Carol Schechter

The following is a guest post by Carol Schechter, a leader in the field of health communication and social marketing. You can follow Carol on twitter @carol_schechter.

Last week was a bad week for the Susan G. Komen Foundation. On Monday, they were still an iconic charity; the group that successfully put women’s health issues in the public eye and the group that forever changed our associations with the color pink from babies to breast cancer survivors.

On Tuesday, their world changed. On January 31, AP broke the story that Komen decided  to stop funding Planned Parenthood, allegedly because Planned Parenthood was under Congressional investigation.   Social networks erupted with the news, and the world started to learn a lot about the workings of the Foundation: that the Komen VP behind the defunding decision was  tea party Republican who had long been opposed to Planned Parenthood; that Komen also opposed stem cell research; that a significant amount of Komen funds went to law suits against other charities that dared to use the phrase “for the cure” in their campaigns; that the decision to defund Planned Parenthood wasn’t shared with Komen grass roots chapters until after the announcement; and that many of these chapters opposed the decision when they learned of it. Komen started back pedaling quickly, first stating the real reason for the decision was not the Congressional investigation, but was because Planned Parenthood didn’t offer mammograms as a direct service. Excuses kept coming, but the damage was done. By the end of the week Komen reversed its decision and said Planned Parenthood was once again eligible to apply for grants. Then they engaged their PR firm.

This is not a PR issue, however. I respect good PR, but PR can’t fix a flawed organization.  Komen is a huge corporation. Since 1982, they have spent more than 1.9 billion dollars on breast cancer research.  An organization of this size needs leadership, vision, values and good management. 

My message to Komen- please go back to basics. Who is in charge? What do you stand for? What is your mission and what are your values?  You have done so much good for women – please don’t insult us by hiding behind PR.  You can gain back the respect you once had, but only by honesty, self reflection and hard work. Women’s health needs a trusted organization. Please give breast cancer survivors the organization they deserve.

Here’s the short story: counties with a greater concentration of “small,” locally-owned businesses (four or fewer employees) had lower rates of mortality, obesity and diabetes than counties with a greater concentration of large companies (manufacturers with more than 500 employees or retailers with more than 100 employees).

But hey! Businesses with four or fewer employees are not just “small,” they’re “micro” and wow (!) the greater the proportion of micro businesses, the healthier the population! Who knew!?

Talk about shifting paradigms!

Remember when we thought that “bigger was better”? Large employers were courted by state and local governments because they offered opportunities for advancement, higher pay and benefits like pensions and health insurance?

During that era, smaller and “micro” businesses were snubbed and in some cases, nearly driven out of existence, unable to bear the cost of dealing with local bureaucracies and burdensome regulations. And who cared if Main Streets became ghost towns anyway? There was a big box, chain or on-line retailer to fill any gap.

Well, we were wrong. We all should have cared.

It turns out that big companies led to a dark side we missed: it took “can do” attitudes away from the locals and left problem solving to someone else – far away. It created unhealthy dependencies on someone else to “save the day.” When small businesses dominate, however, locals design solutions because they have neighbors and community life at stake. At least that’s what some sociologists believe.

Small – and for certain, “micro” – business salaries and health benefits were never as lucrative as those in larger companies, so sociologists predicted poorer health might result. That’s not what they found.

According to the researchers, small business owners, feeling kinship with their communities, are more likely to support bond issues for local health capacity development, push local anti-smoking campaigns, promote community health programs and support farmer’s markets.  That sounds like disease prevention and health promotion to me.

If the health of counties is so influenced by small and “micro” businesses, how do we keep those businesses up and running and encourage more start-ups?

Those of us in health policy are likely too narrowly focused on affordable care and insurance. It might well be that reducing regulatory burdens required to start and operate a small business are equally important.

In my town, for example, it can take twelve weeks to get the OK to place a business sign. Businesses must pay two years of taxes in advance even before they make their first sale. It’s hard to get information on what licenses and inspections are required and that information is often contradictory. Tax calculations are far more complex than those of state or federal governments and there is no easy source of information about changes in laws or regulations, making business owners vulnerable to running afoul with government agencies, departments, inspectors and politics.

These are not issues we often contemplate in health policy.  Maybe we should start.

The Heart Truth®—a national awareness campaign for women about heart disease.

Organized by the Foundation for the National Institutes of Health (FNIH) as part of The Heart Truth’s American Heart Month festivities, “Friday, February 3rd is National Wear Red Day®, on which Americans wear red to show their support for women’s heart health.”

National Wear Red Day® is only the beginning, though. One of The Heart Truth’s signature events, The Red Dress Collection Fashion Show is also held during American Heart Month, as a kick-off to New York Fashion Week. This year’s show is being held Wednesday, February 8th. You can learn more and see highlights from last year’s Red Dress Collection Fashion Show here.

American Heart Month, National Wear Red Day®, The Red Dress Collection Fashion Show and all of The Heart Truth’s other initiatives, events and activities serve to further one objective — increasing awareness about heart disease among women and helping women take steps to reduce their own personal risk of developing heart disease. To learn more about the organization and its mission or find out how you can get involved, check out The Heart Truth’s website, Facebook page and Twitter profile.

The Disruptive Women in Health Care blog continually aims to encourage discussion and debate among readers about emerging issues and topics in the health care world. Historically, one of the ways that we have done that is through our weekly round-ups – that is, posts containing summaries and links to some of the big stories in health care news for the given week, with some original commentary and content sprinkled in as well. The way we see it, there is just too much happening in this burgeoning industry; it’s hard to keep up, especially when you’re busy disrupting and making headlines in the health care world yourselves. We know the weekly round-ups have been on hiatus for a while, but are happy to report that they’re finally making a comeback. Each week, we’ll be gathering some of the biggest health care news you can use from at home and abroad for posting on Wednesdays. Feel free to comment on what’s included and send us some links to articles to be considered for next week!

Has your week been too disruptive for you to keep up with the news?  Disruptive Women are on the case!  Here is this week’s round up of some of the most pressing issues here in America and around the world.

Here at Home:

Thanks to a provision of the Affordable Care Act (ACA), women are now able to receive free birth control, but only if it’s prescribed.  The New York Times explains how Catholic Colleges are using this loophole to combat contraception.

And, speaking of the Catholic Church and the ACA, USA Today says that Obama’s decision on Friday not to expand the conscience exemption to include religious institutions has been met with outrage from Church leaders and parishioners.

Remember that moment of panic you had when the swine flu epidemic came to the United States?  CBS News reports that swine flu numbers are rising again in Mexico. Will the US be next?

Susan G. Komen for the Cure, the nation’s leading breast cancer charity, announced Tuesday that it is halting its partnership with Planned Parenthood (per NPR) – a controversial decision that ignited a backlash from some of its supporters.

Here’s one perspective on Komen’s decision. What do you think? Will this impact your decision in giving donating to Komen, or another breast cancer non-profit in the future?

Sick? Took a sick day?  Is that enough of a reason for you to wind up unemployed?  HuffPo explains how an issue as simple as recovery from the flu has reached the Supreme Court.

With nearly two million women lacking health insurance and a quarter of a million unplanned pregnancies per year, Florida has a lot of challenges in terms of women’s healthcare.  Here’s what the state is doing to try and move ahead.

Around the World:

Brazil is calling for a registration of all pregnant women.  What does this mean for a woman’s right to choose within Brazil?

Japan’s population is shrinking. As more women choose a career over family, Japan faces declining birth rates. Could the United States be next?  ABC News takes a look.

Check back each week for the latest health care news!

There is, however, one area we don’t touch (in fact, we avoid it at all costs): partisan support for a candidate. While certainly all of our individual bloggers have opinions and perspectives, points of view and inherent biases, we will never run posts that are blatantly promoting one candidate for elected office over another.

I say this as a caveat to this post, the purpose of which is to announce a new series we’ll be running this year on the Disruptive Women in Health Care blog in which we explore the presidential candidates’ positions on health care and health policy, where they stand on particular aspect or aspects, what they envision to be an ideal health care system for this country and what role they envision the federal government playing in it.

This series is about more than just the Sustainable Growth Rate (SGR), the Affordable Care Act (ACA) or Medicare and Medicaid; it is about delving into each candidate’s philosophies, beliefs and stances towards health care and health policy, and trying to determine what specific policies and reforms each might undertake.

Image courtesy of the Mobile Press-Register.

The editorial team and I are very excited to be launching this series, as we feel it will provide us the opportunity to address important issues during a significant year from a much different perspective and in much greater detail than the mainstream media is likely to discuss.

You can expect to see a lot of substantive political and policy analysis being put forth via the series in the coming weeks and months, but like I said earlier — one thing you definitely won’t see is bias towards one particular candidate (though our posts will certainly contain links to articles from other outlets that may or may not be biased, because we feel it is important to provide a survey of what others are saying on the topic). Help us make the series even better by letting us know what topics or specific policy areas you would like to see explored – we’ll do our best to incorporate your feedback into upcoming installments.

We’ll be back with our first full installment of the series in the next few weeks, but in the meantime, we’ve rounded up some related articles we think are worth reading:

• CNN takes a look at claims of Medicare fraud being made against Mitt Romney by a pro-Newt Gingrich super PAC
• NPR explores “Romney’s unlikely and persuasive defense of the ‘Individual Mandate’”
• WaPo discusses Rick Santorum’s position on abortion in the context of his personal experiences

CMS Administrator Marilyn Tavenner addressing Care Innovations Summit attendees. Image courtesy of Kaiser Health News.

“I think we would all agree that these are not ordinary times, that this is not an ordinary conference, nor is it an ordinary time in health care,” commented Centers for Medicare & Medicaid Services (CMS) Administrator Marilyn Tavenner, in her address at the first ever Care Innovations Summit Thursday. In saying so, Tavenner captured not only the essence of the problems facing our nation’s health care system and the reason that over a thousand national thought leaders, senior government officials and industry experts had gathered, but also inspiring attendees with the idea that, by being there, they had the opportunity to be a part of the solution.

Driving the day at the Care Innovations Summit, which was hosted by the Center for Medicare and Medicaid Innovation (CMMI), Health Affairs and the West Wireless Health Institute, was the notion that American innovation could solve any problem, and the thousand-plus attendees were the innovators to solve this one. Emphasizing CMMI’s founding mission of better health, better care and lower costs, speakers across sectors, industries and areas of expertise continued to echo each other’s cries that it was all possible, if people began collaborating and innovating across fields.

Even before HHS Chief Technology Officer Todd Park compared data to rocket fuel, the Summit was beginning to sound like President Kennedy’s speech to Congress announcing the Space Race. In fact, the addresses and panels were broken up by “Ignite Talks” — wherein private-sector stakeholders presented problems and issued challenges to attendees and to entrepreneurs across the country, offering not only prizes, but implementation funding for the best solutions (you can see a list with links to descriptions of the various challenges issued here).

Park best captured the sentiment of the Summit, saying, “There is no problem that Americans can’t invent themselves out of…Transformation driven by a tide of grassroots innovation mojo has already begun.”

While this sentiment and attitude towards repairing and revitalizing our nation’s health care system certainly drove the day, it is not new, nor is it exclusive to CMMI. In fact, it echoes many of the themes that motivated us to launch the Health in Place™ (HIP) initiative last month. The concept of HIP is built around the idea that, thanks to wireless communications and emerging technologies, our homes are more than ju

st houses, our offices are more than just workplaces, our schools are more than just places of learning and our cars are more than just modes of transportation — and that, for this facet of 21st century health care to achieve its full potential, a number of public policy issues are involved, cutting across multiple disciplines from health care regulations and benefit structures to tax policy and technology incentives. HIP aims to connect the dots between industries, inspire innovation and drive policy changes that accomplish CMMI’s goals of better health, better care and lower costs while simplifying things in the process.

With all of this collaboration and innovative thinking, there is no doubt that this is an exciting time in health care, but as Don Casey expressed in his closing remarks at the Summit, there are some significant obstacles to overcome to get the rockets to the moon. “I think a lot of people are skeptical about two things,” Casey said, “the American economy and do we have the ingenuity to get this stuff done, and can we actually engineer a jailbreak for health care.”

Are you planning to take part in any of the innovation challenges issued? Do you think cross-industry collaboration is really possible? And, what do you think we need to do in order to break down the barriers Casey and others at the Summit alluded to?

The following is a guest post by Wendy Lynch, PhD the Director of the Altarum Center for Consumer Choice in Health Care. It was originally posted on the Altarum Institute’s Health Policy Forum.

By Wendy Lynch. There is a massive untapped resource in health care: consumers. Like a sleeping giant, unaware of its size and power, consumers have yet to realize what effect they could have on the system simply by asking questions or making choices. It’s not certain when, or if, consumers will awaken.

Consider this finding from our recent online survey of consumer opinions (1). The survey asked a national sample of about 3,000 employed individuals about where they get health information and how they use it. Only half of all respondents ever remember a doctor offering them multiple treatment options from which they could choose. Let’s remember the evidence: individuals who participate in medical decisions have better outcomes, better recovery, lower costs and higher satisfaction than those who don’t (2). Against this backdrop combined with national agencies promoting shared decision making with their “Questions are the Answer” campaign (3), and the new Physician Ethics Manual (4) insisting that the patient should be the primary decision maker about options, this answer is disturbing. But not surprising.

The subtle distinction is this: consumers remain recipients of care rather than participants in care. Sitting in an examination room, waiting for a doctor, possibly half-naked, not feeling well, patients are more inclined to say “ok, whatever you say” than “tell me what my options are.”

Despite huge advances, the environment is still not conducive to active participation. For most consumers, the information revolution in health care has not yet arrived. By and large, most consumers still get their recommendations from friends and family and don’t spend much time or energy making comparisons. We surveyed and interviewed consumers about where they get their information, how much they know about price and quality, and what would make them choose a different provider. What we learned tells us a lot about the ways consumers are and—perhaps more importantly—are not actively involved in care decisions and what factors get them more involved.

Our observations do confirm the obvious: there is no such thing as a “typical” consumer. Opinions vary dramatically on everything from desired control over decisions, satisfaction with care, use of information, and loyalty to a specific provider. Consumers’ level of health literacy also varies. We conducted random interviews of “people on the street” about health care topics to hear what typical responses sound like. One look at these video interviews asking about price (5) or what quality means (6) reminds us just how unique each person’s perceptions and preferences can be. Their feedback also reveals how much our own experiences shape our views and our decisions about care.

The results also expose gaps between what consumers suggest they want and what actually happens. They tell us that the health care landscape is full of contradictions. Here are some examples:

• Most consumers want to play an active role in their health care decisions, but few are confident they can find information to select better quality or lower prices.
• Most say they would be comfortable asking about the price of care, but fewer than half have actually done so.
• Consumers agree that the quality of care varies across providers, but a minority have actually compared quality.
• When asked if they would switch providers to save money, the vast majority of consumers say they would, but, once again, very few have actually switched for that reason.
• Three-in-ten have experienced a medical error, but most still report they are satisfied with the care they get.

To the extent that we can generalize, these findings describe a population that often has interest in playing an active role in care and are willing to consider changing providers to save money and get better care. However, few take action to get information or make a choice based on what they learn. It is as though we are poised for a shift toward greater consumer involvement, but have not reached the tipping point.

Adding to the possibility that such a shift may occur in the future, the demographic attribute that was most associated with active information-seeking and choice making was age. More than one’s gender, marital status, region, or education, being younger made a person more likely to report higher use of online comparisons, greater desire to play an active role in care, and a greater interest in choosing different or better care options.

Besides the energy and curiosity of youth, there appears to be several contributing factors to why consumers often don’t take action:

• lack of confidence (few felt confident they could find better or less expensive care if they tried);
• discomfort with the role of a consumer (some were not comfortable asking their doctor about price);
• lack of experience (fewer than one-in-five had ever looked online for information); and 
• lack of motivation.

In the motivation category, financial incentives do matter. One of most striking findings was how much the amount of a consumer’s deductible influenced his or her likelihood of asking about the price of a service. For those with little or no deductible, about 35 percent had ever asked about the price of care; of those with a high deductible, over 60 percent had asked. When we combined all these factors in a model, we could predict who would ask about the price of care. For an older, lower-income person with a low deductible who feels uncomfortable asking the doctor about price, 15 percent would ask. For a young, highly paid person with a high deductible who feels comfortable asking, 75 percent would ask.

Still, the general rule seems to be a hypothetical desire to participate in one’s care, but limited actions to actually make that happen.

It’s difficult to predict which factors and messages are most likely to prompt widespread participation in care, or shift the norm from expecting answers to expecting options. Will it slowly occur in parallel to the observed generational difference in using mobile technology? Will it happen sooner as the wave of baby boomers demand better service in the face of declining health? Or will there come a point where care is sufficiently expensive for consumers and information sufficiently accessible that individuals realize they can choose a better, safer, or less expensive option right now, and do so?  We don’t know.

But, whether it happens sooner or later, slowly or quickly, it does seem to be the direction we’re headed.
 

References

1. Lynch, W. D., & Smith, B. (2011, fall). Altarum Institute survey of consumer health care opinions. Retrieved from http://www.altarum.org/files/imce/CCCHC_Survey_Extended_Report_123011.pdf.
2. Lynch, W. D. (2011, September 27).  Why advocate for consumer choice in health care? Retrieved from http://healthpolicyforum.org/post/why-advocate-consumer-choice-health-care.
3. Agency for Healthcare Research and Quality. Questions are the answer: Your health depends on good communication. Retrieved from http://www.ahrq.gov/questions/.
4. Emanuel, E. J. (2012, January 3). Review of the American College of Physicians ethics manual, 6th ed. Annals of Internal Medicine, 156(1 Pt 1), 56–57. Retrieved from http://www.annals.org/content/156/1_Part_1/56.extract.
5. Altarum Institute Center for Consumer Choice in Health Care. (2011, December 13). Care is costly. Retrieved from http://www.youtube.com/watch?v=c4E-SifFrh0.
6. Altarum Institute Center for Consumer Choice in Health Care. (2011, December 13). Considering care. Retrieved from http://www.youtube.com/user/AltarumInstitute?feature=mhee#p/c/4/2gARz-BUAso.

All postings to the Health Policy Forum (whether from employees or those outside the Institute) represent the views of the individual authors and/or organizations and do not necessarily represent the position, interests, strategy, or opinions of Altarum Institute. Altarum is a nonprofit, nonpartisan organization. No posting should be considered an endorsement by Altarum of individual candidates, political parties, opinions, or policy positions.

If you chose to partake in what HuffPo referred to yesterday as “ your country’s empty displays of patriotic kitsch” — aka a State of the Union Drinking Game — last night, I certainly hope health care wasn’t one of your buzzwords.

President Obama delivered his 4^th State of the Union (SOTU) address to Congress last night, outlining his goals and his priorities for the nation in the coming year, and – as Sarah Kliff from the Washington Post’s WonkBlog put it  – “For health policy wonks, Tuesday night’s State of the Union speech wasn’t a thriller.”

In fact, in his nearly 70-minute, 7,000 word address, “President Obama mentioned Medicare and Medicaid… once. ‘Health care’ got two shout-outs. The Affordable Care Act? Not even a name-check,” (per Kliff).

To think of it another way, consider how Daily Briefing editor Dan Diamond broke it down — the president spent 44 words on health reform, accounting for 0.6% of the total speech.

As Politico pointed out, “Obama spent so little time on the [health reform] law that he didn’t even acknowledge an audience member the White House had brought to the speech — a cancer survivor who could have been an example of someone with a pre-existing condition who was helped by the law.”

The White House had announced earlier Tuesday that this young man, Adam Rapp, would be sitting in the first lady’s box. Rapp was diagnosed with testicular cancer on his 23^rd birthday, the same day that he would have lost health insurance coverage were it not for the Affordable Care Act (per CBS) – a potentially powerful testament touting the impact of ACA, and yet one that went unmentioned.

All of this is more staggering when you consider what a departure it represents from years past.

Medscape Medical News reports that, “Obama mentioned either “healthcare” or “health insurance” only 3 times, compared to 6 references in 2011 and 10 in 2010.”

The California Healthline blog lays it out a bit differently, explaining that, “Two years ago, the president spoke for several minutes — a total of 570 words — in urging Congress to pass the Affordable Care Act. Last night, Obama devoted just 44 words to his health reforms — never once touting the law’s actual impact, like 2.5 million young Americans gaining coverage through the ACA. In comparison, the president spent more than 130 words on his renewed cause of streamlining the government.”

And for you visual learners and/or infographics enthusiasts like myself out there, Dan Diamond tweeted this graphic a few hours ago, which I think best serves to drive the point home.

Wondering what Obama spent 70 commercial-free minutes talking about, then? According to the Washington Post, the economy mostly. Check out WaPo’s interactive infographic breaking down the speech by time spent/mentions per subject, and how this year’s spread compares to his previous SOTUs, here.

Meanwhile, the GOP rebuttal, delivered by Indiana Gov. Mitch Daniels, was only marginally better to us health wonks – at least for our interest’s sake. While it steered clear of “repeal and replace,” it did echo Rep. Paul Ryan’s pitch for an overhaul of entitlement programs.

“Medicare and Social Security have served us well, and that must continue. But after half and three-quarters of a century respectively, it’s not surprising that they need some repairs,” Daniels said. “We can preserve them unchanged and untouched for those now in or near retirement, but we must fashion a new, affordable safety net so future Americans are protected, too.”

No one would deny that the SOTU, above all, is an act of political theater. But were there even more theatrics occurring last night than usual? Many Beltway insiders have seemed to indicate this, saying that the SOTU was not only a list of goals for the year, but also, as Kliff put it, “an opening campaign gambit.”

If that is the case, it raises some interesting questions about what we can expect to hear in the fall. After all, as The Hill’s Healthwatch blog pointed out, “Although Democrats insist that Obama will be able to campaign on the healthcare law, it was almost entirely absent from a speech that helped establish the themes and frames of his reelection campaign.”

Just because the president seems to be steering the narrative away from health care so far doesn’t mean it won’t be issue in the upcoming presidential election. Odds are that the Republican nominee – whoever it turns out he (or she… hey, you never know!) may be – will want to discuss health reform, as it has certainly been a hot topic on the campaign trail.

How important of an issue do you think health reform will be in the upcoming election? Will a candidate’s position on health reform and the Affordable Care Act impact your decision to support him or her? Tell us your thoughts in the Comments section below!

You don’t have to agree with Congresswoman Gabrielle Giffords’ politics to admire her strength and courage of conviction – her unwavering spirit and refusal to give up throughout both her career and her recovery are emblematic of what it means to be a Disruptive Woman (hence why we bestowed Congresswoman Giffords as an honorary Disruptive Woman a few months back).

While Giffords might not have spent the past year leading our country in Congress, she has spent it leading by example. When Giffords and her family and friends spoke with ABC News’ Diane Sawyer and gave all of us the opportunity to witness her remarkable recovery firsthand, she taught us many important lessons about strength, courage of conviction and refusing to give up on your dreams (not to mention about her remarkable medical and rehabilitation teams and the role of musical therapy, a treatment pioneered by Disruptive Woman Concetta Tomaino, DA, MT-BC, LCAT, all of which we shared with you in a past post).

This weekend, Giffords demonstrated once again what it means to be not only a Disruptive Woman but also a leader, and taught us all yet another lesson, this one in humility, when she announced in a video message to constituents and supporters that she would be resigning from Congress this week.

In the video, posted to her campaign website, Giffords thanked viewers for their support and then broke the news, stating, “I don’t remember much from that horrible day, but I will never forget the trust you placed in me to be your voice. Thank you for your prayers and for giving me time to recover. I have more work to do on my recovery so to do what is best for Arizona I will step down this week.”

Watch the full video here:

Rep. Gabrielle Giffords Steps Down from Congress

Don’t for a moment think that Giffords is calling it quits for good, though (after all, that would NOT be the Disruptive thing to do). As she states at the end of her two-minute message, “I’m getting better. Every day, my spirit is high. I will return and we will work together for Arizona and this great country.”

No matter what she has in store for the future, one thing is for sure – Congresswoman Giffords is an inspiration with an indomitable spirit and we cannot wait to see what Disruptive thing she does next!

Millions of Americans disapprove of the Affordable Care Act without understanding what the act aims to accomplish or how it works.  Dr. Jonathan Gruber’s book “Health Care Reform:  What It Is, Why It’s Necessary, How It Works” breaks down the individual components of the act in order to give Americans a greater understanding of what all it includes and how its provisions will affect their daily lives.  Gruber discussed the book, ACA and the future of health care reform in the United States with an audience at Disruptive Women in Washington, DC last night.

Continue reading here…

For more information on the event click here. We have reached capacity, but will be tweeting from the event so follow disruptivewomen for all the latest. Also, check back tomorrow for a post summarizing the night’s event.

The event will feature his new book: Health Care Reform: What It Is, Why It’s Necessary, How It Works.

By Robin Strongin. We, as a nation, have made progress and I believe Dr. King would be proud.  But our work is far from complete–particularly where health care is concerned.  Another doctor, Dr. John M. Eisenberg, a physician of tremendous stature whose life was also tragically cut short (not by an assassin’s bullet but by brain cancer) was equally passionate about the dignity of life and justice for all Americans.   Dr. Eisenberg, who among other things, served as the Director of the Agency for Health Care Policy and Research (as AHRQ was known back in the day), cared deeply about access to and the integrity of health care for all Americans– regardless of skin color.

Twelve years ago, on January 14, 2000, Dr. Eisenberg gave what is, in my opinion, a brilliant speech to the employees of the Department of Health and Human Services.  As with the past two years I want to share his words with all of you today — as a reminder of how far we’ve come, and how far we still have to go.

BIRTHDAY OBSERVANCE OF DR. MARTIN LUTHER KING, JR.: REMEMBER! CELEBRATE! ACT! A DAY ON, NOT A DAY OFF!

When I was invited to welcome you to the Department of Health and Human Service’s 26th observance of Martin Luther King Jr.’s birthday, my first thought was about how honored I was to be asked.  My second thought was about what Martin Luther King’s birth could mean to a rebirth of health care in this country.  Few have had as much impact upon American consciousness.

But what did Martin Luther King think about health care?

My colleagues and I searched through his writings and his speeches, and realized that he didn’t give speeches about health care.  Martin Luther King Jr. was confronting the basic nature of American society.  He had mountains to move–and mountaintops to climb–for this country so that today we can address the issues of high quality health care for all Americans.

If Dr. King were alive today he’d be 71 years old.  He’d be eligible for Medicare.  Like many 71-year olds, he might be dealing with a chronic medical condition–maybe arthritis, or hypertension, or diabetes.  What would he think of the health care system we have today?  What would he think of the medical care he might receive?  And what advice would he be giving the Department of Health and Human Services?

No, Dr. King didn’t give many speeches about health care.  But like the rest of society, health care had to change too.

When I was a teenager in Memphis, before the Medicare program was passed, the Baptist Hospital was the biggest in town, and the proudest of the care it gave.  But if you were African American in Memphis and you went to the Baptist Hospital, you’d go in through a back entrance.  And you’d go to a segregated ward, where you would be in a big room with about 15 or 20 other people.  And your doctor, if he was black, wold not have privileges on staff.  And the same would have been true for Dr. King in Montgomery or in Atlanta.

Dr. Vanessa Gamble, who is the new director of minority afairs at the Association of American Medical Colleges here in Washington, has documented the incredibly important role that Medicare and Medicaid played in helping to desegregate hospitals.  Medicare was a lever that lifted equity and equality in hospitals.  In 1965, our Department issued regulations madating that hospitals had to be in compliance with the Civil Rights Act–which had been passed just the year before–in order to be eligible for Federal assistance or to participate in any federally assisted program.  The passage of Medicare and Medicaid legislation that year made every hospital a potential recipient of federal funds, and therefore obligated every hospital to comply with civil rights legislation if they wanted to get paid.

The law changed, but practice was slower.

When I was a medical student in St. Louis, at Barnes Hospital around 1970, researchers asked why the hospital still seemed to be segregated.  Why?  Because clerks in the admissions office–both black and white–were so accustomed to the old ways that they continued to admit the races to their old units.  The law had changed, but racial stereotypes had remained.  Racist practices were illegal, but racism was institutionalized, and the seeds of racism grew into practices that amounted to discrimination.

I ask you, is it any different today, 31 years after Dr. King was shot in my hometown, and we grieved over the loss of a great American?  Is it different 31 years after I was ashamed of the symbol that my hometown had become, when all that Dr. King wanted was to put into practice the placards that the Memphis sanitation workers wore, that read, “I am a man”?

Today, research shows that African Americans are one-third less likely to have coronary bypass surgery than whites with the same conditions.  Why? And today, African Americans with HIV are less likely to receive antiviral treatment.  Why do these disparities occur?

The easy answer is that it is because African Americans are more often uninsured.  And that is true.  But even with the same insurance, African Americans don’t have the same access to primary care doctors, specialists and hospitals.  And most distressing, even with the same insurance and being cared for at the same hospitals, African Americans get different care.  In one study I did, if you were a black woman you were much less likely to get referred for cardiac catheterization.

The reason–I fear–is that, despite Dr. King’s advances, and despite civil rights laws, and despite Medicare, racism is a part of the institution of American life, and the seeds of racism still grow into discriminatory practices.

So, now 31 years after Dr. King’s death and 35 years after Medicare broke down segregated wards in the nation’s hospitals, the question for us is:  What can we do today in our Department to eliminate these disparities, whether they grow out of the lack of insurance, lack of access, or lack of quality care for those who get access?

No matter where we work in this Department–

• At the Health Care Financing Administration
• At the Health Resources and Services Administration, where programs are supported to help access
• At the Food and Drug Administration, where safe drugs are assured
• At the National Institutes of Health, where research can identify the causes of disease
• At the Agency for Healthcare Research and Quality, where we find out why the quality of care isn’t what it can be, and where our name itself speaks of an arc, of closing gaps.

In every operating and staff division, We can use the levers that we are so lucky to have, and so privileged to use, to eliminate the barriers to high quality health care.

Because we shall overcome.

We shall overcome the disparities in health care, whether they are due to economic barriers, or institutionalized racism, or even unconscious discrimination.  We–as public servants–can build on Dr. King’s contribution to the moral health of our country to make our own contributions to the physical and mental health of all of its people.

Let’s make that commitment today.

By Jessie Gruman. “Buck up. You are going to feel bad for a year.”

This was my chemotherapy nurse a year ago, returning a call I made to my oncologist. I had left a message asking whether there was something he could do to help me. Should I feel this horrible following three action-packed months that included stomach cancer surgery and aggressive chemotherapy? 

The answer, at least as far as my nurse was concerned, was “Yes.” 

And she was right. It did take a year to regain my energy and feel well again.

The new year set me reflecting about what I’ve learned about being sick over the past 12 months that only the experience itself could teach me:

You know that old Supremes song, “You Can’t Hurry Love”? I learned that you can’t necessarily hurry healing either, even if you work hard at it. A week after that call to my oncologist – still feeling rocky – I joined a local gym’s “$30 for 30 days” New Year’s special to try to revive my cardiovascular fitness. For each of the next 30 days, I trudged down there, got on that Nordic Track machine and forced myself to flail about for 40 laborious minutes. On most days last year, I made myself walk at least a mile and practice yoga. I did my level best to choke down a tiny healthy snack almost every waking hour. Often, doing these simple tasks took all the energy and will I possessed. But I was committed, convinced that if I did them, I would get better faster.

And it still took a year before I felt normal again. How frustrating was that?

I have absorbed the very American notion that success results from hard work. By extension, health should be achievable if we comply with the admonitions of our employers, the media and health promotion advocates to exercise and eat right. I knew that my behavior didn’t cause my cancer and wasn’t going to cure it. But surely, I thought, I can speed up my recovery from the assault of chemotherapy and surgery if I really try. I had great expectations. So did those around me: “Why is she still so frail?” “Why isn’t she better yet?”

I might still be feeling pokey if I hadn’t worked so hard at recovering. But this experience slammed me up against the reality of physical illness and the limits of behavior in changing its course. It reminded me how a deep belief in our own efficacy makes it easy to slip into blaming ourselves (or the sick person) for not getting better. And it reminded me of how unruly, unpredictable and often uncontrollable the effects of disease and its treatment are on our bodies.

Another lesson: I expected that Health Information Technology (HIT) advances and opportunities to connect with other patients using social media would dramatically change my experience of treatment in contrast to my previous three experiences with cancer.

I was dazzled by the ease with which I was able to collect the information and evidence I needed to make good decisions about my treatment plan. And I am grateful for online access to friends and colleagues all over the world that allowed me to feel less isolated over this past year than I have during previous illnesses.

But once I started treatment, feeling ill extinguished my curiosity about my disease. It dampened all interest in second-guessing treatment decisions or seeking innovative approaches or learning about new technologies to aid my recovery. And only occasionally could I summon the energy to reach out even to close friends and family, much less to seek out people like me online for advice and support.

I see embedded in the enthusiasm about patient portals, decision aids and smart phones an attitude that being actively engaged with new technologies can somehow provide happy relief from the pain and discomfort of illness. Bright health information Websites, fun games designed to inspire adherence and smart medication reminder apps are presented as having the potential to turn the experience of illness into a series of problems that are easily solved through the acquisition of the technologies.

It’s true that HIT can help with scheduling appointments, refilling prescriptions and coordinating the disposition of test results to different clinicians, for example. (My clinicians mostly don’t use electronic health records with patient portals, so I had no respite from those tasks). And remote patient monitoring and assistive devices already make some caregiving chores easier. These are welcome contributions, especially as more responsibilities for care are shifted to patients and their families. But I return to the world of the healthy with the impression that the value of HIT is tactical, not transformative, at least for the sick person: the suffering remains.

My third insight from the past year is that most of the time I believed I was thinking clearly but in hindsight, I see that my judgment and thought processes were often clouded. Through my experience with serious illnesses, I’ve developed strategies for getting through the days. For example, regardless of how I feel, I always bathe, dress, eat breakfast and put my shoes on. The shoes were important: they serve as an optimistic signal to myself that I’m well enough to get up and go outside just like anyone else. Between the shoes and my exercise/diet routine, I could sometimes convince myself that I had returned to my former healthy state (conveniently forgetting my need to lie on the couch for hours).

But I had not recovered, and the clarity of my thinking was often – although not consistently – compromised. I scheduled events and travel that were unrealistic, given my stamina, and when I couldn’t be dissuaded from following through, I’d spend days recuperating. Again and again I disappointed myself (and others) by setting ambitious goals for commitments I couldn’t meet.

I know I am not unique in this. I watch friends and colleagues whose judgment is impaired by illness make similar, often higher-stakes errors. They make weird self-care choices, abruptly change treatment decisions, fire their physicians and refuse to seek advice about clearly serious conditions. We all believe that we are making rational choices when we do these things. But we aren’t, and the impact on our health and recovery can be serious.

I wanted to write about these three insights while they are still vivid for me. Standing for the past couple months on the shifting border between illness and health, I’ve experienced how (fortunately) easy it is to forget how illness eats away at the balance of one’s mind, body and spirit. As a mostly ill person glancing into the world of the healthy over the past year, I’ve marveled at the insensitivity and indifference to this imbalance by even those with the greatest love, or best intentions, training and experience.

The tools, technologies and services that constitute health care will never completely eliminate the suffering caused by illness, even if they are perfectly delivered. But that suffering might take a more modest toll if all of us – patients, professionals, caregivers, family, friends and colleagues – have clearer expectations about the arc of illness and how it affects and can be affected by each of us.

In the end, that curt directive by my chemotherapy nurse to “Buck up. You are going to feel bad for a year,” was the most helpful advice I received.

A man who contracted polio walks on crutches in the village of Kosi, 113 miles from Patna, India. Photo by Altaf Qadri / AP.

By Lois Privor-Dumm. This is a moment we have been cautiously optimistic about. Would Friday the 13^th finally be the day? Rather than being an unlucky day this year, it is the day that India has gone one year without a single new case of poliovirus!  Every time I look out the window as I’m driving around India, I witness the all-too-common sight of someone suffering the debilitating effects of the disease.  That image is a reminder about how horrible this disease is and that polio’s impact is not just on the individual, but a whole nation.

The efforts to stop this disease in India have been dramatic and it has been a roller coaster with significant ups and downs.  After 741 new cases in 2009, there were only 42 in 2010 – the country was almost there. And then in 2011, there was just a single new case in 18-month old named Rukhsar from West Bengal. It was a heartbreaking occurrence, but efforts persevered.

I am struck by the level of effort committed to this goal: government, civil society and international organizations including WHO, the National Polio Surveillance Project (NPSP) based in Delhi, UNICEF, CDC and Rotary are all laser-focused on making sure that kids even in the hardest to reach places were immunized. The Bill & Melinda Gates Foundation is also instrumental in these efforts. It was no easy feat, as we’ve seen in other polio-endemic countries including Nigeria, Pakistan and Afghanistan. India was considered one of the toughest countries to tackle, making this effort all the more impressive.

The infrastructure requires an enormous amount of coordination with stakeholders who were not part of the government or its partners. Civil society, including community and religious leaders, NGOs and others all needed to be engaged. The outcome of polio eradication efforts is not just the achievement of interrupting transmission, but the commitment that is gained by those involved in disease prevention efforts. I don’t work directly on polio, but I recognize the benefits of building an understanding of the value of vaccines, creating a system that can handle the supply chain, monitoring and evaluation and constant communication. On a recent GAVI consultation visit to India, I was very happy to hear that the discussion was about how we can leverage the infrastructure created by the polio efforts.

It is important that we learn the lessons from polio and leverage the best practices, not only in India, but in other large countries like Nigeria, where stopping Polio is also within reach. One of the biggest lessons is that there are a lot of stakeholders that contribute to a successful vaccine program – it takes a village. The government plays a big role, but it is the community, that will directly determine success. 

Building an understanding of what can be achieved, and helping to implement the strategies that can lead to that success, are ways that I am privileged make contributions as a part of my work at IVAC. We are all working towards the goal of improved health for people in countries like India and Nigeria. Today’s milestone inspires others to act in ways that can help not only polio eradication efforts, but disease prevention and control efforts more broadly. One year without a new case of polio in India is an important milestone, but as we continue to make great strides around the world, our best years are ahead of us.

By Michelle Andrews. Health care reform is no laughing matter, but MIT economist Jonathan Gruber’s new comic book on the subject aims to communicate some pretty complicated policy details in a way that, if not exactly side-splitting, is at least engaging.

In Health Care Reform: What It Is, Why It’s Necessary, How It Works, Gruber steps into the pages of a comic book to guide readers through many of the major elements of the law, including the individual mandate to buy insurance, the health insurance exchanges where people will be able to buy coverage starting in 2014 and how the law tackles controlling health care costs.

He ought to know. Gruber helped develop the Massachusetts health overhaul law and advised the Obama administration on the federal version.

Gruber says he was eager to write a book on the federal law because he believes people don’t like the concept of the overhaul because they don’t understand what’s in it. He points to polling that shows the public endorsing individual aspects of the law.

But the decision to do this in a comic-book style was his publisher’s. “At first, I wasn’t enthusiastic,” Gruber says. “I didn’t think it would be that effective. But the publisher said they had done a graphic novel about the 9/11 report. My son likes graphic novels, he’s 17. He said it’s a great opportunity, it’s a great medium. When you’re on a plane and they want to teach you what to do in case of accident, they hand you a graphic. I think it was the right call.”

Although the book is chockablock with optimistic predictions about what will happen under the new law, the chapter on cost control takes a decidedly more cautious tone. Noting that it was politically impossible for the new law to include provisions that could be guaranteed to “bend the cost curve” and control health care costs, Gruber’s character says the law took the best ideas out there about what might work and wrote them all into the bill.

He’s referring, for example, to provisions under which pricey health insurance plans, often called Cadillac health plans, will begin to be taxed in 2018, and to comparative effectiveness research to evaluate whether expensive health care treatments are actually more effective than cheaper ones.

As the title of his book suggests, Gruber is clearly an advocate for the law. But, he says, “I wanted to be intellectually honest. I believe that cost control is too hard for us to know what to do right now.” He cites two hurdles that must be overcome related to cost control: scientific, meaning we don’t know what works, and political, meaning we can’t always predict what will fly.

“I want to explain to that set of voters and readers who are really critical of this bill because it doesn’t do enough on cost contol that that is really an unfair criticism,” says Gruber. “We’re not really at a place where we could address that problem.”

However, except for the issue of health IT’s potential to improve cross-organizational working processes, American doctors have lower expectations about these benefits than their peers who work in the 7 other nations polled in a global study from Accenture‘s Eight-Country Survey of Doctors Shows Agreement on Top Healthcare Information Technology Benefits, But a Generational Divide Exists. Accenture polled over 3,700 doctors working in Australia, Canada, England, France, Germany, Singapore, Spain and the US.

As the subtitle of the report recognizes, there is an age chasm at the age of 50: physicians under 50 years of age more likely believe in the benefits of health IT; fewer older doctors do, on a global basis. Accenture points out that younger doctors are comfortable using computers during patient interactions in the exam room, compared with older physicians who prefer face-to-face conversations without what they may perceive as a disruptive interruption of looking at a keyboard or computer screen.

Physicians that more frequently use health IT are also more likely to believe in the benefits of health IT: Accenture measured 12 functions of EMRs and HIEs and found that those who more fully interact with these features perceive the fruits of the systems. 87% of doctors who use at least 9 of the 12 applications see positive impacts in using health IT; only 64% of doctors who use 4 or fewer functions believe in the positive benefits of health IT.

Health Populi’s Hot Points: American doctors are more skeptical about the use of health information technology than their colleagues in Asia, Europe and North America. US doctors are also live subjects in the experiment that is the adoption of health care information technology as part of the HITECH Act, working hard to demonstrate meaningful use to earn financial incentives in Stage 1 this year.

Meaningful use, in fact, deals with those kinds of functions that Accenture measured, finding that the more functions a doctor uses, the more likely he/she will appreciate the fruits of health IT in terms of patient outcomes, productive workflows, reducing medical errors, and reducing the risk of litigation.

US doctors are playing catch-up with their global colleagues. This is yet another benefit of the HITECH Act that doesn’t get enough attention.

Originally posted on Health Populi on January 10th.

I learned from Dr. Neumann that cost these high cost estimates are most strongly influenced by reduced productivity in adult workers with ADHD rather than direct costs of treating children with the disorder. Productivity costs include absenteeism, and reduced work output due to difficulty focusing. Dr. Neumann explained that ADHD has many “spill over effects” in that it impacts the educational system, the justice system, the healthcare system, and our work environments. Please check out our interview video for the full story.

Congressman Tim Murphy is a clinical psychologist with three decades of experience in treating people with ADHD. He is also Co-chair of the Mental Health Caucus and GOP Doctors Caucus where he regularly works to raise awareness of healthcare accessibility needs. I had the chance to interview him also at the event.

I learned from Rep. Murphy that the costs of ADHD multiply when patients are untreated.  Getting the correct diagnosis is critical, because impulsivity and problems with focusing are not always caused by ADHD. These symptoms can be caused by lead poisoning, damage to the limbic system of the brain, metabolic disorders, or even sleep apnea. Children who are inattentive should not be put on medications for ADHD without first confirming the diagnosis by ruling out other possible causes.

Rep. Murphy recommends a team approach to the management and treatment of ADHD and he believes that costs related to ADHD are escalating because some physicians are not managing children holistically, but resorting to prescribing medications without involving counselors and family directly. He sees lack of health insurance coverage for behavioral health services as a threat to comprehensive and effective ADHD treatment.

Please watch the video for the full interview with congressman Murphy.

This post originally ran on the Better Health blog on December 14th.