pandemic flu

Study: Public input can offer valuable insights during pandemic flu planning

kkrisberg — Fri, 23 May 2014 13:33:33 +0000

Study: Public input can offer valuable insights during pandemic flu planning

Despite our best preparedness efforts, a real-life flu pandemic would require some difficult and uncomfortable decisions. And perhaps the most uncomfortable will be deciding who among us gets priority access to our limited health care resources. How do we decide whose life is worth saving?

There are so many different ways to view such a scenario; so many different values and ethical dilemmas to consider. In the chaos of a pandemic, life-saving allocation decisions would not only impact the patient in question — the repercussions would likely ripple throughout families and entire communities. And yet, few disease preparedness efforts have systematically engaged in gathering public input about what kind of values we should use to guide these decisions. In response, a group of researchers set out to test their hypothesis that residents could, indeed, provide policymakers with meaningful input on these somewhat unpleasant questions. Their findings were recently published in the Annals of the American Thoracic Society.

“One of the big challenges in this arena is that there are a number of ethically appropriate ways to make these really tough decisions, but they’re not always consistent with the values of any given community,” Lee Daugherty Biddison, an assistant professor in the Division of Pulmonary and Critical Care at Johns Hopkins School of Medicine, told me. “People spend years of their lives studying bioethics…but can the average community member also provide us with meaningful feedback on these complex ethical issues? We thought that they could and we found that they did.”

Biddison was part of the team of researchers who examined whether the “democratic deliberative methodology” was effective in engaging residents on ethically challenging health care questions and whether those methods could elicit input that state officials could ultimately use to shape policy. Using the methodology, which requires citizen participation in open and informed conversations, researchers held five-hour community meetings in two Maryland communities with a total of nearly 70 residents. At the community meetings — one in affluent Howard County, Md., and the other in inner Baltimore City, where more than a quarter of families live below the poverty line — attendees were presented with a scenario in which a severe flu pandemic had overwhelmed Maryland’s critical care capacity. They were asked two main questions: What should we do in situations where there are more patients needing ventilators than there are ventilators to use? And should health care providers ever be allowed to remove a ventilator from one patient who needs it to survive and give it to another patient who also needs it to survive?

Interestingly, study co-author Alan Regenberg, director of Outreach and Research Support at Johns Hopkins Berman Institute of Bioethics, told me that the first reaction among many meeting participants was try to find a way out of having to ration medical care in the first place, such as asking if people can share ventilators or if more ventilators can be built. That’s what made ventilators such a good subject for conversation, Regenberg said — they’re expensive to manufacture, they don’t store very well in the long term and it’s plausible that we’ll run out in a pandemic.

“As the day proceeded and people understood the decisions that had to be made they were happy to contribute,” Regenberg said. “Many may have thought coming in that the experts could handle this…but they really came to realize that this is a tough issue and they’ve got just as valid an opinion on it as anybody else. It sort of empowered them.”

Biddison she was surprised at how quickly people grabbed hold of the concept and how willing they were to wrestle with these issues — “these are not comfortable questions,” she added. For example, some thought children and young people should be a priority, while others thought that elders and the wisdom they offer were an equally important part of the community.

“It’s really so important to get down and dirty in those conversations,” Biddison said. “At least then policymakers can respond to those values and communicate decision-making respectfully in the context of people’s values.”

In discussing the differences between the two communities, Biddison noted that individual experience drove the conversation. She and her study co-authors Regenberg, Howard Gwon, Monica Schoch-Spana, Robert Cavalier, Douglas White, Timothy Dawson, Peter Terry, Alex John London, Ruth Faden and Eric Toner wrote:

Comparing the two meetings, certain distinct concerns emerged that may be explained, in part, by the contrasting circumstances that the communities represent. People engage with medical ethics on the basis of their life experiences, social roles, political concerns and cultural beliefs. People’s moral perspective on medical practice emerges from what they have experienced and learned about the world, including relations of inequality, and not simply from abstract high-order values.

In particular, people at the Baltimore meeting — residents from a community with a high crime rate — talked a lot about whether certain people, such as convicted felons, shouldn’t have access to ventilators. They also “adamantly” felt that access shouldn’t be determined by a person’s ability to pay. Baltimore participants were also concerned about the transparency of the decision-making process and whether their input would be considered. The study noted that “such concerns would be well-founded among groups with historic reasons to question whether public policies represented the interest of disadvantaged people who are often politically marginalized.”

Among Howard County participants, logistical concerns were more common, the study found. Noting that Howard County residents had more exposure to disaster planning, researchers reported that they struggled with how much time decisions would take — in other words, “would someone die without a ventilator while decision-makers were still making up their minds?” Howard County participants were also concerned about fairness, recommending that officials use “science” or “statistical analysis” to make allocation decisions. Both community groups felt no single principle, such as prioritizing those most likely to survive, would be adequate to address the pandemic scenario.

Overall, the study found that the “deliberative democratic method provided a format for facilitating civil conversation that might otherwise be fraught with both misinformation and contentious debate.”

“I think there’s a lot of anxiety about what goes on in the ivory tower…and given the fact that we’re talking about a true disaster scenario in which everything has changed, it’s really critical to have established transparency and through that, public trust,” Biddison told me.

The study is part of a larger project to engage the public on the values that should guide officials in making health care allocation decisions in a disaster. Having found that the deliberative democratic method was an effective engagement tactic, Biddison said the next step is to synthesize public feedback into a report that, hopefully, will help shape state policy.

“Trust is going to be absolutely essential if, God forbid, we have to enact this kind of plan, and transparency will play a big role,” Regenberg said. “It’s essential that people trust in the fairness of the process.”

To read more about the study and the public engagement project, click here.

Kim Krisberg is a freelance public health writer living in Austin, Texas, and has been writing about public health for more than a decade.

kkrisberg Fri, 05/23/2014 - 09:33

Inside the Outbreaks

mpendergrast — Mon, 21 Jun 2010 11:03:59 +0000

Inside the Outbreaks

Mark Pendergrast writes: To kick off this book club discussion of Inside the Outbreaks, I thought I would explain briefly how I came to write the book and then suggest some possible topics for discussion.

The origin of the book goes back to an email I got in 2004 from my old high school and college friend, Andy Vernon, who wrote that I should consider writing the history of the EIS. I emailed back to say that I was honored, but what was the EIS? I had never heard of it. I knew Andy worked on tuberculosis at the CDC, but I didn't know that he had been a state-based EIS officer from 1978 to 1980 in Oklahoma.

When he explained that EIS stood for the Epidemic Intelligence Service, I was intrigued. Was there really an outfit with a name like that? As I learned more, I realized that I had the opportunity to write the first history of an organization that has had a profound impact on the way public health is practiced not only here in the United States, but across the globe.

This book took me nearly twice as long as any previous book, even though it covers a shorter time period than my other histories. (For info on all my books, see www.markpendergrast.com.) I could not have survived on the advance from the publisher, so I am extremely grateful to the CDC Foundation and the Josiah Macy, Jr. Foundation for the grants that made the book possible.

The project took so long because it involved so many characters and investigations, making it a challenge to write. I considered organizing it by disease or theme, with a chapter each on polio, cholera, chronic diseases, environmental health, or violence, for instance. But such an approach would have meant jumping around in time, and readers would have lost the historical context. Instead, I wrote the book chronologically, from Alexander Langmuir's creation of the EIS in 1951 to the present. That meant that most chapters contain a smorgasbord of investigations.

Thus, for example, Chapter 5, "New Discoveries and Mysteries in the Early Sixties," begins with the 1961 hepatitis A outbreaks traced to oysters in Pascagoula, Mississippi, and to clams in Raritan Bay, New Jersey, and then to intentional urination in potato salad at the officers' mess at Cecil Field Naval Air Station in Jacksonville, Florida. Then it shifts to hepatitis B traced to blood transfusions as well as to a New Jersey osteopath-psychiatrist who put IV drips into depressed patients to deliver tranquilizers, vitamins, and "energizers," cross-contaminating with hepatitis B by reusing the same tubing. Then the chapter jumps to salmonellosis due to raw eggs in cake mixes, which led back to chickenfeed made from contaminated fishmeal. Then I wrote about Salmonella hospital infections traced to nutritional drinks made with raw eggs. Onward from there to a remote Bolivian village to retrieve a particularly virulent plague bacillus for the Fort Detrick biological warfare scientists, followed by an apparent outbreak of lethal encephalitis among Guatemalan Mayans that stemmed from mercury fungicide on wheat seeds that the starving Indians had eaten. From there to leukemia clusters in Niles, Illinois, cholera in the Philippines, Reye syndrome in North Carolina, and finally, a section focusing on Alexander Langmuir in his prime. And that's all just one chapter!

Despite the book's disparate contents, there are narrative threads that weave throughout the book, some of which I will introduce here.

Alexander Langmuir himself provides one such thread. The founder of the Epidemic Intelligence Service was a visionary leader who put his personal stamp on the institution. "We'll get EIS officers on an epidemic as fast as we can," he said. "Throw them overboard. See if they can swim, and if they can't, throw them a life ring, pull them out and throw them in again."

The rituals and institutions that Langmuir established have proven to be remarkably hardy. The annual April conference is a case in point, a wonderful springtime introduction to Atlanta for new EIS recruits who can marvel at the amazing presentations - talk about a smorgasbord! - while being wooed and assessed (and simultaneously wooing and assessing) in this EIS version of a fraternity/sorority rush. They then return to Atlanta in the sweltering July heat for intense training, during which EIS officers make friends that often last a lifetime.

Diseases provide other narrative threads. Polio, for instance, is a major focus from the beginning, when EIS officers studied possible fly transmission, then put the EIS on the map during the 1955 Cutter Incident, when virulent live virus survived in some polio vaccines, thus paralyzing some recipients. I wrote about the 1962 decision to switch from the Salk killed injected vaccine to the Sabin oral live attenuated polio vaccine, the subsequent surveillance that revealed how children and their parents sometimes contracted polio as a result of the oral vaccine, the eventual decision to switch back to the killed vaccine in the United States, and the current pursuit of polio eradication that is tantalizingly close to success but is still frustratingly difficult.

Similarly, readers can follow threads throughout the book about malaria, Reye syndrome, Salmonella, diarrhea, smallpox, natural disasters, refugees and war, psychosomatic illnesses, problematical alternative medicines, E. coli O157:H7 and other foodborne pathogens, injuries, AIDS, Ebola, and many other health problems.

Another thread traces the evolution of more complex epidemiological methods, from simple description epi and cohort studies to case control studies, random sampling, and multivariate analysis.

Another is the impact of politics and global events on EIS investigations, from the Cold War fear of biological warfare that helped create the Epidemic Intelligence Service, to the Reagan administration's shameful neglect of AIDS, to the Bush and now Obama years. And on another level, there are the politics of the CDC and the Public Health Service. For years the CDC flew under most governmental radar, hiding out in Atlanta, but that ended with Legionnaire's disease and the national vaccination campaign against the swine flu epidemic that failed to materialize in 1976, which I covered in a chapter called "The Year of Living Dangerously." That year also introduced Ebola and Legionnaires' disease.

Unsolved mysteries provide another thread. EIS officers don't always break every case, at least not right away.

Yet another theme is the growing diversity of EIS officers. In the 1950s, most were white male physicians. Today over half are women, around a third are members of minority/ethnic groups, and a substantial number of officers arrive from other countries. Many are non-physicians.
Another thread in the book is how businesses sometimes put profits ahead of public health, as in the case of Reye syndrome and the aspirin industry or toxic shock syndrome and Procter & Gamble, which made the Rely tampon.

Other themes that thread throughout the book are: increasing microbial drug resistance to antibiotics, emerging infections, and the broadening EIS/CDC involvement in chronic diseases and behavioral factors such as smoking, drinking, suicide, and violence - and now looking at the public health impact of climate change.

Another theme that emerges throughout the book is that a disproportionate number of health problems afflict the underprivileged, the poor, the oppressed.

Yet another thread is the lesson that individuals, with their own particular interests and personalities, can make such a difference. There are many instances in which curious EIS officers or alums took on a problem and just wouldn't let it go.

In summary, let me quote from the book's epilogue, "The EIS Legacy," about the nature and importance of the EIS:

EIS alum Patrick Moore observed: "Most EIS recruits are not run-of-the-mill people. They aren't doing it to make lots of money. We really felt we were putting ourselves at risk, selflessly facing down bad diseases to help other people."

In the early years, most physicians joined the EIS to avoid the draft, but many remained in public health once they realized that they could have such a powerful impact on thousands of lives. That same realization occurred to latter-day officers such as Scott Harper, who observed: "Working as an EIS officer in public health was exciting, important, and satisfying. Whether investigating an outbreak or writing policy for vaccines, I had the opportunity to affect many more people's lives than a clinician seeing 30 people a day." Kay Kreiss recalled thinking, "This is the best job I'm ever going to have, with infinite backup and no administrative responsibility."

Scott Holmberg added: "Being dropped into an outbreak, given the authority to investigate it and do the detective work, then apply that knowledge to curbing the current outbreak and preventing future ones - there's no better work in the world. Wherever you go, everybody wants the same two things - peace and prosperity. It doesn't matter whether their lips are stretched and they are dyed blue, or whether they sit in front of a computer. They are worried about family, friends, tribe, nation."

I then went on to provide a quick summary of illustrious EIS alums and how they have influenced public health. I also wrote about EIS clones, the Field Epidemiology Training Programs around the world. And I concluded the book with these two paragraphs:

In 1951, Alexander Langmuir seized a Cold War opportunity to fund a small training program for young epidemiologists who would keep an eye out for biological warfare while responding promptly to unintentional epidemics. Today these EIS officers are the world's premier front-line disease detectives.

For an obscure government program, the Epidemic Intelligence Service has produced remarkable results. Perhaps it has done so in part by remaining relatively small, nimble, and flexible. One of the lessons of the EIS history is the impact that one person can have. Put creative, intelligent, well-trained, motivated individuals into the right environment, and the outcome can save lives and lead to vital careers. EIS officers and alums have had an impact far beyond their original numbers. Today, with global public health bedeviled by substantial threats, the life-saving work performed around the world by these shoeleather epidemiologists is more essential than ever. The EIS program and its offspring have, in short, influenced and defined how field epidemiology and public health are practiced on our planet.

So there's a somewhat scattered introduction to this book club discussion of Inside the Outbreaks. I look forward to hearing from readers and I anticipate an interesting, fruitful exchange.

Here is the only photo someone took of me in a village in Niger when I was following EIS officers there:

mpendergrast Mon, 06/21/2010 - 07:03

The Canadian Press: Lung damage in fatal swine flu cases more bird flu than seasonal flu: expert

ddobbs — Thu, 03 Sep 2009 09:19:41 +0000

The Canadian Press: Lung damage in fatal swine flu cases more bird flu than seasonal flu: expert

The damage done resembles that found in bird flu as well as 'acute respiratory distress symptom,' reports Branswell - the latter being a condition that can rise from a number of causes, and which kills 30% of those who get it. (That is, get ARDS, not swine flu.)

Yet more signs that this is a strange strain.

ddobbs Thu, 09/03/2009 - 05:19