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 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!

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…

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 Olaoluwatomi Lamikanra. Since the introduction of mobile phones in Nigeria, the number of users has increased exponentially and usage is pretty much found in both rural and urban areas.

With regards to the internet, Nigeria has about 43 million users (total population over 155 million) which far exceeds by more than double the next African country on the list-Egypt.¹

 
There are many projects associated with mobile health in Nigeria and with the exponential growth of mobile and internet users; there is an ever increasing market. Different sectors of the economy which have an impact on the health of the populace also stand to gain a lot from the introduction of mHealth initiatives. Water, Sanitation, Agriculture, Finance and Development are a few of the sectors. In Kenya, the introduction of the mPESA, a mobile phone application where moneys can be sent via mobile phones all around the country has solved the problems of money transfers. No longer do people in rural areas have to wait until someone is visiting from the city before money arrives. They receive the money as soon as it is sent from a PESA center. At a recent WaterHackathon event organised by CCHub in Lagos, one o f the tools suggested for Water development was a mobile system to facilitate the sharing of water resources in hard hit areas.²

Examples of some projects already in place include Mobile Community based Surveillance.mCBS is a mobile platform which is given to Traditional Birth Attendants to report vital maternal and child health indicators in real time using mobile phones. Using texts designed for this purpose the TBA can transmit alerts to nearby health officials who can respond immediately thus reducing delays in reaching appropriate care at a facility.³ Other mHealth projects currently being developed in Nigeria  is being collated by Ime Asangasi (@Imeasangasi- twitter handle) here.

REFERENCES:

1. http://www.internetworldstats.com/stats.htm (accessed 26th December 2011)
2. http://www.cchubnigeria.com/watermeetup (accessed 26th December 2011)
3. http://ehealthnigeria.org/where-we-work/list-of-implementations/mobile-community-based-surveillance-mcbs/

As it turns out, we not only outsource jobs, we outsource problems. A paper in the Journal of Personality and Social Psychology reviews a number of studies about how adults react to complex social policy issues. Though health issues were not included in the research, surely these qualify – they’re complex and involve social policy, as well.

According to the authors, people – including those who are college educated – react to information differently depending on whether the issue is simple or complex.

If an issue is simple, people are willing to learn more, ‘take charge’ and act on what they know. When the issue is complex, however, people avoid learning more. Rather than learning or taking personal actions, they ‘depend on’ and ‘trust in’ government to do it.  They even avoid information suggesting government can’t do it, and only focus on information that government can. 

If the issue was not only complex but also ‘urgent,’ people are even more reluctant to learn about it.

The authors were stunned, saying all things being equal we should have less trust that someone, anyone (including government) can manage a complex issue. Instead, the studies suggest we psychologically ‘outsource’ management of complex issues to someone else.

It happens in health care often, when management of serious disease is outsourced to the clinician or when a person fails to use reasonable self-care measures believing that the health care system will fix whatever eventually ails them. Apparently it also happens in the case of social issues, in which case we outsource to the government. To make matters worse, not wanting to shatter our faith in government, we shun information that suggests the government can’t manage it.

There is good news in the research as well, however. Given simple, straightforward ‘bite sized’ information relevant to them, people are willing to learn more and take actions. Complex issues are risky territory indeed, unless they’re communicated well. 

This squares with something I worry about: that far too many important decisions are made my non-experts when the experts are not in the room. As an expert on some issues, I’ve always worried that those of us who are experts don’t know how best to talk with those of us who are not. As a non-expert on other issues, I’ve been frustrated at how hard the experts make me work to understand what they’re trying to tell me. Can’t they just make it simple?

I thought this came from my cynicism at having watched far too many late-night wranglings, idiotic, posture-for-the-press hearings and zero-sum negotiations. Now, I believe, I was seeing ‘problem outsourcing’ and ‘information avoidance’ all along and that government and other decision-makers were not immune.

In fact, it occurs to me that even government (today’s) outsources to government (tomorrow’s) when it fails to address deficits, challenging demographic trends and economic downturns.

I’m not alone in having urged for decades that public engagement was essential to creating a healthy population and a sustainable health care system. Doing so won’t be easy because both the workings of a person’s bodymind and the workings of our health care system are complex.

This research suggests a pathway forward: that is, those of us in the health policy- and real- worlds should develop a new skill set – one that perfects the art of creating relevant, bite-sized bits of information that help people (including those in Congress) remain engaged and willing to learn instead of outsourcing the problem to someone else.

The following is a guest post by Ms. Nasreen Sulaiman a Senior Instructor at Aga Khan University School of Nursing. She  has worked with palliative patients.

By Nasreen Sulaiman. Palliative care is an urgent humanitarian need for people worldwide with cancer and other chronic fatal diseases as it provide comfort and ease suffering. Nearly 80 % of the cancer patients in Pakistan present late in stages 3 & 4 with terminal disease.  In Pakistan, the concept of palliative care is in its infancy stage and need to be strengthened. In Karachi, one of the mega cities of Pakistan, only two hospices each of 20-25beds provides palliative care services where the health care professionals’ main focus is on providing the physical aspects of care. Pain management, a crucial aspect in the palliative care still remains partially addresses due to lack of narcotic supplies and other medications.  Furthermore, I strongly feel that other than providing pain and symptom relief measures, the social, emotional, and spiritual needs of the patient should also be given prime importance in order to provide holistic care to the patients. Nurses need to learn to utilize various non-pharmacologic measures such as therapeutic communication techniques, use of humor, guided imagery, therapeutic touch, relaxation exercises, religious songs and other diversional activities in order to ease the suffering, emotional distress and provide optimal comfort and support to the patients including their caregivers. Moreover, in palliative care settings, caregivers hold a great importance as they are the ones who are providing the total care and most of the time with the patients. Caregiver role strain is an essential area to be looked at. Caregiver support is another area to be looked upon. We need to establish caregiver self-help groups or other avenues to support the caregivers as they go through lot of emotional pain and need immense help and affection which may assist them to perform their roles effectively with the patient suffering from the disease.

So far we have seen women as victims of gender inequalities, but how about the role that women have as perpetuators of these inequalities? In many developing countries mothers, wives and teachers have a high acceptability of behaviors that maintain disparities between genders. For example, in some countries mothers teach their daughters that they have to cook and clean the house while their sons can keep playing. So when these daughters become mothers they assign their children the same roles, perpetuating this cycle. Mothers in some settings decide to favor her son over her daughter to attend the school and university. In some areas this is also true for health. In rural areas parents may sell their cow to pay the medical treatment of their sick son but they will not do this if their daughter gets sick.

Studies have shown that women with lower socioeconomic status and education are more likely to hold on to traditional ideas that perpetuate gender inequalities, and also more likely to perpetuate such ideas in the younger generation. For all of these reasons, it is important that in future awareness campaigns we place women not only as victims of inequalities (which gives them a passive role), but also as perpetuators of these inequalities.

My question to all of you is…Are we (as women who work for women’s rights) working to end the cycle of women as perpetuators of gender inequalities? Should we start by changing our own minds and own approaches towards interventions to decrease these inequalities?

By Saundra Pelletier. Big numbers always make people stop and think. Big birthdays, anniversaries or milestone are moments to reflect on what once was, and what could be.

Over the last few months, media coverage of the population reaching seven billion people has been especially ponderous, causing wonder about what the pressure of so many people will do to our planet. Questions abound. What will the carbon footprint of seven billion plus people be? Will there be enough food to feed everyone?  What can we do about population growth? How many people can the planet manage?

One of the ways we can help our planet is by investing in family planning. Family planning is one of the most cost-effective, high-yield interventions that exists today. Countries that invest in family planning can reap immediate health benefits, investment savings in health and education sectors, and social and environmental benefits that extend well beyond a single generation.

As I wrote in an earlier post, the ability for women here in the U.S. to use birth control to prevent or delay pregnancy gave every woman  the power to decide if and when she wanted to have children, and how many to have. And with the ability to keep families smaller, came the ability to provide for their present and future well-being.

This argument – small-family-equal-prosperous-communities– is not lost in the broader discussion about the seven billionth baby, but while pundits stress the urgent need to reduce the size of the world’s population, nowhere near enough is being done to ensure that the 215 million women who want to use modern contraception have access to do so.

The fact that this amazing milestone has made people stop and think about the people on our planet is a good thing. A good place to start on a road to a healthy, more prosperous planet is to ensure  that the women and girls, who make up just over half of the planet, can make informed choices about if and when to have children, and that they have access to the supplies to allow them to do so. Providing this access will slow the pace to reaching 8 billion.

About WomanCare Global: It is a nonprofit organization working with partners around the world to improve the lives of women by providing access to affordable, quality reproductive health products. The organization believes that every woman, no matter where she lives, should have control over her reproductive health and family planning needs, ultimately improving her ability to care for herself and her family. WomanCare Global closes the access gap by bringing the same quality products available in the developed world to developing countries. WomanCare Global serves both public and private sectors via an established global supply chain reaching countries around the world, with particular focus on under-served markets in Africa, Asia and Latin America.

However, my grandfather was not afraid to die. He desired death instead. At about the age of 90 years (calculated, since there were no records when he was born), many of his age mates – friends and relatives, no longer visited him and he suspected that they had died.  He was always told that they were alive. Nobody was bold enough to tell him the truth. One of his almost daily wishes was to join them, as he could not understand what he was still doing on earth while all his contemporaries were gone.

Many Africans, especially men, loathe leaving the world without leaving behind certain “achievements”. A man is regarded as a failure, if he is unmarried, does not own a house and more importantly, has no male child at the time of death. The absence of a male heir means the tragic end of a lineage as that family name becomes extinct. The pain of death is somewhat lessened by the fact that the deceased left behind male children, to carry on the family name.

A notable feature of the end of life in many African cultures is the belief that most deaths are not natural, but occur through supernatural means. There is always a strong suspicion that someone, usually a close relative, must have been responsible for a death in the family. Sadly, wives are usually accused of killing their husbands, while husbands are rarely accused of ending their wives’ lives. So, who is responsible for women’s death? According to my auntie, women kill their husbands, while women die as a result of their sins.

For me, November’s Man of the Month needs no introduction (… because he is my father). For the rest of you for whom he is not a genetic relation, here goes…

The Disruptive Women in Health Care team is pleased to introduce our November Man of the Month — Dr. Peter Ditto, Department Chair and Professor of Psychology and Social Behavior at University of California, Irvine and a leading authority on the psychology of advance medical directives and end of life decision making.

Dr. Ditto is best known for the series of studies he conducted examining key psychological assumptions underlying the effective use of advance medical directives, so much so that he was one of the few psychologists invited to participate in the 1993 Squam Lake conference convened to establish a national agenda for research on advance care planning. He is also a member of the Advisory Panel for the American Psychological Association’s Ad Hoc Committee on End-of-Life Issues.

I sat down with Dr. Ditto (who I more commonly refer to as Dad) to learn more about the psychological aspects of end of life decision making, his research on the subject and more.

You often use the Terri Schiavo case  as an example of the decision making challenges families who must make choices about the use of life-sustaining medical treatment for an incapacitated loved one face. In what ways does the Schiavo case encompass your “traditional” case? In what ways does it diverge?

In many ways, the Terri Schiavo case is not at all typical.  She was a young woman who was struck down unexpectedly in her 20’s. Most end-of-life decision making occurs with elderly people, often with a lot of advance warning that a situation is approaching where the person is going to lose decision making capacity. It is actually interesting that the cases that have most captured the public’s attention and most shaped law and policy on end-of-life decision making have involved these quite rare and unusual cases of young people left in persistent vegetative states (Schiavo, Karen Ann Quinlan, Nancy Cruzan). This is likely because these are cases where the issues are displayed most poignantly – a person who has lost the ability to speak for themselves, about whom everyone is uncertain what the incapacitated person would want done if they could speak, and where family members (and public opinion more broadly) have strong and differing opinions about what is the morally appropriate course of action.

But it is important to point out that these are exactly the problems that occur writ small – in less dramatic and less poignant forms – in homes, hospitals and hospices every day in the US. It is typically older people who have become too sick to speak for themselves, have not completed a little will or conveyed their wishes in any way to their loved ones, and this uncertainty can easily lead to family conflict because people have differing beliefs about the person’s likelihood of recovery, and bring different moral views and emotional vulnerabilities to the situation.

You say that, while many think the presence of a living will would have negated what quickly disintegrated into an ugly situation for the Schiavo and Schindler families, it is not always that simple. What steps can people take to avoid (to the extent it is possible) leaving their loved ones in a similar situation?

In many ways, my scientific work on end-of-life decision making can be seen as a psychological critique of living wills. The problem with living wills isn’t the idea – it is a wonderful and noble concept to try to honor people’s wishes near the end of life by having them record those wishes while they are still able – it is the execution. Quite simply, it is just a really difficult situation to find oneself in, and there are no simple band aids that are going to fix it all up.

I remember during the height of the Terri Schiavo controversy watching an attorney on the Today Show saying that spending 15 minutes filling out a living will would have solved the whole thing. Nothing could be further from the truth. Our research identified a whole host of problems with this idea – people often complete living wills that are very vague (“no heroic measures”), people’s preferences of life-sustaining intervention change over time as people’s health waxes and wanes, and even a quality living will doesn’t necessarily communicate wishes in a way that helps your loved ones (what we refer to as surrogate decision makers) predict your wishes any more accurate than they can without having seen that living will (could give you a paper site if you want one).

The best advice I can give is to talk to your family about your end of life medical wishes. This is especially crucial if you develop a medical condition where one possible trajectory is that it might leave you unable to communicate. I really don’t believe it is cost-effective to try to develop policy and law to encourage every 20-year-old to write a living will or take other elaborate measures like that. It is so unlikely that a Schiavo-like incident will happen to them, and even if it does, the situation they are trying to make decisions about is so inconceivably different from their current situation as a healthy 20-something, that it just isn’t worth a major societal investment to encourage that level of planning [editorial note: forget 20-year-olds -- an AP article published this week suggests that 64% of baby boomers also feel this way]. But as one gets older, and especially if future incapacitation is one possible outcome, that is the time when talking with your loved ones and your physician about your wishes for end-of-life treatment make sense, and it is a time when it all becomes psychological “real” enough to allow someone to really make reasonable wishes.

Let me also say though that completing a living will is not sufficient all by itself, but it helpful to think of it as a means rather than an end. The key is to make completing a living will the process that stimulates you to think about what you would really want – for both yourself and your loved ones – if you lost the ability to speak for yourself. And, most importantly, to make this an opportunity to talk to your loved ones – your spouse, children, whoever – and try to convey to them the core values and feelings that motivate your wishes.

Do you have any advice for families who find themselves in this situation but whose loved one did not leave a living will? Is there a precedent that should be used to guide decision-making in that case?

The advice I always give people is to simply try your best to take your own feelings out of the situation, and try to make the decision for your loved one that they would make for themselves if they were able. This is both something that I think makes good common sense, and if precisely consistent with the fundamental ethical principles that have always been held to guide end-of-life decision making.

That is, the goal of living wills and other forms of advance directives has always been to maintain an incapacitated person’s personal autonomy, their right to self-determination that is enshrined in the Constitution. But how can a person in a coma make decisions for themselves? They can’t directly, but if you make the decisions for them that they would have made for themselves, they your judgment can be substituted for theirs (hence the technical term substituted judgment) and it is as if they are making the decision for themselves.

It is a beautiful, elegant idea – especially if your substituted judgments are informed by documents or discussions completed prior to the person losing their decision making capacity – and as I said before it is terribly difficult to actually bring to fruition in real life. We are often not very good at predicting our loved ones wishes – think about the last time you totally miscalculated on a birthday or anniversary gift for your spouse – and complicated medical situations flooded with emotion are not likely to maximize the accuracy of your predictions.

But another finding from our research is that many, perhaps most people are more concerned with who makes judgments for them than in trying to micromanage the judgments that will be made. Many people say that the most important factor for them is that they want someone they trust to make judgments for them. They are happy in fact to let those people make judgments in real time, with all of the information available to them, and thus are more interested in appointing a trusted loved one as a designated surrogate rather than completing a detailed living will where they feel like they are ill-equipped to address specific and inherently probabilistic medical decisions.

This is why I think policy should be focused on encouraging opening up dialogue between physicians, patients and their loved ones – and encouraging the completion of durable powers of attorney for health care (legally appointing a surrogate/proxy) rather than long, complicated advance directive documents.  The focus should be on discussion not documents, and documents are most useful as a stimulus to dialogue.

Obviously the cost of care is a factor in any medical situation no one wants their family to become destitute as a result of paying for their care. How do you think changes to Medicare/Medicaid and long-term care [i.e. the repeal of the CLASS Act] might affect the public’s end-of-life wishes?

I will say upfront that I don’t know a lot about specific policy details, but regardless, here is what I do know.  No one wants to mix up end-of-life decisions with financial considerations. It is not about saving money, it is about allowing people to make their own decisions about prolonging their own lives versus letting go and not prolonging the process of dying. And versus someone else making that decision for them – whether it is ending their life prematurely, or the problem that most people really care about – which is continuing treatment past the point that it makes sense and leaves people suffering or losing their essential dignity. That is why end-of-life decision making works best in the context of a situation where medical care costs are irrelevant. It is only when people know they can get all the care they need, that they will be comfortable making decisions to forgo that care. It is important the people are provided the ability to get the care they need at the end-of-life, and that physicians are incentivized to discuss end-of-life concerns issues with their patients – not to counsel them to check out early, but to help that make the end-of-life as dignified and free of unnecessary suffering as it can be.

The ironic thing about all this is that virtually every analysis shows that the key problem in end-of-life care is overly aggressive treatment that has little chance of success and that the patients likely would not want if we could ask them. So if people are allowed to make their own decisions, and we invest resources in helping them do that in the most effective possible way, it actually would cut the exorbitant costs of end-of-life care in a natural, humane way that honors every American’s right to make their own choices about their own lives.

Thank you Dr. Ditto, we appreciate you taking the time to discuss this important element of the End of Life with us.

What do you think about living wills and advance directives? Do you and/or your loved ones have them? Do you know what your loved ones would want, should they [heaven forbid] be unable to speak for themselves? Tell us in the comment section below!

For many years now, I’ve written on this subject with Dr. Joanne Lynn, a geriatrician and hospice physician. In our book, Handbook for Mortals: Guidance for People Facing Serious Illness, we talk about the living with/dying of conundrum. Americans like to talk about “the dying” as if they were a different sort of person, in contrast to the rest of us, whom Joanne characterizes as the “temporarily immortal.” Once someone has been labeled as dying, we expect him or her to go about the business of doing just that: taking to bed, saying farewells, making peace with God, signing up for hospice, giving up daily routines and purpose. We think of the dying as a distinct group, with different interests, and an entirely different role to play in this life.

The fact is, for Boomers like Jobs, we will spend many years dying of something. Nearly 80 million of us are aging together, and along the way, we will accumulate illnesses of old age: heart disease, cancer, and Alzheimer’s. Thanks to modern medicine and public health, we will live for a long time with what have become chronic conditions. Where these diseases once killed swiftly and uniformly, they are now chronic conditions with which we live—and from which we die.

Even people who work routinely with “the dying” are loath to use the term. Last summer, I was at a briefing to talk about what Americans understood about palliative care, a medical discipline that steps in with comfort and symptom relief at any point along the disease continuum, from diagnosis to death. Most often, palliative care services are called in for people who are living with what will prove to be a fatal illness—but they are also appropriate for people living with serious, chronic conditions.

At last summer’s briefing, a pollster urged attendees not to use the words “terminal illness” or “advanced illness,” word s that people he had surveyed associated with death and dying. Talking about death and dying makes it almost impossible to talk to people about what else matters in their lives: symptom control, affordable care, sustainable resources, family support.  When the leaders in palliative medicine recognize that death talk is just that—it puts a stop to the conversation—it is no wonder that individuals do the same.

Steve Jobs did not want to be a poster boy for the dying.  But he did confront his own mortality. There’s his famous Stanford commencement address, and the anecdotes coming to us now from his biographer, Walter Isaacson. He worried that perhaps there was just an “off switch,” a click into the void. He sometimes believed in God, and sometimes did not. He got up most days, put on his black turtleneck and jeans, and went to work.  Who was to say which day would be his last?

There are problems with prognosis, and even the most skilled physician struggles with it. In one study of nearly 10,000 seriously ill hospitalized patients, nearly half of the patients died within six months of enrollment in the study. But the best medical predictions by statistical methods and the patients’ own doctors had trouble figuring out just who was dying. One week before death, the average patient still had a 40% chance of living another six months. The day before death, the average patient still had a 10% chance of living another six months. It’s a tough decision to make.

In our work, we’ve come to encourage physicians to approach the issue differently, and to ask themselves if they’d be surprised if a patient were to die within the next six months. If not, we suggest that other health care options, including palliative care and hospice, be considered.

Steve Croft was aghast when he heard about Jobs’ seeming “magical thinking.” “How,” he asked. “Could such a smart man be so stupid?” This, upon hearing that Jobs had delayed what might have proven to have been lifesaving surgery early in the course of his disease. It’s not a fair question. Sure, how could someone we think of as a visionary have such feet of clay? Because, like the rest of us, he was only passing through.  None of us wants a passport stamped for the country of the dying, but many of us will live there for a long time on a visa.

Cook Medical’s Zilver PTX is likely to become the first peripheral drug-eluting stent (DES) to be approved in the U.S., after an FDA advisory panel voted unanimously in favor of the device on Oct. 13. Approval would give the sponsor, Cook Medical (Bloomington, Indiana) access to a peripheral arterial disease (PAD) market valued at $1 billion, depending on whose figures one relies.

I attended the Oct. 13 advisory committee hearing for the device and observed the panel members comment that this was among the best submissions they had seen in some time. Cook presented a clear study that met all primary endpoints and showed improvement over percutaneous transluminal angioplasty, the current standard of care. To non-FDA experts like myself, it seemed as though Cook was recognized for setting a new bar for conducting clinical trials and collaborating with the FDA.

I imagine that Cook Medical’s leadership was able to make all the right clinical trial investments necessary for the long-term viability of the product’s market value, not just the ones that were on display at the advisory panel meeting.

Simply put, such a prudent investment for the long term is equally, if not more, essential when planning for the reimbursement success of any new medical device. Medicare already pays for peripheral endovascular interventions, both in the out-patient and the hospital in-patient settings. So as any “new” interventions receive FDA approval, such as a Zilver PTX, Medicare likely would pay for these within the existing payment levels. After all, these are existing technologies, using existing drugs, being utilized in a new application, so Medicare payment would default to those existing payment classifications.

How then can makers of novel devices – with clinical improvements over standard-of-care – seek premium pricing? Device developers must calculate the impact of a higher product price on customers’ (hospitals) before commercializing at a premium price. With the same Medicare reimbursement for the procedure regardless of stent cost, hospitals will think carefully about paying a premium to use a new device, such as the Zilver PTX. This makes premium pricing very difficult without some justifiable improvement elsewhere in the disease treatment continuum.

The Medicare reimbursement bar has been raised. To seek any additional product reimbursement for the hospitals, the device must prove it delivers “significant clinical improvement” over the standard of care currently reimbursed by Medicare. “Significant clinical improvement,” is a loosely defined standard, however, and is applied subjectively for each new technology. For example, does a new neurovascular implant have to show evidence of superiority over “standard of care” in a pivotal trial to justify a higher price? Is proof of non-inferiority of a new continuous glucose monitor sufficient? Is a separate study necessary? Should we invest scarce funding to support studies when non-inferiority is the goal?

I think the key to demonstrating substantial clinical improvement lies in demonstrating patients’ functional improvement – this could be walking, resuming activities of daily living, returning to work or reducing days away from work, and other patient-reported outcomes measures – in combination to show that the new treatment has improved a patient’s life. Medicare wants to see the measurable “So what?” quantified and compared to the “So what?” of existing treatment options. I am certain that Medicare will no longer be satisfied by clinical results that are considered equal to existing care. The mandated Medicare evidence bar – “significant clinical improvement” – is the key to product success. After all, “significant clinical improvement” is necessary to trigger a new technology add-on payment, reimbursable to hospitals in addition to existing payment.

Preparing to demonstrate significant clinical improvement for reimbursement purposes is an essential part of clinical trials strategy and execution – it must be built into planning and costs of clinical trials management. Doing so as part of clinical trials will accelerate time to market. Conversely, not having these data for Medicare may delay sales and revenues indefinitely.

Adi Renbaum, senior VP of health policy and reimbursement for the Neocure Group (Washington DC), joined the Neocure Group shortly after it was founded in 2006, and today heads its Washington DC office, where she leads the health policy and reimbursement practice. She has more than 17 years’ experience in the field of regulatory and clinical development strategies, and has negotiated directly with CMS and commercial payers to expand coverage and secure reimbursement for clients’ technologies. She also works closely with medical and specialty societies to build consensus about innovative products and for support with payers.