before I fly back to Boston.
On the business side, the IT community around me has worked hard on Meaningful Use Stage 2, the Massachusetts State Health Information Exchange, improvements in data security, groundbreaking new applications, and complex projects like ICD10 with enormous scope.
We did all this with boundless energy and optimism, knowing that every day we’re creating a foundation that will improve the future for our country, communities, and families.
My personal life has never been better – Kathy’s cancer is in remission, our farm is thriving, and our daughter is maturing into a fine young woman at Tufts University.
My business life has never been better – Meaningful Use Stage 2 provides new rigorous standards for content/vocabulary/transport at a time when EHR use has doubled since 2008, the State HIE goes live in one week, and BIDMC was voted the number #1 IT organization the country.
It’s clear that many have discounted the amazing accomplishments that we’ve all made, overcoming technology and political barriers with questions such as “how can we?” and “why not?” rather than “why is it taking so long?” They would rather pursue their own goals – be they election year politics, academic recognition, or readership traffic on a website.
As many have seen, this letter from the Ways and Means Committee makes comments about standards that clearly have no other purpose than election year politics. These House members are very smart people and I have great respect for their staff. I’m happy to walk them through the Standards and Certification Regulations (MU stage 1 and stage 2) so they understand that the majority of their letter is simply not true – it ignores the work of hundreds of people over thousands of hours to close the standards gaps via open, transparent, and bipartisan harmonization in both the Bush and Obama administrations.
Diagnosed with metastatic esophageal cancer on June 8, 2011 Christopher Hitchens found that he had been transported to a foreign place. Until his death 18 months later the award winning author picked up pen and wrote about his travels in a “new land” where everyone “smiles encouragingly,” “where the cuisine is the worst of any destination” and where a language is spoken that “manages to be both dull and difficult.” The recently published book “Mortality” is his voyage into “sick country,” a place we will call CancerLand.
The idea of moving far away is also described in Chet Skibinski’s 2012 diary-like book, “Cancer Country. “ “On May 15, 2008, I stepped into a foreign country” with freakish rules and disturbing customs. Skibinski takes the reader along on his journey though several years of complex care and metamorphosis, not only medical, but also social, spiritual and personal.
CancerLand is a place not only of a body which visits hospitals, clinics, subjected to knives, drugs, x-rays and deconstruction by machine, but it is a destination of mind, where confusion, isolation, and fear transform knowing, growing and comfort in a bizarre, painful, spinning world which tries to break down the soul to yield suffering. As both patient authors note, it is a transit from which it is difficult to return.
Cancer patients are cast out from safety, stability and control to a state of danger, chaos and subjugation. Understanding the disease process as a distinct place, with strange language, customs and goals provides clues to the survival of body and mind. Seeing CancerLand as an unwelcome Kafkaesque journey may help us fight the disease and adjust to the changes that occur.
[youtube width=”475″ height=”300″]http://www.youtube.com/watch?v=5ESWiBYdiN0[/youtube]
TED Fellow Salvatore Iaconesi released this video along with his digital medical records – everything from CT and MRI scans to lab notes. He posted the health files to invite the online world to participate in the process of treating his brain cancer. As he wrote on his website:
This is my OPEN SOURCE CURE. This is an open invitation to take part in the CURE. CURE, in different cultures, means different things. There are cures for the body, for spirit, for communication.
Grab the information about my disease, if you want, and give me a CURE: create a video, an artwork, a map, a text, a poem, a game, or try to find a solution for my health problem. Artists, designers, hackers, scientists, doctors, photographers, videomakers, musicians, writers. Anyone can give me a CURE.
Create your CURE using the content which you find in the DATI/DATA section here on this site… All CURES will be displayed here.
News organizations used Dr. Judah Folkman’s death to report on his decades-long cancer research career. Given his status as a distant, non-celebrity, non-Nobel surgeon, you may be asking yourself why you, personally, should care about his death. Here’s why.
We were in our second year of medical school, feeling the growing pressure of clinical years just around the corner, when we would be thrown into the hospital system. For now, we had lectures in a large hall with 130 students sitting in chairs that sloped down to a stage. Professors came with presentations and handouts and complex diagrams. The immunology lectures were continuous strings of letters and numbers, with only the occasional verb, impossible to decode as human speech without months of training. Every tissue, every disease, every human physiologic function was discussed, down to the sub-molecular level. After hours of these lectures, the air would get stale and backs would ache and the squeak of weight shifting in chairs would become a metronomic beat marking out time that seemed to pass endlessly.
Then, one day, Dr. Folkman walked on stage. He asked us to put down our pens. He said he was going to teach us something that no one else would ever discuss, much less teach. I can’t imagine what he was thinking as he looked out on the sea of our faces. Give or take a few years, almost all of us were twenty-four years old. Almost all of us were single, ambitious, untouched by any of the major human experiences—no children, tragedies, severe illnesses or grief. The youth, the arrogance, the lack of world experience, all of it had to be a daunting, uninspiring sight. Dr. Folkman knew that in mere months, we would be keepers of information that would profoundly change lives. Pathology reports, cancer diagnoses, even the death of a loved one, those were all things we would be telling vulnerable people. Our actions and our words would be often unsupervised, particularly when disaster struck in the middle of the night.
Two recent research papers remind us that it may be difficult to cut U.S. healthcare spending without harming quality. The first, written by a research team led by University of Chicago economist Tomas Philipson, appears in the latest issue of Health Affairs and has deservedly garnered a fair bit of media attention. The authors examine cancer spending and survival times for patients in the United States and ten European countries during the period 1983-1999 (later data were not available.) Their data confirm what we already know about health spending; the average cost of treating a cancer patient was about $15,000 higher in the United States. But the data also show that the typical U.S. cancer patient lives nearly two years longer; most of the difference is attributable to prostate and breast cancer patients. The gain appears to be due to greater longevity rather than early diagnosis. Using generally accepted measures of the value of a life, they conclude that the benefits of additional health spending outweigh the costs by a factor of 4:1 or higher. The latter calculation does not consider QALYs (quality adjusted life years) and so may be overstated. The authors acknowledge that other nations may do a better job of cancer prevention, so that their overall approach to cancer may be superior to that in the U.S., but they can find no evidence of this one way or another.
Philipson’s study suggests that U.S. healthcare consumers may get a substantial bang for their higher bucks. Maybe the U.S. system is not so inefficient after all. What about efficiency within the U.S. system? Some providers are far more expensive than others. Is the higher cost worth it? A new study by a team led by MIT economist Joseph Doyle, and released as an NBER Working Paper, suggests that you may get what you pay for within the United States. Doyle and his colleagues ask whether higher cost hospitals in the United States achieve better outcomes than lower cost hospitals. It is not easy to answer this question, because higher cost hospitals may admit more severely ill patients. This results in a statistical problem known as selection bias that is difficult to eliminate with available severity measures.
What could be more pressing than ending suffering and death from cancer — a disease that kills 155 people every day in California?
A yes vote on Proposition 29 on June 5 to increase the tobacco tax by $1 will save lives from cancer and other lethal diseases caused by tobacco, protect kids from the tobacco industry’s predatory marketing, ease the enormous economic burden of tobacco use on the state and fund groundbreaking medical research on the leading killer diseases.
Yes on 29 is an opportunity to tell Big Tobacco that enough is enough. That we’re tired of the industry’s relentless assault on our children, our health and our economy. Proposition 29 was written by the state’s leading public health groups – the American Cancer Society, American Heart Association and American Lung Association – to empower Californians to fight back against Big Tobacco’s ongoing campaign of addiction and death. Proposition 29 will also help reverse tobacco’s debilitating drag on California’s economy, saving the state billions of dollars in health costs.
The tobacco industry spends every minute of every day surreptitiously recruiting new customers: our kids. During the past decade, Big Tobacco invested 10 times more on marketing its deadly products in California than the state spent on educating the public about its harmful effects. The tobacco industry spends more than $650 million each year targeting our state with deceptive marketing designed to recruit their next generation of customers – and has already spent nearly $40 million to distort the truth on Proposition 29.
The industry’s efforts are devastatingly proficient: California’s kids buy or smoke more than 78 million packs of cigarettes each year. Nearly 90 percent of the smokers in California started smoking before their 18th birthday.
[youtube width=”520″ height=”270″]http://www.youtube.com/watch?v=dtNMA46YgX4[/youtube]
Supporters of the Big Data movement argue that data will change everything, but only once we break down the institutional and technological barriers that prevent us from getting at it. In his talk at TEDMED 2012 at the Kennedy Center, Stanford’s Atul Butte argues that the we already have more than enough to do real science, if only we know where to look.