The Lybbaverse / research  

Lybba Mindwalks with IHI faculty

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How can we expand our capacity to collaborate? What new opportunities can we find to change the landscape of health care if we work together to develop innovative solutions?

The Institute for Healthcare Improvement (IHI) Research and Development Team, with support from the Robert Wood Johnson Foundation, in partnership with LybbaCincinnati Children’s Hospital Medical Center, and a number of stakeholders and thought leaders has been designing a regional network to address these questions. The goal is to ensure regional improvement initiatives can share knowledge and accelerate progress towards improving health and health care at affordable cost.

The aim of this year’s IHI Faculty Mindwalk conference, to be held on December 9 in Orlando, is to deepen understanding of the structure of networks and features that make them vibrant and sustainable, and address the challenges we face. With this conference, IHI takes an inward glance at one of its most critical networks: the IHI faculty community, linking approximately 550 individuals who lead and support IHI’s work in a broad range of improvement issues. 

Lybba will be presenting a talk on C3N called "A Case Study of a Living, Breathing, Learning Health Care System" and share the belief with IHI that there is much potential among faculty to catalyze collaborative learning, innovation, and change.

Better, cheaper cancer drugs: UCSF-led national breast cancer research helps pave new regulatory path

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Cancer drug development is known to be slow, costly, and fraught with failure. Now the U.S. Food and Drug Administration has issued recommendations for breast cancer trials that would substantially accelerate patient access to new medications while lowering the time and cost of drug development. The new regulatory guidelines are based in part on groundbreaking, national breast cancer research led by UCSF.

The FDA “draft guidance”, issued last week, is aimed at helping medical researchers gain swift approval for promising drugs in the early stages of development for breast cancer. The new approach is based on a trial design being tested in a clinical trial model known as I-SPY 2, launched by UCSF in conjunction with a private-public partnership that includes the FDA, the National Institutes of Health, pharmaceutical companies, and academic medical centers. 

I-SPY 2 combines personalized medicine with a novel investigational design to identify women at high risk of early breast cancer recurrence. It is underway at 19 major cancer research centers around the country.  

Traditionally, patients with early-stage breast cancer must wait years to receive new cancer drugs, which are generally tested first in patients with later stage metastatic disease and approved for use in more curable, early stage cancer only after additional clinical trials. It can take more than a decade to bring a new cancer drug to the market and cost more than $1 billion. 

The new FDA recommendations would speed up approval of drugs tested prior to surgical removal of tumors in certain types of high-risk patients with localized, early stage disease. The guidance centers on neoadjuvant therapy for breast cancer, which is the administration of therapeutic agents prior to surgery.

The FDA said it may now grant approval to medications that have shown clinical benefit, based on data from patients receiving this type of neoadjuvant treatment whose invasive cancers have disappeared by the time of surgery.

In I-SPY 2, a patient’s cancerous tumors are left in place for approximately six months, rather than being immediately removed surgically. Several new agents are tested in combination with standard chemotherapy in an effort to improve the chance of the tumor shrinking and completely disappearing before surgery in women with high risk breast cancer.

The trial is designed to learn which patients will have the most benefit from new, targeted therapies, to help speed access under the FDA’s new guidelines. Overall, I-SPY 2 can test new treatments in half the traditional time, and with significantly fewer participants, to dramatically lower costs.

Scientists from the National Cancer Institute, FDA, pharmaceutical and biotechnology companies, as well as breast cancer patient advocates, also contributed to the design of I-SPY 2, managed by FNIH and Quantum Leap Healthcare Collaborative with support from Quintiles, a global biopharmaceuticals service provider. For more information please visit www.ispy2.org.

Let’s take Access2Research over the 25,000 mark

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Many thanks for your support of Access2Research. Our petition received the 25,000 signatures it needs to move forward.

If you haven't signed the petition yet, please do before June 19, to continue to show the overwhelming support we've achieved to extend public access to all scientific articles emerging from taxpayer-funded research. We're sending the message to Washington that the people have a voice in this debate, not just the publishers. 

Be sure to take a look at the film above by SPARC (the Scholarly Publishing and Academic Resources Commission)  to learn more about Access2Research.

The End. Death in L.A. can be an odd undertaking.

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You've made some bargains. We all have. Maybe you allow yourself a single Tommy’s burger every six months. Maybe you’ve given up meat altogether, or red meat anyway, most of the time. Maybe you’re serious about this and you’ve given up all refined grains and any processed anything; the extra buck a pound to buy organic seems a reasonable sacrifice. You’ve given up booze, cigarettes, pills, cocaine, sex with strangers. You tell yourself you don’t miss them. You wear sunscreen and eat flaxseeds. You go to the gym on breezy Sundays when you’d rather lie around. You go to yoga classes even though the chanting makes you want the world to end. You sold your motorcycle years ago. You cross at the light and look both ways.

No matter how many sacrifices you make to Lady Death, no matter how rich the offerings you lay before her altar, she will know where to find you. When she comes, she will hold you tight, and she will never let you go. Don’t be frightened. She takes us all.

Even here in Los Angeles, in the glow of so much newness, she takes 60,000 of us each year. That’s 164 each day. Imagine them all lying side by side, napping forever without a snore. The sun goes down and rises again, and 164 more are sleeping beside them, resting cheeks on shoulders, ears on arms. One day you will join their still parade. Chances are good—about one in four in L.A. County—that death will grab you by the heart. Coronary disease is by far our leading cause of mortality, as it is in the rest of the country. L.A.’s specific inequities, though, travel as deeply through death as they do through life. In this and other ways, death maps life. If you’re an African American or a Latino male and you die before 75, you’re more likely to die of homicide than any other cause. The same goes if you’re of any race or either gender and you live in South L.A. If you’re white or live west of La Cienega and it’s not your ticker that gets you, it will most likely be an overdose, or a car crash, or lung cancer, or your own hand—murder is not even in the running.

Whoever you are and wherever you live, you will go. You will not be you anymore. Not exactly. You will be a corpse, a cadaver, a decedent, a “loved one.” You will be remains. The death industry employs more euphemisms than politicians do. Someone will find what’s left of you. A child, spouse, or parent. A nurse or passerby. Whoever it is will call for help. At home, at work, or in the street, he or she will dial 911. In a hospital, hospice, or nursing home, someone will call your doctor, who will check one last time for vital signs, declare you dead, and fill out the proper forms. A nurse will remove your clothes and close your eyes. (Not just for modesty’s sake: Rigor mortis hits the eyelids fast.) He or she will tie a tag bearing your name, which you can no longer speak, onto one of your toes, cover you with a plastic shroud, and wheel you to an elevator and thence to the morgue. In most hospitals it is in the basement. You will be rolled from the gurney into a refrigerated drawer. The door will close behind you. It will be dark and cold, but you won’t care.

Power Words

So here you are, dead and alone. Chances are you didn’t want this, but your wishes were ignored. Whatever happens to the part of you that you recognize as somehow quintessentially you (call it soul, self, spirit, spark), the other part isn’t finished yet—the fleshly part, the limbs and guts that ached and pleased you in so many ways, the meaty bits that you vainly or grudgingly dragged around for all those years. That piece is still of interest to the bureaucrats. It is still a potential source of profit. In your absence its journey is just beginning.

The path forks before it. Which way it goes will be determined by the cause of your demise. All the state wants is a death certificate: Think of it as a letter from your doctor excusing you from paying income tax forever. The county, though, wants to know why you died and if there might be a reason to push the cops and the courts and the jails into motion. The coroner holds the key to all that machinery. The key itself is what you once called you. If you have not been under the care of a physician for six months, if you die during surgery or as a result of injuries sustained in an accident or an assault (self-inflicted or otherwise), or if there’s any suspicion that your death might be something other than “natural,” your next stop will be the Los Angeles County Department of Coroner—which is, assistant chief coroner Ed Winter tells me more than once, the busiest such department in the country.

It investigates 18,000 deaths a year, dispatching 36 investigators to the far edges of its jurisdiction—from Lancaster to Long Beach and West Covina to Catalina Island, from oil tankers and cruise ships anchored off the coast to jets on the runway at LAX. One of those investigators will come to you. He or she (let’s go with she, because more often these days the investigators are women) will search your pockets for ID. If you are at home, she will nose around for medical records. She will interview relatives, witnesses to your final moments, and the police at the scene. She will photograph and examine you. You’ve seen this part on TV. When she has finished, she and a driver will load you into the rear of a white county van and take you on one last drive down one last freeway, through one last Sig-Alert, off that final off-ramp onto Mission Road. At the corner of Marengo they will pull into a driveway at the side of an elegant old brick building. They will open the back of the van, roll you out, and take you inside, where you will wait quietly in the coroner’s fridge until one of 25 overburdened pathologists is ready to examine you.

Winter, a 61-year-old goateed ex-cop with a cranky sort of charm, squints and counts the day’s cases on his computer monitor. It’s 9:30 in the morning. “Since eight o’clock, I’ve gotten one, two, three, four, five more,” he says. “Got an undetermined, a child. Got an accident, 63-year-old male. Another accident: unknown male Caucasian, 30 to 40, found unresponsive by passerby at a construction site. And an unknown male found floating in the ocean dressed in T-shirt and jeans, Pacific Coast Highway.” He stops reading and looks up. “We’re frigging always busy.”

It’s not just the dead. The telephone rings, and it’s a reporter. He has questions about Brittany Murphy’s husband. Winter puts the call on speakerphone and rolls his eyes. When Winter and I first met a few weeks earlier, he pushed a sheet of paper across his desk. It was an inventory of celebrity deaths the coroner’s office had investigated during the previous year. Michael Jackson’s name was listed twice.

In the lobby Winter introduces me to Lieutenant David Smith, a genial, dapper man of 46 with a white handlebar mustache, who supervises the department’s identification and notification division. Right now Smith’s mind is on other things. “Part of the issue I’m dealing with here,” he tells me in the elevator, “is extremely overweight bodies that have to be cremated.” By state law, if nobody picks you up after 30 days, you will be incinerated. In bureaucratese this is called “county disposition,” or “county dispo” for short. Smith located a private crematorium willing to kindle his uncollected dead, but it wouldn’t take bodies over 350 pounds. He found a mortuary in Orange County that wanted seven bucks for every pound over 350, but even it topped off at 400 pounds. “I had one the other day who was 710 pounds,” Smith says. The problem seems to have been solved: Odd Fellows Cemetery in Boyle Heights specializes in the incineration of the truly obese and charges a flat rate of one dollar a pound.

Again, death maps life. County budgets are tight, and more families can’t afford funerals. L.A. County will charge your next of kin $352 to pick up your ashes (cremains, if you prefer), which is about what Forest Lawn wants just to chauffeur you from your deathbed to its oven door. So more families than ever have to settle for the grim anonymity of “county dispo.”

Smith’s main responsibility is to identify you and notify your family that you have died. If the investigator sent out to the scene was unable to make a positive ID, you are for the moment a John or Jane Doe. These categories, Smith says, are further subdivided into “soft Does” and “hard Does.” You are a soft Doe if you were found locked in your own apartment, for instance, and the investigator is pretty sure you are you—but you are too decomposed for anyone to be certain. Your fingers are too far gone to yield prints, but Smith’s people should be able to confirm your identity through dental records or X rays. You are a hard Doe if you were discovered in an alley or in the trunk of a car and you didn’t have your wallet and there was no one around who knew that you were you. Then the only real options are fingerprint databases and DNA, and the latter is likely to be on record only if you’ve been convicted of a felony.

Once they’ve pinned a name on you, Smith and two other investigators will start looking for your family. If they turn up an address, they’ll send a letter out. If they find a phone number, they’ll call. “We notified somebody through MySpace one time,” Smith says. The phone calls can be tricky. Some people laugh on hearing the news. Some are apathetic. Some start screaming. “If the phone just drops, we call 911,” Smith says. “We don’t want another case.” Sometimes the next of kin are in denial. “You have to use the power words: ‘They’re dead.’ ”

. . .

Read the rest of this  Los Angeles magazine story that won the 2011 National Magazine Award from the American Society of Magazine Editors for feature writing, republished with permission from the author Ben Ehrenreich

The rise of the e-patient

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Lee Rainie, director of the Pew Internet Project,  presented a wonderful overview of the Project’s health findings at Providence St. Joseph Medical Center in Burbank, CA, on January 12Another summary of the research is the following tip sheet, compiled by yours truly. I plan to keep it updated, so bookmark Pew Internet: Health on pewinternet.org.

Internet access:

78% of U.S. adults use the internet (May 2011 survey). For more, see: Who’s Online.

83% of U.S. adults own a cell phone (May 2011 survey). For more, see: Gadget Ownership and Pew Internet: Mobile.

Online health information search:

80% of internet users, or 59% of U.S. adults, look online for health information.

This is based on a September 2010 survey, but it is a remarkably stable trend dating back to 2002. For more, see: Health Topics and Who Doesn’t Gather Health Information Online?

17% of cell phone owners, or 15% of adults, have used their phone to look up health or medical information.

This finding is of particular interest to those interested in trends related to young people, Latinos, and African Americans, since these groups are significantly more likely than other groups to have mobile internet access. For more, see: Technology Trends Among People of Color and Mobile Health 2010.

The most commonly-researched topics are specific diseases or conditions; treatments or procedures; and doctors or other health professionals. For more, see: summary charts of health topics.

Also, keep in mind that the typical search for health information is on behalf of someone else – information access by proxy.

Peer-to-peer healthcare:

Pew Internet is tracking overall trends in how the internet is changing people’s relationships with health information and with each other.

  • 34% of internet users, or 25% of U.S. adults, have read someone else’s commentary or experience about health or medical issues on an online news group, website, or blog.
  • 24% of internet users, or 18% of adults, have consulted online reviews of particular drugs or medical treatments.
  • 18% of internet users, or 13% of adults, have gone online to find others who might have health concerns similar to theirs. People living with chronic and rare conditions are significantly more likely to do this. See: Peer-to-peer Healthcare.
  • 27% of internet users, or 20% of adults, have tracked their weight, diet, exercise routine or some other health indicators or symptoms online.
  • 6% of internet users, or 4% of adults, have posted comments, questions or information about health or medical issues on a website of any kind, such as a health site or news site that allows comments and discussion.
  • 4% of internet users, or 3% of adults, have posted their experiences with a particular drug or medical treatment.

 

For more, see The Social Life of Health Information, 2011 and Medicine 2.0: Peer-to-peer Healthcare. Susannah Fox welcomes tweets (@SusannahFox) and emails (sfox at pewinternet dot org).