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.

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?

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…

The day may come, however, when our family may need to provide her with the support I see my friends providing to their parents. Some individuals who would like to be more independent, can’t be. The enabling systems to allow that aren’t sufficiently well developed and public policies haven’t yet caught up with the needs of older people and their family caregivers.

That’s why just a few weeks ago Disruptive Women launched Health In Place. This blogsite reported on the launch event. I recommended it as reading to catch up on and a movement to follow – and better yet, engage in.

Perhaps it was HIP that raised my own awareness and made a very small article news article jump off the page over the holidays.

It was about the Aetrex GPS Shoe (www.aetrex.com/aetrex-gps/), which uses GPS tracking technology embedded in the right heel to do real-time tracking of the wearer.  GPS tracking sends a signal to a central monitoring station to show the wearer’s location and relays that information to a tracking website for monitoring by caregivers.

Even better, caregivers can set up a geographic boundary known as a “geozone” and if the individual wanders off and leaves it, are notified via an email or SMS text to a mobile phone. Caregivers can also get emergency tracking in case they need to locate a loved one immediately.

What a wonderful application of availably technology to health and caring. I’ve written extensively about the nature of healing and healers and how our traditional definitions (which restrict “healers” to those in clinical roles) are narrow and no longer sufficiently embracing of the variety of those who contribute to our health and care.

I’m not sure if the folks at the GTX Corporation (www.gtxcorp.com) believe they are healers, but in my book, they are. Bravo to them for what they’re doing to contribute to lowering costs of care, lowing the risks associated with family caregiving and improving the quality of life for those involved.

Today, you can receive text messages, voice mail, or email reminders for just about anything from medications, to testing, to health tips, or appointments.  Information and help where you want it, when you want it, and how you want it are transforming the relationship between you and your providers.  Teens get help with diet and smoking cessation as well as disease management.  Elders and their care givers get live follow up and real time transmission of important vital signs through remote patient monitoring that can alert providers to developing problems at home.  Ambient assisted living systems that track movement at home, and personal emergency response systems help elders stay at home but alert others when a condition changes over time or in an emergency.

Mobile personal monitoring is getting a boost from other companies who recognize people want to be on the go, and are not held back by the need to monitor or address health needs in traditional ways.  In the next several years, Ford Motor company plans to provide “First Assist” emergency health care instruction through its OnStar system. They will provide allergy alerts based on day-to-day location indices of allergens, and glucose level monitoring alerts via dashboard applications.  Future plans also include voice requests for health information and updates, seat sensors to detect electrical heart rhythms/problems, and stress reduction responses.  Leveraging existing technologies such as GPS, telecommunications, and internet access is catapulting us into an age of ubiquitous computing where our environment is instantaneously and unobtrusively enabled by computer assisted functions.

Electronic medication reminder boxes and vials already offer services to remind people what to take, and when to take it with flashing lights and compartments that release.  Failure to respond on schedule triggers follow up to the consumer and family members. Simple transmission of daily weight and other vital signs is easily performed through a variety of economical products including one scale that will post your weight on Twitter.  Edible computer chips are being tested to report proper drug ingestion. 

Thousands of cell phone applications provide tools to receive and send health information as data points, documents, and static as well as moving images.  With 24/7 expectations, we now have 24/7 access to information and data interactivity.  Technology is delivering on the promise to help improve care.  It is always on, and fits in our pockets. 

*Mark D. Smith. Disruptive Innovation: Can Health Care Learn From Other Industries? A Conversation With Clayton M. Christensen.  Health Affairs, 26, no.3 (2007):w288-w295. (published online March 13, 2007; 10.1377/hlthaff.26.3.w288)

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!

It’s a tough conversation to have with oneself, since most of us don’t want to admit our mortality, let alone with family who cannot imagine a world without us. Yet it’s necessary that our opinions are clear and in writing to ensure our wishes are honored when the time inevitably comes, and the holiday season offers a unique opportunity to have these difficult discussions with family and friends gathering together.

According to a Pew Research Center survey conducted in 2006, only 29 percent of people had a living will; and in 2007, a Harris Interactive study (PDF) put the proportion with advance directives at two in five. With the aging population growing, these statistics need to be improved upon, and that’s where Disruptive Women comes in.

Last year, around this time, we featured a post from Disruptive Woman Alexandra Drane, who launched the Engage with Grace movement to make sure all of us understand, communicate, and have honored our end of life wishes. This year, to remind people to ask their loved ones Alexandra’s five questions (for a reminder on what the questions are, check out this post from Disruptive Women’s archives) and provide people with the resources they need to plan for the future, we’re dedicating a whole month to end of life care issues. We’re planning to feature discussions about where to start when making an advanced care directive, how clinicians are having these types of conversations with their patients, and what end of life care is like around the world.

We’re excited to share new content from Alexandra, as well as posts from our newest Disruptive Woman, Janice Lynch Shuster, PhD, author of a number of books on end of life care including the recently re-released Handbook for Mortals, which she co-wrote with Drs. Joanne Lynn and Joan Harrold. Our man of the month, Peter Ditto, PhD, Department Chair and Professor of Psychology & Social Behavior at the University of California, Irvine, will also share his expertise in end of life care in an interview with his daughter, Hope, a member of the Disruptive Women team.

Please feel free to contact the Disruptive Women team if you’re interested in writing a post about end of life care, or if there is anyone whom you think we should approach about guest blogging on the topic.

Stay tuned!

Dear Colleagues,

Health Information Technology and the substantial HITECH investment are a critical part of putting the U.S. health care industry and the U.S. consumer population on the 21^st century path to improved health and health care. The investment however is almost exclusively focused on enabling the provider infrastructure. We need a mirrored infrastructure that will help patients and caregivers navigate, access and understand the growing health information universe and what it means to them.

The newly announced “Putting the IT in TransITions” initiative is a critical opportunity to help consumers better access and use their own healthcare information, but only if it is put in context and made truly consumer friendly. This means not just plain language but with tools, translation and interpretation resources that make it actionable.

The two-page project summary “Patients and Caregivers the 1^st Step Not the Last Mile” describes an initiative that would explore how to enable a parallel consumer-facing infrastructure that complements and readily connects to the provider-facing infrastructure. Although ultimately there will be one shared infrastructure the timing and challenges of the emerging provider connectivity runs the risk of leaving consumers as the last mile.

We are stepping up to the IT in TransITions two-week challenge with a deadline of October 28, 2011 by seeking broad support for the project and its goals. We have many committed partners and we need your help in emphasizing to HHS and the industry leadership the critical importance of the consumer component to their efforts.

If you can lend your name and/or your organization’s name to this letter of support please email kossoncare@starpower.net by Thursday October 27th.

Your information, exactly as you provide it, will appear after the following statement: We the undersigned agree that successful care transitions need increased consumer IT support and focus consistent with the goals of the Patient and Caregiver Gateway project.

To kick the tires on the survey a bit, I spent time on the phone with the “3 M’s” of Manhattan Research — Meredith Ressi, President; Monique Levy, VP of Research; and, Maureen Malloy, Senior Healthcare Analyst who can recite the survey data backwards and forwards. Together, they guided me through the topline on digital health information use among U.S. adults in 2011.

The 56 million US adults who access data via electronic health records (EHRs) was a surprise to me, and to this trio, as well — so much so that they revisited the study methodology and samples to ensure that this was not a statistical anomaly. It’s not. But as with all numbers, it’s insightful to know what lies beneath the raw stat.

The big number to consider here is 24% of U.S. adults who are accessing their personal health information (PHI) from their physicians’ EHRs. In this case, the 56 million tend to be younger, better educated (more with college education), higher internet adoption, and more likely to own smartphones and tablet computers. They are also more likely to observe a physician doing digital activities during the consult – such as seeing the doctor entering information into the EHR.

What’s common among those consumers interacting with their EHR-borne health information is that they are more frequent online health information seekers than people who are non-users of their EHR data: three times more likely.

Monique Levy pointed out that EHR information users are “more acutely aware of the pain points they have in the health system: they are more likely to identify certain problems and barriers in managing care. They are a more self-aware group about what’s working, what’s not working, and what they need” out of the health system.

What’s beyond the 56 million (24%) U.S. adults who Manhattan Research calls “users” of EHR information? Another 41 million who are interested in doing so but haven’t yet.

This leaves millions more people in America who don’t appear interested in accessing their health information via a doctor’s EHR. Cybercitizen Health identified the least-engaged group within this cohort: 15% of people who have seen a doctor in the past twelve months whose doctors provided access to medical information on an EHR, but neither accessed their EHR data nor are interested in doing so.

Thus, the consumer side is only one-half of this equation: physicians, of course, play yang to the patient’s yin. In Taking the Pulse, Manhattan Research’s annual physician poll, the company found that doctors’ adoption of tablets (especially the iPad) continues to quickly grow. Their use will turbocharge physician adoption of mobile EHR capabilities, and physicians’ ability to share data, up-close-and-personal, and in seamless ways without disrupting workflow in the exam room which can happen when sitting behind a computer monitor.

For Cybercitizen Health, Manhattan Research surveyed 8,745 U.S. adults age 18 and over via online and phone in the third quarter of 2011.

Health Populi’s Hot Points: In The Two-Way Street of Patient Engagement in Health IT, I wrote in California HealthCare Foundation‘s iHealthBeat on September 27, 2001, “In the two-way street that is patient engagement, it is health care providers  who will play a key role in getting the mass-middle of people more involved in  their health data. That may be a lot to ask of health care providers given their  already-cramped workflow, but doctors and hospitals will be motivated by at  least two market drivers: payment and consumer pressure.”

Manhattan Research found that people who have begun to embrace their PHI via EHR tend to have physicians who bring them into the process in the exam room: physician engagement with meaningful use is drawing patients into conversations about their personal health information and, therefore, their health.

Further fanning the flame of physician involvement is Meredith Ressi’s observation that, “once you get an iPhone or Droid in physicians’ hands, it changes their behavior.” She noted that access to the web is the first changed behavior: doctors are doing medical information searches via smartphones wherever they are — and with iPhones, the use of simple-to-access apps further bolsters their mobile health behavior.

Originally posted on Health Populi on October 14th.

There is excitement in the air about how mobile phones are the breakthrough technology for changing health behavior.  Last Saturday, I was convinced this must be true. In two short hours, I:

• Skimmed the NYTimes op-ed, You Love your iPhone. Literally, that (questionably) claimed that functional MRIs show that our brains react to our iPhones the same way they do to the proximity of someone we love.
• Received an email on my iPhone from NYC Health Business Leaders inviting me to come to a meeting: Is Mobile Health the Next Killer App?
• Came across this podcast on how mobile technology is going to vastly change care for seniors with chronic conditions.
• Read a beautiful review of the behavior change literature that asks the question Is Mobile the Prescription for Sustained Behavior Change?
• Received a text about the highly anticipated release of the iPhone 5.
• And came across the entire kitchen crew of a fancy restaurant staring into/talking on their mobile phones.

Now I’m sure that the seductive power of our mobile phones hasn’t escaped your notice. Certainly, if you are concerned about people engaging more fully in their health and health care, you have seen the thousands of apps that intend to exploit the combination of widely available mobile phones with advances in Web-enabled technology as the new best way to spark and sustain health behavior change.

I love the optimism that has driven the development of these apps to date.  The theoretical reasoning of the behavioral scientists that finds mobile apps to be a potential game-changer – this is why this technology is different and what it offers above all other technologies and approaches — is subtle and compelling. And I love imagining the personalized guidance and support that will be possible to deliver to us once these theories are transformed into more sophisticated apps for our mobile devices.

I also love it because this health and lifestyle behavior change stuff is really hard for us – whether we are individuals or caregivers or clinicians…and it is really important: it’s necessary for many of us to act differently if we are going to become or remain active and healthy.

We love our phones. They distract us when we are lonely or bored and inform us when we are lost or curious.  They allow us freedom of place and space.  And the rewards they offer are immediate, efficient and entertaining.  But we mostly love them because we like what they do for us.

My friend Lou has early Alzheimer’s and her caregivers have set up a locator app on her iPhone to track her when she goes out.  When her resentment about being spied on builds up, she hides her phone in her house and heads for the door, almost always forgetting where she put it or that she hid it at all. Even in her confused state, she’s willing to let go of that treasured phone —which is her main link to the people she loves — when she associates it with negative emotions and experiences.

I am trying to gain weight.  I want to eat and know I should eat every hour and I have a full array of tempting snacks by my side at all times.  And I have carefully set up an app to deliver a different alarm every hour to prompt me to eat. Yet I reliably delay my response to each alarm and then forget to eat the nuts and even the cookies.  You cannot imagine how easy it is to turn that little sucker off and promise myself that I’ll eat as soon as the conference call is over, when I finish this paragraph, or when I get off the subway.

Two small examples but telling ones.

While mobile phones can do so much – and will soon be able to do much more —to monitor our movements, tailor information to our interests, send us strategic messages, and remind us with alarms, our will is still our own.  When the device becomes the driver of change, rather than us, it becomes an electronic substitute for a nagging clinician or spouse, a voice that reins in and confines, bringing out our worst adolescent tendencies: mischief; defiance; disobedience.  I’m not sure that an app exists that can wrangle that impulse into submission in most of us most of the time.

We prefer fun, enjoyable activities and avoid irritating ones.  If an app becomes the source of unwelcome advice or beeps, or we feel intruded upon or our response to some app brings unwanted attention to us, we will have no problem circumventing it.

As much as we depend on the convenience of our mobile devices, they are only tools.  While my mobile phone can link me to information, advice, friends and support, I don’t confuse it with them. I can get to these valuable resources via my phone when I want them.  But I know that when I am sick, the disease is located in my body, not my phone.  Regardless of what is going on with my phone, I’m the one who has the cancer and I’m the one who takes the chemotherapy drugs, pleased as I would be to delegate that responsibility to an inanimate object.  When the alarm goes off that your mom has fallen, it is your hands or the hands of the EMR technician that help her get up, not the mobile device. When Lou gets lost, even when she has her phone with her, it is her caregivers or the police who find her and bring her home.

I am convinced that behavioral scientists and app developers will be successful in getting those mobile phones to do what they want them to: deliver clever tailored behavior change strategies directly to us through our mobile phones.  And I am equally confident that many of us will try those apps. But if they don’t do what we want them to —if they become a burden, an intrusion or a bore —we will ignore them, delete them, or, when all else fails, carefully place our beloved phone in the vegetable drawer of the refrigerator and head out the door.

I know, I know it’s October…but hey, we are disruptive so celebrating on the exact day seems so well, ordinary.  And the past three years have been anything but ordinary.  We all had something to say about the new health reform debate and ultimate passage.  We still have much to say about the new law, as well as a multitude of other topics.

One area that I have been thinking a lot about is the exploding area of mhealth (mobile health), remote monitoring, and telehealth.  Technology alone is not the answer of course.  But technology, coupled with innovative care delivery models (think health reform), and patients, caregivers and clinicians more comfortable with smartphones, apps, data sharing and online connectivity have all contributed to a new framework of health and wellness.  Aging in Place, staying connected, eICUs, PHRs and EHRs.  Exciting stuff.

But, like most solutions in health care, success must look beyond the health sector.  Here’s what I mean by that: staying healthy can’t just take place in a health setting or even in your home.  Maintaining your health and wellness or managing your chronic disease or disability requires a connection where ever you are — in other words, Health In Place.  Young people with epilepsy and diabetes still attend school, go on vacation and use public transportation.  Elderly individuals aging in place still travel to visit gradnchildren. And, adults maintaining exercise and nutrition regimens who travel for work need to stay connected to maintain wellness.  The Health In Place concept takes this broad view and will be bringing together thought leaders from not only the health field, but the telecom, travel, automobile and real estate sectors as well. 

The organizers of the 2011 mHealth Summit were so taken with this idea that they invited Disruptive Women to launch the Health In Place or HIP initiative with a reception on December 6th–we couldn’t be more thrilled or more flattered. So SAVE THE DATE:

Health In Place (HIP)™ — Disruptive Women in Health Care is Launching a New Initiative

Tuesday, December 6, 2011, 5:00–7:00 PM
Location: Pose Ultra Lounge & Nightclub–at the Gaylord Hotel in National Harbor (Washington DC)

Overview: The concept of Health In Place™ is built around the idea that our homes are more than just homes, our offices are more than just workplaces, our schools are more than just places of learning, and even our cars are more than just modes of transportation. Thanks to wireless communications and emerging technologies, each of these venues has become potential health and wellness centers or HIP. No matter where we are or what we’re doing, we can be protecting and enhancing our well-being. For this facet of 21st century health care to achieve its full potential — for more Americans to have the tools to link to their caregivers, to protect against and manage illness, while monitoring their well-being — a number of public policy issues are involved, cutting across multiple disciplines from health care regulations and benefit structures to tax policy to technology incentives. That’s why Amplify Public Affairs and the Disruptive Women in Health Care® blog (along with our media partenr, The Hill) have formed the Health In Place™ Initiative — to bring together policymakers and change agents from multiple industries.

 Please join us as we unveil this new initiative.

 Speakers:

• Robin Strongin, President & CEO, Amplify Public Affairs & Creator, Disruptive Women in Health Care — Moderator
• John Marttila, President, Marttila Strategies (a national polling expert)
• John C. (Jack) Lewin, MD, Chief Executive Officer, American College of Cardiology
• Pamela Cipriano, PhD, RN, NEA-BC, FAAN, Professor, University of Virginia School of Nursing, Editor-in-Chief, American Nurse Today, 2010-11 Institute of Medicine Nurse Scholar-In-Residence (and a Disruptive Woman blogger)
• Halle Tecco, Founder & Managing Director of Rock Health (and a Disruptive Woman blogger)

Stay tuned for more information.  And by all means, please come out on December 6th and celebrate with us.

At three years of age, we are not only Disruptive, we are also HIP.

In the study, J.D. Power segments brick-and-mortar pharmacies from mail-order. Brick-and-mortar pharmacies cover chain drug stores, supermarkets and mass merchandisers/Big Box stores.

What drives top performance for consumers shopping brick-and-mortar pharmacies are the ordering and pick-up process, the store itself, cost, the non-pharmacist staff, and the pharmacist.

In mail-order, quality translates into cost competitiveness, prescription delivery, ordering, and customer service. Consumer satisfaction with the mail-order Rx channel declined between 2010 and 2011, primarily due to ordering and delivery problems. But due to price and challenges in switching back to the brick/mortar option, mail-order customers are largely expectedly to remain in the channel and not switch to a store. One-third of consumers are required by their insurance provider to use mail-order for maintenance and repeat scripts – these customers are even less satisfied with their pharmacy than those who freely choose to go the mail-order route for prescriptions.

J.D. Power, analysts on consumer satisfaction, notes that Amazon has set a high bar for speed and convenience in the online shopping world. Mail-order pharmacy has a ways to go to catch up to those standards.

High customer satisfaction ties to those consumers who have an ability to have a private conversation with the pharmacist or staff in a private area of the pharmacy. Furthermore, added services such as immunizations and wellness services are driving higher consumer satisfaction with those pharmacies who offer them.

The highest rankings by segment were:

Chain drug stores: Good Neighbor Pharmacy, Health Mart, The Medicine Shoppe (all well above competitors in the segment)

Mass merchandisers: Target, Sam’s Club, Costco (with Walmart at the bottom)

Supermarkets: Publix, Wegmans, Winn-Dixie, Jewel-Osco, Vons (all above the segment average)

Mail-order: Kaiser Permanente Pharmacy, Humana RightSourceRx (both well above competitors).

This is the fifth year J.D. Power has conducted the national pharmacy survey. The poll, fielded in May and June 2011, was conducted among 12,300 consumers who filled a new prescription or a refill in early 2011.

Health Populi’s Hot Points: The pharmacy has always been a touchpoint in consumers’ health, but its importance is growing as a primary care site for wellness, prevention, immunization and a growing menu of consumer-driven primary health care services. The supermarket channel, in particular, has begun to marry messages about nutrition and healthy food with chronic health condition messaging. For example, Wegmans (ranked #2 after Publix stores, features a food/health related display adjacent to the pharmacy: this month, my local Wegmans has been promoting quinoa’s nutritional contributions to healthy eating at a “pharmacy teaching table.’ In the winter, the pharmacy promoted the purchase of frozen blueberries to enhance shoppers’ intake of the fruit’s health benefits in the cold season.

This is another example of health being where our Surgeon General says it is – not in isolation in the doctor’s office, but where we live, work, play and pray. Let’s add the word “shop” to that mantra.

On a personal note, I have a comment to make on J.D. Power’s mail-order pharmacy results. In the past six months, we have been forced to switch to the mail-order channel to acquire a repeat prescription for a member of our family. The company, whom I will not name, is one of the poorer performers on the table – and no surprise to me. The company has a cumbersome, un-helpful, poorly designed website which it claims streamlines the process. For the first three months of the fulfillment process, I’ve had to dial into the company’s call center – which has no hours on the weekend, when I, and most working people, usually run household errands. Suffice it to say, after speaking with the doctor-prescriber’s insurance associate, our experience with this mail-order company was not atypical.

Would that this company, whose services I am compelled to use, could demonstrate the efficiency, accessibility, and friendly quality of my favorite shoe purveyor – Zappos. This is a case where I cannot, if you’ll excuse the pun, vote with my feet.

In the post-recession economy, consumers are living in an era of the new sustainability, looking for products and services from organizations that help them conserve resources, save me money, nurture creativity, and keep me healthy. In their report, Eyes Wide Open, Wallet Half Shut, Ogilvy surveyed consumers’ perceptions of their new lives shell-shocked by an economy that changed everything for them and their families.

The new household economics are driving a DIY economy. From DIY’ing home improvement and photo developing and sharing to self-booking travel with Expedia and trading shares via Schwab online, consumers have adopted, en masse, a self-service ethos.

As people do more DIY in life, they’re doing the same in health for themselves and those for whom they care — aging parents, sick mates, ailing kids. Both healthy and chronically ill people self-track their steps, their food intake, their clinical numbers like glucose and blood pressure. Some download mhealth apps to their smartphones to DIY health. Some people pay for personal emergency response systems for their parents to ensure their wellbeing at home. Others seek health information via online search and in social networks, on- and offline. Further up the social networking curve, Very Empowered Patients share their health data online in communities to CureTogether.

Household economics aren’t just about take-home pay: they’re about benefits and costs that translate across dimensions of our personal lives — increasingly, health.

Health Populi’s Hot Points:  This is the new retail health. For many health consumers, the journey begins with the pharmacy: couponing prescription drugs and OTC product coupons clipped from the Sunday paper, more recently printed from online couponing sites and received from Groupon via mobile phones.  

Well beyond health coupons, people are looking to connect with health care digitally. It’s about convenience, control, access, sustainability. Intuit found that not only do three-fourths of consumers in the U.S. want to engage electronically with their doctors but, if physicians don’t engage with them, one-half of patients will consider leaving their practices. This kind of voting with feet is another flavor of retail, DIY  health.

DIY health is engaging. And it will continue to grow as U.S. health consumers take on more responsibility – financial and clinical – in their health. This is inevitable as costs continue to spiral out of control, and the economic recovery sputters.

Originally posted on Health Populi on September 20th.

According to the study published in the journal Health Services Research, 21 percent of American adults said they had delayed care for non-financial reasons compared to 19 percent that cited cost as the primary reason for not seeking healthcare.

Those non-financial reasons included not being able to get to a doctor’s office during working hours, long commutes to the medical office, or not being able to get an appointment soon enough.  As the study’s lead author said, “In reality, there are all kinds of reasons why people can’t get the care they need when they need it.”

There are at least a couple of important points to take from this report.  One is that healthcare providers have to continue exploring creative ways, from telemedicine to non-traditional office hours, to meet the needs of today’s patient population.

More importantly, though, as we’ve said often over the past several months, coverage and access are not synonymous with each other.  The Affordable Care Act makes health coverage available to all Americans, but that doesn’t mean that all of these newly-insured patients will have easy access to quality care.  If some patients today, as the study indicates, have difficulty getting an immediate appointment with a physician, that problem may only worsen when an influx of new patients, the aging of the baby boom generation and a future shortage of healthcare professionals converge.

How do you feel about health-related social networking? Would you join an online health program? What concerns – privacy, quality of service, etc. – do you think this presents?

Read the full text of the Healthcare IT News post here: http://healthcareitnews.com/news/social-media-tools-may-reduce-attrition-online-health-programs

“There is a better way – structural reforms that empower patients with greater choices and increase the role of competition in the health-care marketplace.” Rep. Paul Ryan (R-WI)August 3, 2011

The highly charged political debates about reforming American health care have provided tempting opportunities to rename the people who receive health services.  But because the impetus for this change has been prompted by cost and quality concerns of health care payers, researchers and policy experts rather than emanating from us out of our own needs, some odd words have been called into service.  Two phrases commonly used to describe us convey meanings that mischaracterize our experiences and undervalue our needs: “empowered patient” and “health care consumer.”

As one who has done serious time as a patient and who spends serious time listening to talks and reading the literature that use these words to describe us, I ask you to reconsider their use.

“Empowered patient” The fabrication of the verb “to empower” from the noun “power” was used in the civil rights and community development movements to describe a benevolent bestowal of influence on disenfranchised individuals and groups by those who had previously excluded them.  When used in relation to health care, the word perpetuates the idea that we are passive entities, waiting to be gratefully endowed by our clinician or a new policy with the right and ability to act on our own behalf.  Our “empowerment” takes place not as a result of our own will or preference, but rather because we have been given permission to act in a different way by some external agent.

This word is often deployed as an egalitarian euphemism that cleverly disguises cost- and responsibility-shifting from professionals and institutions onto us, for whom fulfilling those responsibilities can be a heavy burden.  For example, because the American health care system lacks a functioning electronic medical record system, we have become “empowered” by HIPAA to carry our own health records and tests results from doctor to doctor when we are ill.  Similarly, we are “empowered” to be cost conscious and shop for less-expensive providers and services when we are laboring under the weight of our $5,000 deductible.  We are “empowered” by the note on the name badge to ask every employee who walks into our hospital rooms whether he or she has washed his or her hands.

Used to describe patients, this word does not connote new power – rather, it signifies new responsibilities.  I may not like these new responsibilities and I may struggle to fulfill them, but I would rather know that I must do so if I am going to benefit from my care than to be lead to believe these new responsibilities are a choice or a gift that I have an option to claim.

How about if you call me an active patient, or an informed or engaged or knowledgeable one?

“Health Care Consumer” In focus group after focus group, we have said we don’t want to be called health care “consumers.”  There is a long tradition of explaining why health care is not a market commodity.  In their 2008 article “The Patient Life: Can Consumers Direct Health Care?,” Carl Schneider and Mark Hall provide a data-filled analysis of how current conditions in American health care simply do not support the standard characteristics of consumerism.  For example, good choices – indeed any choices of health plan or primary care clinician — do not exist for many of us.  Comparative cost and quality information is not available on almost any of our relevant choices.  And many doctors resist discussing issues of quality and cost with us: They often have limited knowledge about the wild variation in health care pricing and little meaningful information about the quality of the care they, their own clinic or their hospital delivers.

Calling us “consumers” perpetuates the notion that by the mere act of giving us some information – however spotty –  we will be transformed into making objective, informed judgments about our care when it is simply impossible to do so right now.  It allows those who use this term to convince themselves that because this is a role we easily fill when purchasing lettuce and flat-screen TVs, finding the right health care should be no different.  And it fuels the underlying belief that we will naturally seek out high-value care and thus influence the health care marketplace … and in doing so exert demand that solves the problems of cost and quality that have long proved resistant to the efforts of powerful actors like the government, private payers and health professional groups.

How about dropping the commercial language and calling us oh, say, “people” or “employees?”  Or if some descriptor is needed, how about taking a clue from the Whole Person effort of the 80’s, which brought us “people with AIDs” instead of AIDS victims.  “People with Medicaid” or “people without insurance” would work.

The words “empowered patient” and “health care consumer” are currently being used as subterfuge to mask an agenda that shifts risk, costs and responsibilities to patients and families.  Their use diminishes our individuality, our autonomy and our dignity.  And the underlying assumption those words share is that performing the often complex, unfamiliar tasks of finding and benefitting from our health care is a matter of having enough will and sturdy bootstraps – and that it is our own fault if we don’t succeed.

Don’t get me wrong here: I am pleased with the growing recognition that we have a vital role to play in improving the effectiveness of our health care.  Some new resources are now available to help us act on our own behalf to find safe, high quality care and make the most of it. And I support the well-intentioned efforts of those working to ensure that care will become more responsive to our needs over time.

The glib use of these words and phrases by those in powerful positions in health care signals underlying attitudes and beliefs about us that are inconsistent with what is known about the difficulty of changing health-related behavior and a true disregard for the complexity and magnitude of the challenges we face in finding good care and making the most of it.  These are not simple tasks, and the help we need to do them is neither simple nor cheap.  Throwing a few bits of information and big hunks of risk in our direction and describing us with shiny new words will not do the trick.