You can walk into a pharmacy any day and buy a test kit to find out if you are ovulating so that you can undertake family planning activities. You can buy home testing kits to screen for high cholesterol, presence of the HIV virus, even illicit drug use. You can also pony up $500 and buy yourself a genetic test kit from 23andMe, a retail DNA testing service, to find out what might be in your genetic blueprint. Hey, you can even visit a fortune teller if you feel that is how you want to make pre-emptive healthcare decisions.
While some might look askew at how you get information to make choices about your life, it is rare that someone steps in and tries to stop you from doing so. In general, the American way is to say, “Hey, you’re an adult and it’s your life. If you want to engage in self-actualization, whether or not it has a scientific basis, that’s your beeswax.”
As medicine has evolved to a point where over-the-counter testing has become more and more accessible, many consumers have responded to the perceived advantages of privacy, convenience and the heightened ability to make health decisions early. In fact, these are part of the key principles espoused by those who believe that consumers have a right to their own healthcare information. The idea is that the information is about you, the healthcare consumer, and thus should be both readily available to you and yours to do with what you wish. And yet, that is not always the case. Often it’s not even close. Continue reading…
At New York-Presbyterian Hospital, we’re building technology and influencing policy that will shape the future of health care delivery. Visionary executive leaders are driving momentum in the movement toward a connected health information technology environment—the next frontier in modern medicine. Empowered patients, equal-access care— you can help Make It Possible.
Director – Technology Policy Development The Director of Technology Policy Development provides executive leadership for technology-related policy initiatives. Reporting to the Vice President of Government Relations and Strategic Initiatives, you will lead and strengthen advocacy for our world-class university hospital.
The job will interface between the policy world and hospital operations. You will scope out the legislative and policy environment for HIT, advise on proposals to receive governmental and other third party funding, help initiate new funded projects and support the VP in advocacy. Qualified candidates must have a bachelor’s degree along with a minimum five years’ related experience. A master’s degree is preferred. Your experience must include knowledge of advocacy programs as well as health care-related project management. Experience with policy and government is also required.
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The recent history of electronic medical records in ambulatory care, or what we now call EHR (electronic health record) technology, can be divided roughly into three phases. Phase I, which lasted approximately 20 years, from about 1980 to the early 2000’s, was an era of exploration and early adaptation of computers to outpatient medicine. It coincided with the availability of PCs that were cheap enough to be owned by many doctors, and with the increased capacity of off-the-shelf software programs, mainly spreadsheet and database management systems such as Lotus, Excel, Access, and Microsoft’s SQL, to lend themselves to computerized capture of health data and information. Phase II coincided roughly with the American Academy of Family Physician’s (AAFP’s) commitment to health IT as a core competency of the organization, and with its support/promotion of the early commercial vendors in the Partners for Patients program, a national educational campaign inaugurated in 2002 which involved joint venturing with vendors that included Practice Partners, MedicaLogic, eClinicalWorks, and eMDs, among others. Several other physician membership organizations joined this effort to popularize EMRs, or crafted their own education programs for their members based on the AAFP’s model. The most popular Phase II products were, and still are for the most part, client-server software applications that run on local networks and PCs within the four walls of a practice, and tend to use very similar programming development tools, back-end databases, and support for peripherals such as printers. The industry grew, albeit sluggishly, from roughly 2002-present in an unregulated environment, with increasing support from quasi-official industry groups like HIMSS and CCHIT, and with the blessing of many professional organizations, including the AAFP, ACP, AOA, and the AAP. Best estimates are that the numbers of physicians using EHR technology from a commercial vendor roughly tripled during this period, from about 5% of physicians to about 15%. The Bush administration gave moral support to the industry, but did not provide funding or payment incentives, and mostly left the industry to itself to sort out the rules, including certification. The industry is now entering a new phase, one we predict will significantly depart from the previous two eras.Continue reading…
Be careful what you wish for. That is the unexpected lesson of the past decade of biomedical research, which has been characterized by an overwhelming abundance of interesting things to study and powerful ways to study them. A pioneer of this era, MIT geneticist Eric Lander, speaks eloquently of the “global view of biology,” meaning that scientists now have extraordinary tools to study not only individual genes, but also multiple genes at the same time. Rather than immediately investing all their resources in a few favorite genes (the traditional approach), modern researchers first can survey thousands of initial candidates, then identify and ultimately direct their attention to the most important players and pivotal networks.But we are increasingly discovering that this global perspective comes at an unexpectedly steep price: We’re making a lot more mistakes. Or, at least, we seem to be having a lot of trouble picking out the rare, meaningful signal from the deafening noise in the background.
Yesterday we tried to put EHRs into perspective. They’re important, and
we can’t effectively move health care forward without them. But they’re
only one of many important health IT functions. EHRs and health IT
alone won’t fix health care. So developing a comprehensive but
effective national health IT plan is a huge undertaking that requires
broad, non-ideological thinking.
As we’ve learned so painfully elsewhere in the economy, the danger we
face now in developing health care solutions is throwing good money
after bad. We don’t merely need a readjustment of how health IT dollars
are spent. We need to reboot the entire conversation about how health
IT relates to health, health care, and health care reform. To get
there, we need to take a deep breath and start from well-established
and agreed-upon principles.
Most of us want a health system that, whenever possible, bases care on
knowledge of what does and doesn’t work – i.e., evidence. We want care
that is coordinated, not fragmented, across the continuum of settings,
visits and events. And we want care that is personal, affordable and
Most of us also agree that, so far, we have not achieved these ideals.
In fact, health care continues to become costlier, quality is spotty,
and the gap between the health care we believe possible and the current
system is widening.
advocacy groups, most of them drug industry-funded, have asked
President-elect Barack Obama to appoint a Food and Drug Administration
commissioner who won’t cave in to pressure from lawmakers or the news
media, according to the Wall Street Journal.
It is news to me that the news media has much say about decisions at
FDA. There are reporters who highlight problems, especially safety
problems, in the nation’s food and drug supply. And there are reporters
who highlight every study suggesting the next miracle cure is just
around the corner. Large news organizations like the New York Times
have both. For every Gardiner Harris, there is a Gina Kolata. The news
media are megaphones. They are not, to use someone else’s phrase, the
Vioxx and Avandia didn’t come to light because of the press or angry
legislators on Capitol Hill. What consumers and patients, legislators
and the press learned about the lethal side effects of those drugs was
due to diligent researchers like Steve Nissen and Eric Topol and
courageous whistleblowers inside the FDA like David Graham. Ditto for
most of the other safety scandals that have plagued the agency in this
That said, patient advocates who are worried that the agency under a
more safety-conscious commissioner will somehow abandon the search for
faster cures should know that their views are well represented inside
the transition team. Josh Sharfstein, the Baltimore health
commissioner, formerly on Rep. Henry Waxman’s staff, who took up cause
of making pediatric cold medicines safer, may be leading the effort.
But his co-conveners include Greg Simon, who heads a group called . . .
da da . . . Faster Cures (not industry-funded, according to Simon). The
other team leader is attorney Alta Charo from the University of
Wisconsin, whose expertise is primarily in bioethics, not drug safety.
On Dec. 6, President-elect Obama announced the
three major pillars of his economic recovery plan: rebuild our
roads/bridges, enhance our schools including broadband, and deploy
electronic health records for every clinician and hospital in the U.S.
I can summarize all my advice to the new administration in one sentence: Allocate
Federal funds of $50,000 per clinician to states, which will be held
accountable (use it or lose it) for rapid, successful implementation of
interoperable CCHIT certified electronic records with built in decision
support, clinical data exchange, and quality reporting.
I’m on clinical service now and my patients are dying left and right. And I’ve never been prouder of my own care, and that delivered by my colleagues and hospital.
When I was in training, a patient’s death was invariably considered a medical failure, and thus an occasion for shame and silence or “the outcome that must not be named.”
We treated it coldly. We might dissect a death case in an M&M conference (“Why didn’t you start heparin at this point?”), but I can’t remember ever seeing an attending role model an end-of-life discussion with a patient or family, talk about palliative care on rounds, or work with a multidisciplinary team to ensure that a patient’s last days or weeks were pain free and dignified. The dying patient was the Elephant In Our Room, but we stayed huddled in the other corner, where medicine was clinical, safe, and emotionless.
A profound change in this sad state of affairs has been gaining momentum over a generation. The hospice movement began in England in the 1960s under the tutelage of Dame Cicely Saunders, and ultimately was embraced in the US, spurred on by Kubler-Ross’s landmark book, On Death and Dying. The first mention of palliative care in the English language medical literature came in 1956, with hospice first described 7 years later. But these movements remained far outside the American mainstream well into the 1980s.
In the hospital, recognition of the absurdity of the Full Court Press in patients with poor prognoses led to a major focus on Do Not Resuscitate orders in the 1980s. This was my first research interest – as a UCSF resident in the mid-80s, I cared for scores of AIDS patients with pneumocystis pneumonia who died terrible deaths in the ICU. Working with my wonderful faculty mentors Bernie Lo, Phil Hopewell, and John Luce, I began investigating their mortality rates and how we could make better and more informed decisions regarding CPR and mechanical ventilation [for example, see here and here].
But in the hospital world, these twin trends – hospice on the one hand, and decision-making regarding CPR and mechanical ventilation on the other – remained strangely dissociated. The movement promoting compassionate care for dying patients was largely community-based and tended to focus on patients dying slow and painful deaths – mostly those with terminal cancer. Meanwhile, in the hospital we were exploring the senselessness of “doing everything” for (or, more to the point, to) patients with poor prognoses, troubled by seeing lives end so violently, stripped of all dignity. But we spent virtually no time thinking about how to bring hospice-like sensibilities and resources into the hospital. Frankly, as I think back, many of us saw that work as being a bit too touchy-feely for our tastes. We were doctors, after all, not social workers.
This was a profound failure of both imagination and conscience, and it led to the emergence of a thriving underground economy in death. In a 1998 study, Tom Prendergast and John Luce demonstrated that most of the patients who died in American ICUs had some portion of their care withdrawn or withheld. This was a shocking finding, particularly since few caregivers talked about this common practice openly, fearful of being sucked into the public broo-ha-ha surrounding euthanasia and Right to Life. But the silence came with a terrible price: Nobody was ever taught how to do this well, and the medical literature simply airbrushed out the practice.
But the larger tragedy of our failure to embrace palliative care as a legitimate discipline was that by continuing to view death as a failure, we failed to gain the expertise and garner the resources to promote affirmative conversations with patients about alternatives to aggressive care. Sure, we might close the curtains, bump the morphine, and allow the patient whose care was near hopeless to pass peacefully, but we virtually never spoke openly with patients or families about how a focus on comfort might be a better way to complete one’s life.
This has been the magic of the palliative care movement. By naming and legitimizing the field, defining its competencies, promoting research, and training experts, we have made clear that this part of medicine is a crucial part of being a great doctor. (I can’t go on without paying tribute to several foundations, particularly Robert Wood Johnson under the leadership of my colleague Steve Schroeder, and Soros, for seeing this need and supporting it with real money).
The results have been spectacular. Today, when a patient is admitted to UCSF Medical Center with a potentially terminal illness, we spend less time on a narrow and largely irrelevant discussion about “would you want us to shock you if your heart stops” than on a much broader dialogue about two different philosophies of care: doing everything to keep you alive longer, with all of its attendant burdens (not to mention costs, but that’ll be a subject for another day), versus focusing on keeping you, and your loved ones, as comfortable as possible during your final days. We have that discussion now because a) we’re all much more at ease with the concept; b) we are now relatively well schooled in how to conduct these conversations; and c) we can bring to bear resources and experts to help us out – both in having these discussions and in implementing the plan when patients and families choose comfort over cure.
Which brings me to our Palliative Care Service (PCS), which I’m proud to have live within my Division of Hospital Medicine at UCSF. (Parenthetically, since most American patients die in hospitals – Oregon is the only state in which they don’t – the marriage of the fields of hospital medicine and palliative care is one literally made in heaven; that so many hospitalists are interested in palliative care, and visa versa, is a source of great strength for both fields.) Launched a decade ago by “the Two Steves” – Pantilat and McPhee – our Palliative Care Service has utterly transformed the way we practice medicine. In fact, I could no more imagine how a modern hospital could function without a robust palliative care service than I could without a strong cardiology service.
Whenever I call the PCS to help care for one of my patients – as I’ve done several times this month – I am always awed by my colleagues’ skill and compassion, and the practical help they, the PCS-trained nurses, and PCS social worker Jane Hawgood, bring to bear at times of great need. And every time they are involved in a case, my medical students and residents, and the ones rotating on the PCS (which – as one small measure of the transformation – has become one of the most popular electives at UCSF) broaden their definition as to what it means to be a great doctor.
Back to my team this month – in the past two weeks, we’ve had 5 patients die out of about 25 admissions, a 20% mortality rate. And I couldn’t be prouder of the way we managed the patients’ care, our communication with the patients and their families, and the tears that we’ve all shed along the way. At one point or another in virtually every case, family members hugged me, members of my team, or members of the PCS and thanked us for our wonderful care – this at the most horrible time in their lives. It is uniquely sobering and gratifying.
We are entering a world in which case-mix adjusted mortality rates will be reported on the Web – and what other “quality” data could possibly resonate more deeply with the public? But I always recall the amusing story that arose from New York’s early experience with mortality reporting. About 15 years ago, goes the tale (probably part apocryphal), the state began publishing hospital mortality rates, and one local newspaper decided to republish the results. Of course, someone must be the worst – in this case, it was an upstate institution with a mortality rate near 75%! The paparazzi flocked like locusts to this small institution and set up their sea of boom microphones and klieg lights on its front lawn. Shoulders slumped, the hapless director trudged out to the mikes to answer questions about these shocking data. “We’re a hospice,” he said simply.
Sure, in some cases a high mortality rate will be a marker of poor doctoring or dysfunctional systems. But sometimes it will demonstrate that a caregiver sat down with a patient and her family, honestly discussed the alternative ways of providing care, listened carefully to both facts and emotions, offered resources to orchestrate a “good death,” and shed a tear with the family when the terrible time came. We’d better be awfully careful about creating a set of incentives that stands in the way of that kind of medicine.
So on this Day of Thanksgiving, this is what I’m giving thanks for – to be practicing in an institution, in a specialty, and in an era in which this kind of care is recognized and celebrated for what it is: medicine at its finest.
Two recent events made me think about how traditional medical care and medical education address the issue of compassion.
The first was at the annual dinner for the Kenneth B. Schwartz Center when they gave out their annual Compassionate Caregiver Award, and reviewed the accomplishments of previous awardees. These individuals have all made remarkable differences in the lives of patients and families through their empathy and personal connections.
The second event was reading about the passing of Florence Wald, the former Dean of Nursing at Yale who organized the first hospice in the United States in 1974 because of her interest in compassionate care at the end of life.
While there has been much discussion about:
Shortages of primary care clinicians
How medical school graduates are increasingly going into specialties
Medical schools are thinking of replacing the requirement that applicants have taken organic chemistry with requirements for more biochemistry or genetics
A survey of physicians finding that over the next three years 49% plan to reduce the number of patients they see or stop practicing entirely, and 60% would not recommend medicine as a career
All these relate to the structure and content of physician education and training. And I have two proposals:
First, while medical school education has progressively shifted from teaching in hospitals to more out-patient and community care, I think doing more to show medical students and residents the rewards of community primary care would be a good step for increasing the number and prestige of primary care clinicians.
And second, while medical schools require students to go through rotations in pediatrics, Ob/Gyn, medicine, surgery and psychiatry, I don’t know of any that require students to go through a hospice rotation. This may be because medicine and society try to discount death as a failure, but a hospice rotation would be a great opportunity for teaching students about empathy and compassion, and shifting the discussion of death within the context of medical education so that it is viewed more as part of the continuum of life. In addition, having medical students in a rotation where they are not reporting to (and trying to impress) senior physicians, but rather working with nurses and social workers, also might provide them with a better perspective on teamwork in healthcare delivery – as well as a dose of humility.
The value of hospice (or palliative care) rotations for students does seem to be growing. An article from 2006 reported that the University of Arizona was thinking about requiring a hospice rotation. And the American Association of Medical College’s web-site has an article from 2004 about how Mt. Sinai has integrated palliative care into their curriculum.
Does anyone know of any medical schools that require hospice rotations for medical students or have integrated these types of programs into their core curriculum? (BTW – A major focus for the Schwartz Center is grand rounds and other educational programs about compassionate care and patient-caregiver communications for both established clinicians and students.)
And lastly, it should also be recognized that expanding young physicians communications and empathy skills should help them work better with their patients, (and patients’ families), which could help reduce unnecessary and costly care.
Dr. Michael Miller started HealthPolCom Consulting in 2000 after 12 years in health policy positions in Washington, DC. He works with an extensive network of policy and communications consultants. He blogs regularly at Health Policy & Communications, where this post first appeared.
I’ve got news for the folks doing the International Foundation of Employee Benefit Plans’ survey: Smaller businesses, especially those defined as true small businesses with two to 50 full-time employees, are strapped beyond belief when it comes to paying ever-higher premiums for health care.
Across the board, the 100+ businesses I represent, all of them two to 50 full-time employees, have received increases between 13 percent and 75 percent this year. The average has been around 20 to 24 percent. That’s on top of more than 15 percent average increases last year, the year before, and the year before.