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. (more…)

By Hope Ditto

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!

John King moderated the GOP debate on Thursday night during which the Republican presidential candidates Mitt Romney, Newt Gingrich, Rick Santorum and Rep. Ron Paul debated the health law and abortion. To view Kaiser Health New’s coverage click here.

Marc Siegel wrote a column on January 18th in USA Today that discussed why doctors are unsure of  “Obamacare”. We at Disruptive Women believe it is important for all sides to be presented, so in contrast to the information in our post yesterday on the Jonathan Gruber event we hosted this week, take a look at this column.

Gruber, director of the Health Care Program at the National Bureau of Economic Research, explains the Affordable Care Act (ACA) in comic book format

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…

January’s Man of the Month, Dr. Jonathan Gruber will be speaking tonight at our event on health care reform. Dr. Gruber is a Professor of Economics at the Massachusetts Institute of Technology, where he has taught since 1992.  He is also the Director of the Health Care Program at the National Bureau of Economic Research, where he is a Research Associate.  He is a co-editor of the Journal of Public Economics, and an Associate Editor of the Journal of Health Economics.

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

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

The following was originally posted on NPR’s SHOTS on January 10th. On January 17th Disruptive Women in Health Care will be hosting a Health Reform Discussion with MIT Health Economist Dr. Jonathan Gruber and will be featuring his new book: Health Care Reform: What It Is, Why It’s Necessary, How It Works.

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

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

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

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

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

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

On December 6th, the Disruptive Women in Health Care® blog launched a new initiative, Health in Place™ (HIP), aimed at reframing how and where people of all ages, and across the wellness span, maintain their health, broadly defined. With an advisory board comprised of experts from within and outside health care, HIP hopes to develop an incubator for innovation to address health challenges in unconventional ways and capitalize on the potential for technology to reshape how and where we receive, and maintain health.

“If we are going to prevent the projected escalation in chronic illness, which threatens to overwhelm our health care system, we need to develop new and better ways to elevate the health of our fellow citizens. The good news is that the next frontier in consumer health and well-being is right on our doorstep – literally,” said Robin Strongin, Creator of the Disruptive Women in Health Care blog and HIP. “We crafted this new initiative to advance the next wave in consumer health and well-being, bringing the best of health care to the places where we spend virtually every hour of every day.” (more…)

January 17, 2012
5:30—7:30PM
1750 K Street NW—10^th Floor

The Disruptive Women in Health Care Blog
Proudly Presents

A Health Reform Discussion
By
MIT Health Economist Dr. Jonathan Gruber

Featuring his new book:
Health Care Reform:
What It Is, Why It’s Necessary, How It Works

Please join us for a discussion, Q&A session, and book signing

There is no cost to attend.  All guests will receive a copy of Dr. Gruber’s book

RSVP by Friday, January 13, 2012

Hosted by

By Hope Ditto

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. (more…)

By Jane Sarasohn Kahn. The passage of health reform in the U.S. has not enhanced peoples’ confidence in the American health system. In fact, U.S. health consumers’ high confidence level in the future of employer-sponsored health benefits has eroded over the past ten years, according to the Employee Benefit Research Institute‘s (EBRI) 2011 Health Confidence Survey: Most Americans Unfamiliar with Key Aspect of Health Reform.

Most people are dissatisfied with the U.S. health system overall, with 27% of U.S. adults rating the system as “poor” and 29% giving a rating of “fair.”

High costs may be at the root of peoples’ dissatisfaction with the U.S. health system. Only 18% of people are satisfied with the cost of health insurance; only 15% satisfied with the cost of health services not covered by insurance.

EBRI looked into peoples’ health-consumer behaviors, detailed in the chart. Most people who have visited doctors ask them to explain why a test is needed, as well as inquire about risks of treatments and medications and their success rates. Nearly one-half of people ask about less costly treatment options often or always.

Consumers also adjust their health care utilization when facing higher health care costs:

• 74% of U.S. adults try to take better care of themselves
• 69% choose generic drugs when available
• 64% talk to the doctor more carefully about treatment options and costs
• 59% go to the doctor only for more serious conditions or symptoms
• 44% delay going to the doctor
• 36% switch to over-the-counter (OTC) drugs
• 34% look for cheaper health insurance
• 31% look for cheaper health providers
• 25% skip medication doses or don’t fill prescriptions.

Health care costs are eating into peoples’ savings contributions: 56% of people say they have decreased contributions to other savings due to health cost increases, and 33% have difficulty paying for other bills beyond health care.

The Health Confidence Survey interviewed 1,001 U.S. adults over age 21 in May and June 2011 via telephone. (more…)

By Mary Grealy. Yesterday, USA Today devoted its front page to a topic many of us have been discussing intensely for some time – how to address Medicare’s escalating costs. 

The newspaper listed five ways to “squeeze” Medicare spending and then discussed the political arguments for and against each.  Some, such as gradually raising the Medicare eligibility age from 65 to 67 and requiring higher-income beneficiaries to pay full premiums for their Medicare Part B (physician services) and Part D (prescription drug) coverage are recommendations that the Healthcare Leadership Council has made to the congressional deficit reduction “super committee.”

But, in a number of ways, the USA Today article missed the mark:

In discussing cutbacks to Medicare providers, including physicians, hospitals and pharmaceutical companies, the newspaper expanded on the likelihood that those health sectors would strenuously argue against any cuts, but there was no reporting on the impact those reductions would have upon beneficiaries.

This is a pet peeve of mine, as I’ve noted previously.  Too often, both politicians and commentators speak of the value of cutting providers instead of patients, obscuring the fact that reduced payments to providers has an impact on both the accessibility and quality of healthcare.  If, as the Obama Administration has proposed, pharmaceutical companies are required to send over $100 billion in rebates back to the government, can there be any other outcome besides higher prices for consumers and less money available for research and development of new innovative medicines? (more…)

By Robin Strongin.  Three years ago, in September 2008, Disruptive Women in Health Care launched with an exciting program at the National Press Club (take a look at our media page to see what we had to say at the time.)

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.

By Jane Sarasohn-Kahn. Home foreclosures negatively influence health in several dimensions: they cause stress on the lives of the home’s residents, including children, driving mental and physical illness; they impact neighbors who worry that home values will fall in their community; and, they can motivate unhealthy behaviors, such as drinking and foregoing medical treatment such as seeing the doctor and filling needed prescriptions for drugs treating chronic conditions.

In Is the Foreclosure Crisis Making Us Sick? published by the National Bureau of Economic Research in August 2011, Janet Currie and Erdal Tekin find that the number of foreclosures in a community is associated with increases in medical visits for mental health (anxiety and suicide attempts), preventable conditions such as hypertension, and a long list of stress-related diseases.

Furthermore, more foreclosures in an area are most harmful on people age 20 to 64, and disproportionately impact African-Americans and Hispanics compared to whites.

The map shows the “heat index” for areas with the most home foreclosures: the redder, the higher the foreclosure rates in the state. Currie and Tekin focused on four of the hardest-hit foreclosure states: Arizona, California, Florida and New Jersey. They combined foreclosure data from 2005 to 2009 with data on ER visits and hospital discharges at the zip code level. (more…)

By Hope Ditto. Most of the country is sweltering its way through this week’s heat wave, but there is one thing here in DC rising faster than the mercury in our thermometers – tensions on the Hill as the debt ceiling stalemate continues. Whispers [well, tweeted whispers] of default “what ifs” abound here in the nation’s capital as lawmakers continue to play a high-stakes game of chicken through day after day of floor debates, committee hearings and negotiating sessions. With interest rates, Social Security payments and America’s credit score dangling in the balance, and the clock ticking towards the Aug. 2 deadline, the air is even thicker with panic than it is with humidity (though my frizzy hair would say otherwise). (more…)