Right breast cancer (Photo credit: Wikipedia)
The first time I wrestled with the issue of whether to get my breasts cut off, I was in my early forties. Partners in life, my breasts had done right by me. They delighted me in all their underwhelming adolescent glory. Then they’d been a source of panting, wriggling joy for so much of my adult life. They’d amazed me after pregnancy when I became a fount of Bessie-the-cow milk production. I could have fed a village — or at least a day care. I’d learned to love and laugh about my breasts, like many motherhood-survivors, because when it comes to your own body, the first casualty of giving birth is your dignity. Post-weaning, the second casualty is your cup size. I’d even written about (and claimed) that frustrating and fascinating sagging that occurs with vintage breasts like mine.
But there was a good chance, like for Angelina Jolie, that mine could be harmed by “faulty” gene.
Booby trap #1: When it comes to family history, how bad is bad enough?
The Affordable Care Act mandates that BRCA genetic testing be covered, when you have a higher risk of breast cancer. What is “higher”? That’s actually a tough question to answer. There are many useful risk calculation tools out there (here and here are two). Plugging in what was known at the time of my own genetic testing, my estimated lifetime risks were between 17%-26%. Bad, sure, but that’s a pretty big range, and, probably, a significant underestimate. Why?
First, my family in rural Georgia, like most of America, struggles with getting good consistent health care, as well as dealing with taboos around women’s health. So when I tried to map out a sprawling family history, there were large numbers of women who had or even died of “female troubles.” Where the heck does that go in a risk calculator?
Second, the current calculators don’t include the gamut of risk factors. Most are focused on breast cancer, with some including ovarian cancer, which are the risks for BRCA1 genes. BRCA2, however, also increases your risk of melanoma and pancreatic cancer. I’d had a nasty early-stage mole taken off while in medical school, and my mother’s mother died of pancreatic cancer. That’s not in a calculator anywhere.
Since I’m a doctor, and was aware of these caveats, I was able to have a detailed discussion with my provider about my risks, and get my genetic testing covered. Many other people with my exact same family history, might be told theirs wasn’t bad enough to qualify for the roughly $3,000 test.
Booby trap #2: Are you ready to act if your test is bad?
Shouldn’t we just screen everybody? There is an old medical rule-of-thumb: Don’t get a test, if there’s nothing you’re going to do about the result. Is that true, though? After all, isn’t a blood test just a blood test? Well, no. If you get a positive BRCA result, you can’t ever erase that from your mind, your medical record, your family, or even your world view. Just knowing your results can shift the psychological foundations of your life.
I thought I knew my priorities when I had my BRCA test. Like Angelina Jolie, I had young children that needed me. They climb into your bed on a Saturday morning and knee your belly as they crawl across you with their stacks of books, demanding you to “read!” Silky little arms snake around your neck, claiming you, your love, your time. Young children are wonderfully, gloriously oblivious to your importance to them. Hell, if losing my breasts was what was necessary to avoid breast cancer, I figured I was “done” with my breasts. I decided to get genetic testing, and I told everyone who cared that if it came back positive, I’d have both my breasts removed. I thought I was ready for that.
I believe getting tested is an act of claiming your choices and your future. However, I am not a huge fan of home-based testing for lethal-type genes – unless it is the only option. Testing is a difficult process. The pivotal time of pondering, arranging the test, then waiting for results, oppresses with a stagnant emotional turmoil that seethes under the surface. A quicksand of fatalism can drag you so far down you find yourself unable to do the minimum-necessary to care for your health. Partners help. Trained health care support helps. I can’t even begin to imagine having to walk a red carpet, facing the world of Internet trolls, as I grimly pushed ahead, day by day, carrying that burden while I waited for the results.
And then results arrive…
Booby Trap #3: Beware of both optimism and pessimism when you’re playing the numbers game.
In cost-effectiveness analyses, researchers try to put an exact number on how bad is bad. Human minds, however, balk at this concept. For example, if I told you there was a 2% chance you’d get breast cancer, you’d likely feel pretty good. If I said there was a 98% chance you’d never get breast cancer, you’d probably feel even better. But if I said you had a one in fifty chance of getting breast cancer – and to imagine yourself sitting in a room with 49 other people, waiting to see if your name would be called out as the one with the diagnosis, you’d be feeling pretty crummy. Yet all of those are the exact same risk.
When you get something rare, you get it 100%. Some of us probably looked at Angelina Jolie’s estimated 87% risk of breast cancer and thought, well, it’s not 100%. We can project ourselves into the 13% good result. Or we may freak and believe, in our heart of hearts that having the gene means we must already have cancer. Neither is true. So how can we live with this constant risk friction?
After looking at the numbers, I approach the issue in a more qualitative way. One option is the Worst Case Scenario approach. What is worse – having your breasts cut off, or having breast cancer? And, for many people, that answer is enough.
But sometimes you have to dig deeper, to ask questions such as: what if I cut off both my breasts, and I never got breast cancer, how would I feel? Or, what if I had my breasts cut off and I still got breast cancer – how would I feel? Or what if I chose to do nothing, never got breast cancer but lived my life in a state of perpetual fear?
This is an approach I call Drafting The Story. You are the protagonist-hero of your life and these are all drafts, of your story. Which narrative can you live with? Which one can you embrace? Angelina Jolie’s statement that she felt “powerful” was authentic because she chose her narrative.
Sometimes, in health care, it’s not the number-crunchers we need; it’s the story-tellers.
Booby Trap #4: Watch out for when a good result can be a bad result.
So what were my test results? And what happened to my beloved breasts? Things didn’t actually turn out how anyone would have expected.
First, I was BRCA negative.
The exploding relief that I felt should have been a warning sign that maybe I wasn’t quite as ready to cut off my breasts as my hyper-logical, algorithmic brain tried to say I was. But I ignored that warning sign and let myself just revel in the joy – joy for myself and joy for my loved-ones.
Second, so what did this mean for me long term, and for all people with higher risks of breast cancer whose BRCA tests are negative? Is there a risk to having a negative result? Well, as in many aspects of medicine, this question is complex and controversial. Those two forces – complex and controversial – are also warning signs that we, as a health care system, are likely to give inconsistent, suboptimal health care. When I got my negative BRCA test results, I tumbled right into those gaps in care, only to crash-land with an invasive breast cancer diagnosis several years later.
What can you learn about health, statistics, and decision-making from my experience? Stay tuned for Booby Traps, Part 2: Pitfalls of the mastectomy decision.
There’s a great post over at Diabetes Mine about the explosion in patient interaction and patient communities around social media. It’s well worth a read so you should head on over and take a look. Here’s an excerpt.
Everyone wants to know what the patient community is thinking these days. The explosion of social media and patient advocacy has fueled the desire for Pharma, device companies, health organizations and insurers to seek out our perspective and input — which is a wonderful development!
This is happening not just in diabetes, but across the broader spectrum of health conditions. But the Diabetes Online Community (DOC) does stand out, as it seems to be the only sphere in which patient advocates have joined forces and managed to engage closely with Pharma and industry watchers the way we do.
black and mucus filled lungs nearby (Photo credit: Let Ideas Compete)
Fifty Years of Lying
The first speaker at the 2012 American Public Health Association (APHA) conference’s two-hour session on tobacco was Ms. Sharon Eubanks, the RICO lawyer who successfully tried the tobacco industry for fraud under the Clinton administration. She described how that case was prosecuted, in order to share lessons learned when dealing with the tobacco industry. She said that, for many people, it is hard to believe that “fifty years of lying” occurred, and to grasp the lengths to which the tobacco companies are willing to go. The history of the civil case she directed is that in 1979, the tobacco industry was first prosecuted as a criminal case, which failed. Out of that trial, a huge amount of evidence and body of record was created. However, those many documents are still locked up and were not available to her group’s case. In September 1999, the Attorney General announced the launching of their civil case. The tobacco industry’s response was to deride the case. The issue is that legal “bad acts” may be permissible under the law. The justice department’s civil case intentionally was tried under a judge, and was not a jury trial. In essence, the case was a fraud case – that the tobacco industry was lying repeatedly, and that the evidence supported a presumption that, unless stopped, they would continue to lie. Ms. Eubanks said that, in the end, second hand smoke was a large part of their case. At the start of the case, however, the government felt the “science isn’t there” for second hand smoke. However, Ms. Eubanks, who eventually became the lead attorney, was committed to using second hand smoke data, so she deliberately wrote a letter with the filing, specifying that “smoking” includes all forms of smoking.
In response to the case, the tobacco industry used extensive lobbying efforts, including attempts to have the litigation’s budget cut. The industry tried to prevent the use of many of their own documents based on attorney-client privilege, despite the fact that the documents were readily available online. The industry used attorneys extensively to “cloak” information, with attorneys being present in research and “science” documents and discussions to allow for claiming attorney-client privilege. However, Ms. Eubanks pointed out, the law has a caveat that says these protected activities are no longer protected if the lawyer should have known that fraud was being committed. The justice department was able to use information they got from online copies to argue that the lawyers should have known and were a part of the process that constituted fraud, thus opening up these documents to the court.
She ended her talk by saying that existing regulations are still not being enforced, and with a call for regulatory bodies (such as the FDA) to use laws the that already exist to more effectively regulate tobacco.
Did The L.A. Times Single-handedly Defeat Prop 29?
Stan Glantz discussed his analysis of June 2012′s Prop 29, and the lessons it presents, especially for public health and the media. Prop 29 was a $1 tax increase that was very narrowly defeated by the tobacco industry. Dr. Glantz’s pre-talk conflict-of-interest disclosure included the fact that he was involved, late, in the attempt to pass Prop 29. Prop 29 originally was not begun by scientists or public health sponsors, but, instead, by Don Perata, who was, at the time, Senate Pro Tem. Dr. Glantz said that Mr. Perata originally wrote Prop 29 to benefit construction, “for reasons that were not clear.”
Health groups got involved after the Proposition movement began, and changed it so that 70% of the revenue would go to cancer prevention. The measure lost by only “4/10 of 1%.” Tobacco industry spent approx. $40 million dollars to defeat it. Of the money to defeat Prop 29, $1.1 million came from the Republican Party, but the vast majority of the money came from tobacco companies, predominantly from two major tobacco companies.
The “Yes” side spent approximately $12 million, most from the American Cancer Society. And the majority of that funding came in late. But, Dr. Glantz said, “There were many reason Prop 29 may have lost, but lack of money wasn’t one of them.” On the “Yes” side, the funds were distributed across 7 major groups. Dr. Glantz also said that this model is typical – that the bill is created and promoted to benefit an interest group, like construction, and then the health sector ends up having to pay for it. His advice is that if health groups are going to have to pay to get these bills passed, then “we should be driving the train.”
The “Yes” side framed the argument as a tax to cure cancer. The “No” campaign hammered on the fact that the proposition was “flawed” and that the state’s budget issues were too pressing to be distracted by trying to cure cancer. The most effective ad against Prop 29 featured Dr. Ladonna Porter. Dr. Ladonna Porter was pivotal. As Dr. Glantz said, she was “a very appealing spokes-doctor” and her three-part message was that there is no money for cancer treatment in Prop 29, that the money will be sent outside the state of California, and that it was opposed by several taxpayer groups.
Dr. Glantz points out that there was no rebuttal to this argument. At this point, Dr. Glantz became involved late in the campaign. He said he was very frustrated with their “soft-focus” message of curing cancer, and by the campaign’s lack of response to Dr. Porter – so much so that he said he was filmed for an ad where “they had to do 5000 takes just to get one where I was not smirking.”
Dr. Glantz pointed out Dr. Porter’s past history on his blog, specifically about her track-record of testifying against cleaning up the rocket-fuel contamination of a water supply. At that point, Dr. Porter was pushed off a state board and her ads were pulled but “it was too late.”
Dr. Glantz also said that the tobacco industry also tried to stay “invisible” by “hiding behind third parties,” which he noted is a frequent tactic of theirs. Quotes in the media were almost always attributed to taxpayer groups, or the Republican Party, despite the fact that the industry was massively bankrolling the opposition. Dr. Glantz also said that the campaign suffered from the L.A. Times not endorsing Prop 29. The lack of endorsement was “heavily advertised” by the No campaign, resulting in a decrease from a 14 point to a 5 point spread at the time of the ads. Given the narrow margin by which it was defeated, he feels that Prop 29 would have passed if the endorsement had occurred.
So, in the end, why did Prop 29 lose? Dr. Glantz said there were three reasons: 1) he felt strongly that a weak media campaign was a major issue; 2) the L.A. Times taking a no position was “incredibly important;” and 3) the media was “lazy” and let the industry hide in plain sight.
Additional lessons learned for Dr. Glantz are that health groups need to be pro-active. In addition, the public is much more likely to support legislation if it is seen as “doing something about tobacco,” rather than “taxing smokers in order to do something in general for the public.”
Is Tobacco The New Medical Marijuana?
Dr. Robert Proctor spoke about the case for tobacco abolition, a new and emerging approach to limiting tobacco’s public health consequences. Dr. Proctor emphasized that this approach is a ban on the sale of cigarettes, not the use. If you wanted to grow, and cure, your own tobacco, you could. He said that there are six justifications for taking an abolition approach to tobacco. His points were:
1) Tobacco is the deadliest object in the history of humanity, with 6 million people dying per year. It will be a great victory if we can keep the numbers under 300-400 million.
2) Tobacco is a defective product. He emphasized it is dangerous “by design.” Cigarettes are also addictive by design. The FDA could require that they be produced with nicotine at a sub-addictive level. Phillip-Morris has created the technology to make a sub-addictive level of cigarette.
3) Tobacco smokers rarely inhaled before the 19th century. Smoking tobacco only became possible in the 1830’s. Uncured tobacco is too acidic to be inhaled. Smoke was only inhalable after tobacco was cured, which allowed it to be less acidic and inhaled more deeply. The act of inhaling smoke, by itself, is damaging. A regulation that prohibited any smoke with a pH lower than 8 to be produced by tobacco could prevent smoking. Passing those two laws alone, per Dr. Proctor, would do more to save lives than any other tobacco control activity.
4) The tobacco industry is a powerful, corrupting force in society. The industry has been documented to sponsor fraudulent research, corrupt the media, and has corrupted the information environment, including for its own employees. From 1969: “Doubt is our product since it is the best means of competing with the ‘body of fact’ that exists in the mind of the general public. It is also the means of establishing a controversy.” Cigarette manufacturers have even managed to thwart the Navy’s attempts to go smoke free on ships until only about a year ago.
5) Tobacco is having negative and sometimes devastating effects on the environment. Tobacco companies have funded global change denialism research. Stopping the flue-curing tobacco alone is the equivalent of taking millions of cars off the road.
Dr. Proctor states that one of the biggest arguments in favor of abolition is that smokers do not like their habit. Most smokers will state that they do not like the fact that they smoke and wish they could quit. The number of people who enjoy smoking is very rare. This phenomenon is so well-known within the tobacco industry that the small subset of people who actually enjoy smoking are called, by the industry, “Enjoyers.” “Smoking is not like drinking, it’s rather like being an alcoholic,” is a quote from a tobacco executive provided by Dr. Proctor.
So would tobacco abolition result in organized crime involvement, or become another failed War On Drugs? Dr. Proctor said the industry has been promoting this argument. But he noted that, historically, laws to ban cigarettes have been allowed to stand, even when challenged – these laws were only rescinded by local communities in response to a desire for tobacco revenues, and because of persuasive arguments at the time from the tobacco industry. The arguments from the industry for repealing these laws then were that “if our product was harmful we would stop making it,” with these types of explicit quotes dating up to as recently as 1986. These statements from industry were based on industry-wide scripts that instructed spokesmen to “reassure the public.” These statements were often made in public and under oath.
Abolition is easier than banning menthol, or regulates filters. Currently universities can and do ban the sales of cigarettes. Dr. Proctor also pointed out that “one of the problems with health groups is that they don’t actually know how cigarettes are made.” He encouraged the audience to find out, to assist in how to approach issues of banning sales and using laws to help with tobacco control. For example, the German tobacco industry researched extensively the effect of pH on inhalation, from which much of the information about pH’s effects on smokers came.
At the current time, every community in America, per Dr. Proctor, still has the legal right to ban the sale of tobacco. Abolition is not a radical idea. As Dr. Proctor points out, “it would only help the industry to live up to its long-held promise.”
Zombie Tobacco-Industry Tricks
Cynthia Hallett of No Smoke spoke about the resurrection of some of the tobacco industries’ oldest tricks. Deja vu seems to be the norm for those who are working in tobacco control. She gave several examples:
1) Ventilation as a solution, especially in casinos. Ventilation, however, only deals with temperature and comfort, and does not mitigate the health effects. She noted that 19 states include casinos in their smoke-free work-place laws, but, in general, the states that do are not the “heavy-hitters” such as Atlantic City, where the laws say, for example, that 3/4 of the floor must be smoke-free. Local governments are getting push-back when they try to pass these laws, with industry saying that local governments don’t have the right to regulate these issues, only the state does. Local governments do have this right, but they are wary of getting into a battle with industry.
2) Lawsuits or legal threats. She noted that the industry has gotten aggressively involved in blocking both Graphic Warning Labels (FDA), and Corrective Statements (RICO remedy).
3) New products. She said that one of their pushes is promoting e-cigarettes in smoke-free environments. These products are not regulated by the FDA. Other tobacco products are also being pushed. Diversification is the new approach.
4) Attacks on successful tobacco programs, including claims of illegal lobbying, as well as attacks on successful measures. In response to this, the W.H.O. had a recent global No Tobacco day whose campaign focus was the topic of tobacco company intimidation.
Ms. Hallett noted that the policy implications of all these actions are that there are fewer than expected local laws happening. There have been no new state laws since 2009. These intimidation tactics lead to self-censorship, which leads to inaction or back-sliding. She also said that “viewing industry as stake-holders is very dangerous.” The example given was the FDA’s approach. Ms. Hallett asked, “how long are we going to allow these convicted racketeers to have a voting or even non-voting role in these issues?” She strongly cautioned against “working with” industry.
The good news is that about 49% of the U.S. population is protected by a workplace, restaurant or bar law. The bad news is that 19% is not at all. An approximate 30% of the population have a mix of protection. That 30% number has not changed in a number of years, despite the science to support an expansion to protect all workers.
New policy approaches include such emerging issues as pushing for smoke-free multi-housing units. Successes include 132 communities which have smoke-free beaches, 231 communities and 6 states/commonwealths have smoke-free parks. A total of 825 college campuses are smoke-free, and many also completely tobacco-free. She emphasized that the industry is losing “the battle of smoking acceptability,” but the push-back from industry may threaten all this progress.
Finally, Dr. Glantz talked about issues on a national level where, as he put it, at the FDA “the lawyers are running the science.” He states that laws are not being implemented, including banning menthol, or going to color-coded labeling of products. He states that health groups may need to sue, or get more involved because, as he noted, “the bad guys often win because the good guys didn’t show up.”
Will you show up? Check out the local tobacco issues in your area.
English: Aerial view of Kansas City, Kansas, looking southwest. The Kansas River (right-center) joins the Missouri River (left). A small piece of Kansas City, Missouri is visible on the left of the Missouri River. (Photo credit: Wikipedia)
More and more research shows that how long you live may be determined by where you live – down to the zip code level. The cumulative impact of years of exposure to factors such as violence, lack of walkable paths, food deserts and economic insecurity can reduce a person’s life-span by as much as 16 years compared to someone who lives only a zip code away. But whether you’re a concerned citizen, a journalist wanting to cover these issues, or a public health department, it’s hard to know how to change these factors. Taking action can feel overwhelming. Where do you start? How do you do it?
So it is no surprise that an audience-packed 2-hour session at the 2012 America Public Health Association (APHA) conference was on just that topic: how to take action to change deeply-rooted social determinants of health. Speakers from three different communities shared the solutions they had found and offered tips for “moving from measuring inequalities, to taking action.”
Tips from Toledo
Identify Your Target
The first speaker, Kate Sommerfeld, from United Way of Toledo, Ohio, talked about the specific steps that her community has taken to impact the social determinants of health. Their first step was to focus on what’s important to them locally. For Toledo, their primary target was high school graduation rates. Their graduation rates are only approximately 63% – with half that rate for African-American and Latino males. High school graduation rates, while not a “be-all or end-all,” are a hot button issue for that local community and are felt to be a key determinant for life-long health and economic security.
Frame The Discussion
The second key to their approach was working together – often the “make or break” part of the process. But for them, how an issue is framed is crucial. Their group uses an image of a kid coming to school dragging heavy bags of hunger, homelessness, and domestic violence. Their message is that addressing these issues together is a way of supporting schools. If you go into a school to try to implement a public health initiative, it’s important to speak the language of education. Their local community has a high level of food insecurity, which became a priority for service providers, who implemented a summer feeding program for kids. Another coordinated new program was dental care for kids, which was provided in the schools.
Go To The People Affected
Another of their lessons-learned is that of “looking outward.” In the past, their approach was to look at rankings on a variety of measures, then getting motivated by poor results to create interventions. Their new approach is to go to the communities at risk and ask community members what their goals and priorities are, and how they feel an issue can be best addressed.
Understand Your Partners
Constituent relationship management is another factor in success. What is the corporate social responsibility? Is it hunger? Is it early literacy? Once you can define a topic, they found they could bring partners in and support them through the process.
Doctors’ roles, Ms. Sommerfeld felt, are important to understand, especially physicians’ roles in early literacy and social-emotional development. Their group sent handy bullet-point reminders on issues that doctors can assess in a child’s visit, even in the zero-to-one age range, as well as a list for doctors to use as referral resources.
Unify Your Message
Ms. Sommerfeld’s tips for other groups included creating a common vision, finding a group to drive the coordination between partners, and providing evidence-based approaches to further goals. She emphasized that collective action and impact is much greater than each individual program alone.
Care in Kansas City
Embrace Bad News
The next speakers were Joe Reardon, Mayor of Kansas City, Kansas, and Joe Connor, their county director of public health, and Caitlin McMurty, an analyst with Mayor Reardon’s office. Mayor Reardon spoke first about their experiences mobilizing the public sector. Kansas City has a population of about 150,000 people and they recently combined into a unified government of city and county (Wyandotte County). One of their first combined initiatives years ago was to “grow the economy,” which Mr. Reardon felt they have successfully done. But, as Mr. Reardon pointed out, just as this engine of economic growth is occurring, his office got the bad news about their health rankings. How bad was it? They were “dead last” – 105 out of 105 counties in health measures. Typically, he noted, elected officials don’t like bad news and rankings. In general the advice is to “run away” because it is “too hard, and it will have to involve too many people.” Instead, Mr. Reardon said he made a choice to “embrace bad news” as a way of motivating change.
An Informed Politician Is An Effective Politician
Mr. Reardon said he was surprised that the numbers could be so bad because they have a large health IT industry, as well as a major medical center, the University of Kansas Medical Center. It was at this point that he learned about the social determinants of health. Joe Connor, director of public health, pointed out that one of the challenges they had to overcome initially was teaching the difference between health, and healthcare. The mayor said that he understood then “my agenda had to change.” He said that he felt that, instead of just growing jobs, he had to “lift up the community.”
Mr. Reardon found that their key steps were to get people to speak to each other, and to de-politicize the process. Mr. Reardon said that he was surprised to find that the community “got it,” that these were long-standing issues, and that they were aware that things needed to change. He said that immediate action became one of their most important priorities. They defined five strategic areas right out of the gate on which they wanted to take action. Their first success was to pass a complete streets ordinance.
Action Breeds Momentum
In response to this success, a foundation offered to pay for a complete assessment and the creation of a master-plan for trails and sidewalks. A local college went out and assessed every single sidewalk. He also gave an example of how, once a road in their most-neglected neighborhood was renovated with sidewalks, the local minister of a church right next to the road called his office to say that they would like to begin a walking program and would the mayor attend the kick-off? Mayor Reardon said that having the project as a collaboration meant that the community wanted to use it to improve health right away: “There is a momentum that is created.” Their next initiative was addressing access to fruit and vegetables. Their newest chain of groceries stores that opened in their urban corridor has been very successful, and actually sells more fruits and vegetables than in other neighborhoods.
People Can Agree On Health
Mr. Reardon said that one of the surprises to him was that when an issue is framed as a social determinant of health, the political battles that are often a part of tackling these issues “go away.” For example, local districts used to fight about sidewalks as soon as the topic was introduced. Framing an issue as a public health inequality can overcome political battles, especially when inequities are pointed out.
Even When You’re Moving Fast, Stay On Message
Joe Connor, director of public health, then talked about how their whole process was “very organic. We just jumped off a cliff.” In their community, the health department “needed to be the convener.” But he also emphasized that they needed to move beyond assessment. “We’ve been assessed to death.” Their pivotal report made a difference because “it put it all in one place,” and was statistically valid. He added that their message needed to be consistent, including emphasizing that major health centers and the closing or opening of hospitals does not change the overall underlying health of the community. Policy development was key. His approach was to look for “opportunities that make a difference.” He noted that their community had gone through a 10-month planning process, and so, when an influx of money appeared from their casinos, they were able to direct the funds effectively and rapidly.
Take Public Health Skills To Other Areas
Caitlin McMurty, an analyst with the mayor’s office, shared an experience about useful ways to intervene. One day, by chance, she went by a county commissioners’ meeting, and found that the topic of discussion was community gardens. But instead of discussing the health benefits of these gardens, the commissioners’ discussion centered around noises, smells, and the increased costs associated with buying back land from investors. She spoke up to the developers and business members present at this meeting and asked about where health was in this discussion. She shared with the meeting their area’s own food desert statistics, and then volunteered to work with the committee. She emphasized that the type of research she did around this issue “is what we do best.” She said that when participants are willing to spearhead a community process, and write a white paper, it can change the nature and outcome of a discussion.
Affecting Change in Alameda
Make The Link To Health
The last speaker, Alexandra Desautels, was from the Alameda County Department of Health. Alameda County ranks in the middle of the road in terms of health rankings. However, when they look at the sub-county level, the differences between a child of the same race and age from the Oakland Hills, compared to a child from West Oakland, show a 15 year gap in life expectancy. Their goal is to obliterate these differences. She spoke about policy creation around health equity and noted that sometimes an official will ask, “Excuse me, can you tell me why the health department is involved in this?” She said her reply is that their goal is to work so that “everyone in their county can be healthy, not just some people.” In their work, they have shown that people going through foreclosure miss more medical appointments and make other trade-off with their health. Economic inequalities are also tied to neighborhood level issues.
Multi-Task Your Approach
Ms. Desautels said they think about their efforts as working in “both the portrait and the landscape modes.” They work with people one-on-one, and they also work with the larger community in mind.
For example, one-on-one, they are coordinating with a local agency to teach consumers how to read and understand some of the obscure marketing around the more predatory banking practices.
On a larger scale, their director wrote an Op-Ed article about how the banking issue is a health issue. Their department also affects larger changes by policy, for which she gave several examples.
One of their newer initiatives is the Prosperity Project. The department learned that 41% of county residents do not have access to banking services and, those who don’t are 2-3 times more likely to go without food or medicines. Payday loans are highly concentrated in poorer neighborhoods. Because of these issues, her group is working on a responsible banking policy. Community Reinvestment Acts (CRAs) require banks to reinvest in the community, but the data on how and where this occurs is quite difficult, if not impossible, to penetrate. Her group is pushing to pass an ordinance for the data to be shared at the census tract level. They want to be able to see where the investment occurs. Then they want to partner with the bank to see that the money is being invested in the areas that need it most, and to have a say in how to get maximum benefits to the community, such as more money into reserve funding for products like lower-cost payday loans.
Look Within For Impact
In other examples, Ms. Desautels said they discovered that their own Alameda truancy policies required families to go to court, and that many of the truancy cases involve children missing school because of issues around managing chronic diseases. They are linking case managers to these cases and are working with the code enforcement department to try to shift toward a more preventive approach. They have also identified point people within other departments to work with them on health-related topics, such as an identified trained code-enforcement agent to be on call for problems when a child with asthma is living in mold-infested housing. Finally, they are working with the regional transportation authority on the health impact of raising bus fares.
She also emphasized that they feel it is important to recognize and address emerging issues as they occur. They field requests from community groups and other government agencies. They provide a health equity impact tool to help interested groups assess questions around health equity impacts.
Tackling the social determinants of health can be tough. But as Ms. Desaultner said in her closing remarks, “If it wasn’t controversial, it wouldn’t be important.” These three very different communities’ experiences show some striking commonalities around communication, policy, and strong, multi-faceted approaches. And they demonstrate the dramatic success that can occur when using social determinants of health in a holistic approach.
Is Your Bank Balance Making You Sick?
The ‘Unmentionables’ panel at Health 2.0 was a fascinating one with some great new perspectives. What are the unmentionables in healthcare and technology? Alex Drane, president of Eliza, believes that the real unmentionables in health are the real life factors that prevent us from being able to live the healthy life we know we should live. These factors include debt, caregiver stress, and other big events that knock people off track. Eliza created an “ostrich index” to estimate how much these factors are being ignored around having an impact on a person’s health. As a result they found that there was a significant negative impact on people’s health. They also discovered that positive (“buffers”) and negative (“magnifiers”) coping abilities also have a profound impact.
Another finding was that shifting the balance of positive to negative in terms of coping also has profound impacts on health. Ms. Drane said they have begun to define financial stress, relationship stress, and caregiving, as chronic diseases. Using these three domains they created a vulnerability index. In building the index they found that 34% of the variance in self-reported health scores is accounted for by the difference in these three criteria. There was also a doubling of the rates of non-adherence in patients who are vulnerable — both people who forgot to take their meds, and those who chose to not take their meds.
Lacy Hart, is a program manager at the Mayo Clinic for diabetes care. She spoke about the challenges of caring for patients with numerous life stressors. She defined a “data gap” between measurements such as blood glucose values and the the real issues and stressors that are preventing a patient from being able to take care of themselves. They created an online questionnaire that captures information such as whether or not the patient is worrying about money, whether he is feeling overwhelmed, and other areas. Their site also includes localized resources to help patients with problems like financial stress. The tools and information they developed can be found at www.semnbeacon.org. It is open-source and can be freely used.
Wendy Lynch, Co-director of the Center for Consumer Choice in Health Care, spoke about how social support has long been recognized as a potent factor in each person’s health. Social support profoundly affects both the mortality of a population and an individual, as well as the specific diseases a person might get. She claims that research shows that, currently, 90% of free time is consumed by watching TV. So how can this gap be addressed? She gave one example. In their initiative to increase social support among knee and hip replacement patients, users are rated not just on how much they have used their application, but also based on other criteria such as how much advice users give each other, and how much they support other members. Once this system was implemented, users began to connect much more.
In terms of caregiving, Terry Clark from UnitedHealthcare Medicare and Retirement, spoke on the ways in which UnitedHealthcare has changed their approach. He cited the number that 65.7 million people have served as unpaid family caregivers to an adult or child. (source: Caregiving in the U.S. National Alliance for Caregiving in collaboration with AARP and MetLife, 2009). However, using their own data from “Caregivers in Decline” 2006, he said that most caregivers suffer diminished health while caregiving. Their organization has defined five health stages. Normal, steady-state, managing health events, eventual decline. They list caregiving as a separate state that can co-occur with any of these stages. In attempting to address this issue, they identified tools to help caregivers by three approaches – simplify, personalize, and care. 77 million boomers are aging and 28% of people at any point in time are caregiving.
Faheem Ahmed, from SAP, spoke about the “accidental caregiver.” He talked about how caregiving for many people occurs as a dramatic moment of change. Perhaps your child is diagnosed with autism, or a spouse has a car accident, or a parent is diagnosed with dementia. To address this issue, they created Care Circles. Care Circles has curated channels of resources for caregivers, allowing them to compose care plans on the fly. People have to be invited to participate in any one person’s care circle. When a person logs in, you can see your care circles, which can be for multiple people. In the care circle, other people on the team can see and read the things that have been added to a care plan, such as information about a new drug. There are also journal options, including trackers for reporting behaviors like tantrums. They are starting Care Circles first for families with children with special needs, but will be rolled out into other communities soon.
Ms. Drane then talked about how caregiving is one of the easiest, most palatable of these ‘unmentionable’ topics for our society to start addressing these factors that impact people’s ability to live the healthy life they need. Sex is much less likely to be an easy topic.
Sex – the big unmentionable
Deb Levine, from ISIS, spoke about Circle of 6, and app to help prevent acquaintance rape, sexual assault and sexual violence. The circle of 6 mobile app won the DHHS challenge of “Apps against abuse.” The app asks you to select six people from your contact list. It then asks you to designate these contacts for different tasks. For young women in early stages of abusive relationships often don’t know who to turn to, or how to reach out. They are often being separated from their peers and isolated. The app gives users ways to reach out to their friends about the topic. Another example is for a young woman on a blind date that is getting scary. If she just taps the app, one of her friends is contacted to call and pretend they have an arranged meeting now. There are also emergency contact options. Over 23,000 copies of the app have already been downloaded.
Jessica Ladd of Sexual Health Innovations spoke about her website, So They Can Know. The website allows users to find ways to share with a sexual partner a new sexual disease diagnosis. It walks users through scenarios, possible ways to inform a partner, and if none of that seems do-able, or even sounds dangerous, it even includes a way to send an anonymous email message to any and all partners. The site also provides information about follow-up care, symptoms to watch out for, and what other infections a user might have. Her company is a non-profit and the site was built entirely with volunteers for a cost of less than $5,000.
Anna Gyarmati of KamaszPanasz shared their site in Hungary, which answers questions about sexual health. Users can read general information, or ask questions. All of their articles are overseen by a physician to “make sure we are presenting medically accurate information.” The site also has a sexual dictionary to allow users to look up words and phrases, including slang. There are ways for users to post their stories, participate in forums, or even write sexual blogs.
English: Poem in the gardens outside St Mary’s Church, Gowran, Co. Kilkenny. William Henry Davies’s poem ‘Leisure’ has been inscribed on a slab. It starts “What is this life if, full of care / We have no time to stand and stare?” (No. 928 in the Oxford Book of English Verse) The church is in the background. (Photo credit: Wikipedia)
Ms. Drane then shifted topics to a third unmentionable, user choices around end-of-life care. She spoke about how she felt the “death panel” fiasco set the movement of honoring patients rights back significantly. She feels that the tide may be turning, however. Jeff Zucker, of My Directives (a mobile and digital advanced directive care plan) said that entering a person’s advance directives wishes usually takes, on average, six minutes. Users are asked to click on a checklist of options of “what’s important to me,” as well as the more usual questions around resuscitation wishes. People are allowed to change their selections at any time. The site also asks users to list their likes and joys, as well as their dislikes and fears, so that their caregivers, family and friends will know in case they can no longer speak for themselves. The site uses audio, video, and checklists. Once the information is entered, a legal document is generated. The site also gives users tips for how to share this information with family and friends. They are blue-button and HIPPA-compliant.
Alan Pitt of EmergeMD talked about his own personal story. He is a physician, like his father, and he shared that he thinks that the symbolic “black bag” of the physician can no longer possibly hold all that we need to do in healthcare. His mother became quadriplegic after an accident, and he is now in the role of caregiver from a distance, watching his mother receive fragmented care. He spoke about hospice as a different approach than people usually expect. He believes it is a service to help people “live, aware of their mortality.” He created a hospice care application that allows care cycles to be shared between providers who are all caring for a patient. His site allows users to have video-calls with friends, patients, and other providers.
Alex Drane then spoke about Care With Grace, which was created in honor of her sister who died of malignant glioblastoma. She talked honestly about the difficulty in having the conversation about quality of life with someone you care about, even when the outlook is grim and the care team is excellent. She encouraged everyone in the audience to go online and fill out an Advanced Directive. She feels that when the people you love are acting as caregivers, those same people are often not in a good place to make these decisions for us. She ended with her belief about healthcare, that we should “Cure sometimes. Relieve often. Comfort always.” Ambroise Pare’, 1510-1590.
San Francisco Competition
Meet the organizers of the Code-a-thon, Jessica Goldband and Jean Luc Neptune.
The San Francisco teams only had 2 days to create a solution and 3 minutes to present. It was a high-stakes, high-pressure event. If known the challenges it was entered for are in parentheses. AT&T, Aetna, Healthline Food Essentials [...]