Tuesday, November 22, 2011

Occupy with Grace

This year I'm pleased to participate in the Engage with Grace blog rally. This post was written by Alexandra Drane and the Engage With Grace team. The goal of blog rally is to get people talking about end of life issues with family members while they are still healthy, when it is easier to think through these issues more rationally and carefully.  

"Once again, this Thanksgiving we are grateful to all the people who keep this mission alive day after day:  to ensure that each and every one of us understands, communicates, and has honored their end of life wishes.  

Seems almost more fitting than usual this year – the year of making change happen.  2011 gave us the Arab Spring – people on the ground using social media to organize a real political revolution. And now – love it or hate it – it’s the Occupy Wall Street movement that’s got people talking.  
Smart people (like our good friend Susannah Fox have made the point that unlike those political and economic movements, our mission isn’t an issue we need  to raise our fists about…it’s an issue we have the luxury of being able to hold hands about.   
It’s a mission that’s driven by all the personal stories we’ve heard of people who’ve seen their loved ones suffer unnecessarily at the end of their lives. 
It’s driven by that ripping-off-the-band-aid feeling of relief you get when you’ve finally broached the subject of end of life wishes with your family, free from the burden of just not knowing what they’d want for themselves, and knowing you could advocate for these wishes if your loved one weren’t able to speak up for themselves. 
And it’s driven by knowing that this is a conversation that needs to happen early, and often.  One of the greatest gifts you can give the ones you love is making sure you’re all on the same page.  In the words of the amazing Atul Gawande – you only die once!  Die the way you want. Make sure your loved ones get that same gift.   And there is a way to engage in this topic with grace…
Here are the five questions – read them, consider them, answer them (you can securely save your answers the Engage with Grace site, www.engagewithgrace.org), share your answers with your loved ones. It doesn’t matter what your answers are, it just matters that you know them for yourself, and for your loved ones.  And they for you.    

We all know the power of a group that decides to assemble. In fact, we recently spent an amazing couple days with the members of the Coalition to Transform Advanced Care  -- or C-TAC – working together to channel so much of the extraordinary work that organizations are already doing to improve the quality of care for  our country’s sickest and most vulnerable.
Noted journalist Eleanor Clift gave an amazing talk – finding a way to weave humor and joy into her telling of the story she shared in this Health Affairs article.  She elegantly sums up (as only she can) the reason that we have this blog rally ever y year:   
For too many physicians, that conversation is hard to have, and families, too, are reluctant to initiate a discussion about what Mom or Dad might want until they’re in a crisis, which isn’t the best time to make these kinds of decisions. Ideally, that conversation should begin at the kitchen table with family members, rather than in a doctor’s office.”
It’s a conversation you need to have wherever and whenever you can – and the more people you can rope into it, the better!!   Make this conversation a part of your Thanksgiving weekend – there will be a right moment – you just might not realize how right it was until you begin the conversation. 
This is a time to be inspired, informed…to tackle our challenges in real, substantive, and scalable ways. Participating in this blog rally is just one small – yet huge – way that we can each keep that fire burning in our bellies, long after the turkey dinner is gone.
Wishing you and yours a happy and healthy holiday season.  Let’s Engage with Grace together." 
To learn more please go to www.engagewithgrace.org.

Monday, November 14, 2011

Maps 2.0: Interacting with Our Health Care World

Maps do more than characterize our physical world, they also help us visualize information contained within it.   Thematic mapping has been applied to many types of information, including health data.  One of the earliest and best known examples of health data mapping was done by Dr. John Snow in 1854.  Snow was able to identify the source of a deadly cholera outbreak by marking the location of victims on a London street map. (1)
Health maps enter the 2.0 era
Maps today are more than static depictions of information.  The integration of cartography with information technology has resulted in the creation of maps which are dynamic and interactive, allowing users to manipulate, analyze and manage geographically referenced data.  These advanced mapping systems are known as geographic information systems (GIS).
In health care, GIS-based maps are being used to better understand a variety of issues including:
  • Tracking the outbreak and distribution of disease
  • Characterizing environmental factors that can impact health
  • Visualizing the distribution and availability of health care resources

Visualizing problems, finding solutions

With over one million visits a year, HealthMap is one of the best known and most widely used health maps.  Created in 2006, HealthMap is produced by a team of researchers, epidemiologists and software developers at Children's Hospital Boston.   HealthMap collects information about disease outbreaks from various online sources including news aggregators, eyewitness reports, online discussions and public health reports.  The goal is to produce a comprehensive, real time map that allows early detection of global public health threats.   According to its website, HealthMap identified and tracked H1N1 cases well in advance of traditional reporting methods in the spring of 2009.  Currently HealthMap is tracking an average of 1000 events per day.

In May 2011, the Economic Research Service (ERS), a branch of the US Department of Agriculture (USDA), introduced the Food Desert Locator.  This interactive tool is designed to help policy makers and other public health professionals identify the location of food deserts so that they can effectively focus their efforts on expanding access to healthy foods. The ERS also produces the Food Environment Atlas, a mapping tool introduced in 2010, which provides geographic depictions of data on food choices, indicators of health and well being and community characteristics. 

The newly created Mobile Health Map depicts the 2000+ mobile health clinics operating across the US.  The goal of the project is to build support for such services by  demonstrating their cost-effectiveness in providing health services.   This map is being used as a data collection tool.  Mobile clinics are encouraged to enter information about their services and costs. 

More recently, social media has been incorporated into health mapping.  In October, 2011, Marcel Salathe, an assistant professor of biology at Penn State University, found evidence that sentiments about H1N1 vaccination among Twitter users were positively correlated with vaccination rates by geographic area.  Salathe concluded that negative sentiments may lead to geographic clusters of unprotected individuals, increasing the likelihood of disease outbreaks.  This information could potentially be used by public health officials to intensify educational campaigns in at risk geographic areas.  
Finally, health maps aren't just for public health professionals.  A new mapping service called Walk Score helps apartment hunters identify walkable neighborhoods as a means to promote better health.  
There’s an app for that
Using GIS enabled mapping doesn’t require a major investment in information technology.  Vertices  has developed a proprietary application called Mappler.com which enables community organizations to create interactive maps without specialized knowledge of GIS.  Examples of health related maps can be found on their website.
What health data would you like to see mapped?  

(1) Aschengrau, Ann and George R Seage III. Essentials of Epidemiology in Public Health. Sudbury: Jones and Bartlett, 2008.

Thursday, November 3, 2011

Is an Ounce of Prevention Worth a Pound of Cure?

True or false:   
Earlier disease diagnosis leads to more effective treatment and better outcomes.  
Most of us wouldn’t hesitate in responding true and yet maybe we should.  Early diagnosis can carry risks as well as benefits.   During the Bicknell Lectureship in Public Health at the BU School of Public Health, Dr. H.Gilbert Welch, a professor of medicine, practicing clinician and director of the Center for Medicine and Media at the Dartmouth Institute for Health Policy and Clinical Practice, was joined by a panel of health care professionals to discuss whether we need to reevaluate the value of diagnostic screening.
How early is too early?  
Today, Dr. Welch noted, patients are often diagnosed long before they become symptomatic.  Fueled by improvements in test sensitivity and the availability of new therapies, the diagnostic threshold for many diseases has been lowered, increasing the number of people who are classified as needing treatment. The problem with early diagnosis is that there may be a significant number of these “patients” who may not actually develop health problems. For this group significant harm can result from unnecessary treatment.  These patients, according to Dr. Welch, are overdiagnosed.  
The popularity paradox  
Many of us can probably point to a friend or family member whose life has been saved by early diagnosis and intervention. However, survivor stories, focusing only on benefits, can lead to a popularity paradox, making screening appear more valuable according to Dr. Welch.  He pointed out that it’s also important to look at screening value from a global perspective. Epidemiologists have suggested that even if a screening test correctly identifies people with preclinical disease, its effectiveness is measured by its ability to reduce disease related morbidity and mortality. (1) Yet, according to data presented by Dr. Welch, the increased incidence of many diseases, such as thyroid cancer, has been associated with stable death rates. We may be suffering from a diagnosis epidemic not a disease related one. 
In October 2011 the US Preventive Services Task Force (USPSTF) proposed new  recommendations on PSA screening,  advising against its use in healthy men.   Prostate cancer screening is often cited as a prime example of the problems associated with overdiagnosis.  Writing in the New England Journal of Medicine, Richard Ablin, developer of the prostate specific antigen test (PSA), noted that several studies have found prostate screening did not reduce the death rate in men over the long term.  Ablin urged the medical community to rethink the use of PSA screening to “rescue millions of men from unnecessary, debilitating treatments.”  Putting this in perspective, Dr. Welch presented data on prostate cancer that found for every life due to screening, 30 to 100 patients are overdiagnosed.   
It’s about better care, not denying care
Dr. Kenneth Lin, a practicing clinician, Assistant Professor of Clinical Family Medicine at Georgetown University School of Medicine and former medical officer for the USPSTF, echoed Dr. Welch. He emphasized that individual patients and emotional experience cannot be discounted in formulating screening recommendations; however, this must be countered with evidence that people can experience harm from overdiagnosis.  It’s about striking a balance, he said, between science and emotion.  
Dr. Deborah Bowen, Chair of the Department of Community Health Sciences at the Boston University School of Public Health, spoke about genetic screening tests.  She observed that patients may have difficulty understanding what genetic test results, such “at risk”, mean.   She cited numerous studies which have shown that patient misunderstanding can lead to anxiety, decreased quality of life, false assurance and poor choices.   In these cases, she concluded, screening can create more harm than good.  
Dr. John Fallon, Senior Vice President and Chief Physician Executive at Blue Cross Blue Shield of Massachusetts, explained that employers want to be fair in determining what screening tests to cover but they also want to see evidence that screening has value.   Furthermore, he emphasized that we need to have the courage to change course when scientific data suggests clinical practices are not helpful. 
Time to shift priorities?
Dr. Welch and the panelists agreed that more thoughtful consideration of the risks and benefits of screening is essential to providing better care for individual patients.  As Dr. Welch noted, it’s important to tell both sides of the story. He added that we may also need to rethink our health care priorities, focusing more on health promotion versus early diagnosis. Early diagnosis focuses on looking more closely for health problems, while health promotion focuses on good preventive maintenance:  eating healthier foods, exercising regularly, using alcohol in moderation and smoking cessation. 

In other words, "is an ounce of health promotion worth a pound of cure?"
You can read more about overdiagnosis in Dr. Welch's book, Overdiagnosed: Making People Sick in the Pursuit of Health.  Profits from the book are donated to charity. 
(1) Aschengrau, Ann and George R Seage III. Essentials of Epidemiology in Public Health. Sudbury: Jones and Bartlett, 2008.