Guest Blog: We Are All Health Illiterates: Navigating the Health System in a Sea of Paper and Financial Haze

Jane Sarasohn-Kahn
February 2nd, 2012

Jane Sarasohn-Kahn is a health economist and management consultant serving clients at the intersection of health and technology. Her clients are stakeholders in health, including providers, payors and plans; companies in biopharma, medical devices, financial services, technology and consumer goods; non-profits and NGOs.  She blogs on HEALTHPopuli  and you can follow her on twitter at @healthpopuli. 

“Older patients, caregivers, and family members face growing challenges in understanding and navigating the nation’s increasingly complex healthcare system,” begins a well-articulated column called Why Consumers Struggle to Understand Health Care, in U.S. News & World Report dated January 27, 2012.

Health literacy isn’t just about understanding clinical directions for self-care, such as how to take medications prescribed by a doctor, or how to change a bandage and clean an infected area. Health literacy is also about how to effectively navigate one’s health system. The first graphic is a schematic published in the New Republic in 2009 which illustrates the arcane Trip-Tik that is the U.S. health system. I often use this drawing in presentations when I’m addressing the topic of health literacy in America.

And that skill is in short-supply in the U.S., U.S. News reports. Donald Berwick, recent head of the Centers for Medicare and Medicaid Services, wrote with colleagues in Health Affairs that, “Despite its importance, health literacy has until recently been relegated to the sidelines of healthcare improvement efforts.”

Lack of health literacy results in medical errors, patients presenting themselves to emergency rooms due to prescription drug dosing errors, asthmatic children through the ER revolving door when not regularly inhaling their medications, and overall sub-optimal health outcomes.

Health Populi’s Hot Points: One of my dearest friends is bravely battling multiple myeloma and, so far, so good. His clinical journey with the labyrinthine health system began in early December 2011 – about seven weeks ago.

He is on 23 medications now, administered at home. He was discharged from his inpatient stay without a system to help manage those meds at home. Home care workers get easily confused between names on bottles, some of which are called by their generic names, and some by their esoteric brands. He’s just completed many rounds of radiation, rang the bell in the facility to mark the end of that phase, and will continue a long phase of chemotherapy to be followed by stem cell transplant in a few months.

I spent an hour yesterday, January 29, 2012, at his home, helping his wife (another best friend) reconcile a four-inch-thick pile of paper explanations of benefit forms (EOBs) and bills from various health providers: two hospitals, two imaging centers, two clinical laboratory companies, an orthopedic surgeon, a nephrologist, and other providers whose specialties are hazy to me 24 hours later.

Ironically, the front of each of the few dozen envelopes from the health plan containing the EOBs included the pre-printed phrase, “Be green with Blue,” shown in the graphic. Even if the EOBs came through email, that wouldn’t solve the very un-green challenge of health literacy, and lack of health data integration where all of this should be populating a digital worksheet to help consumers and caregivers manage the countless transactions that get billed in the U.S. health system.

My friend is a hospital administrator with a clinical undergraduate degree and an MBA in health administration. I am a health economist who has consulted with hospitals, physicians, and every kind of stakeholder organization in the health industry for over 20 years. Together, we have at least 50 years of health care system experience.

We morphed the four-inch-pile of bills and EOBs into six bulldog-clipped folders of health financial categories and questions:

  1. EOBs correctly reconciled to patient bills from health providers
  2. EOBs without provider bills
  3. Provider bills without EOBs
  4. EOBs with denials from the health plan
  5. A survey form from a third party administrator for the health plan asking to clarify the context of an inpatient procedure that may or may not be denied
  6. A sixth category of “need more information.”

I won’t even go into the “patient’s responsibility” financial bottom-line (thus far – it’s only 7 weeks into what will be many months of health services from dozens of billing providers).

We are all health illiterates, my girlfriend and I remarked to each other over tea, exhaling over our six piles of prideful organizing. This is just the beginning. Now, to get the data into a Quicken Health spreadsheet…

 

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What’s Engagement Now? Experts Discuss Emerging Challenges

Carol Cronin
February 1st, 2012

This interview with Carol Cronin is the second in a series of brief chats between CFAH president and founder, Jessie Gruman, and health care experts—among them our CFAH Board of Trustees—who have devoted their careers to helping people find good health care and make the most of it.

Carol Cronin has more than 20 years of experience working on health care and aging issues, with a particular interest in consumer health information and Medicare. She is currently Executive Director of the Maryland-based non-profit organization the Informed Patient Institute (IPI), whose mission is to improve the quality of health care by helping the public make more informed decisions about their care.

Making Health Care Quality Information Useful


Gruman:  You and your organization, the Informed Patient Institute, focus on how patients and caregivers view health care quality and how we use information about it for our decisions.  What’s your impression of how the public approaches concerns about the quality of their care today?

Carol Cronin: Most people don’t want to spend a lot of time dealing with health care because it’s not fun.  When they’re plunged into this world, most still assume that they don’t need to worry about the quality of the care they receive, whether it is from a doctor, in a hospital or in a nursing home.  It’s pretty frightening to realize that you do have to care about it, because it means you have to assume the burden. If quality does vary, you have to do the research.  This is hard to deal with when you are upset.

People don’t need this information until they need it.  And then they need it RIGHT AWAY.

Gruman: So they rush to their computer to find it?

Carol Cronin:  Yes, they rush to the computer to learn about their condition.  But no, they don’t look for quality information.  Studies of people’s use of report cards that provide comparative quality of different hospitals and nursing homes show that they don’t use them very much, even today.

There is a growing body of information though that should both convince the public that quality of care really matters and that there is something they can do to ensure that their care – and that of their loved ones – is as good as possible.

For years I have been imagining that we can convince people that the quality of the care they receive from different doctors, hospitals and nursing homes really matters.  If something bad happened in their care, would they then identify it as a quality or safety problem (instead of bad luck or their own fault, for example)? In fact, many people are beginning to notice that bad things do happen – like getting the wrong drug or a hospital-acquired infection. Surveys have found that over 40% of those asked have either personally been in a situation where a medical mistake was made or saw it happen to a friend or relative.  And we’re not talking about cold food or bad parking.

Gruman:  It seems to me that there are some real barriers to us seeking out this kind of information.  One is, as you note, that we resist the idea that health care quality varies.

Carol Cronin: There are generational differences that matter here.  Research shows that the highest users of health information right now are older women. But people who have grown up with the Internet are going to have very different expectations about how to use and choose their health care as they start needing it more.  They’re used to Yelp and Travelocity and Trip Adviser-type sources of information. There are some commercial doctor-rating sites out there now that resemble Yelp, for example.  But so far they aren’t very reliable.  They depend on patient ratings and most physicians haven’t accumulated enough ratings to be useful.

This younger generation will go to the commercial sites unless higher-quality public and non-profit reporting sites figure out how to make themselves known.  Future patients will expect this information. Our challenge is to make sure that good information is out there.

Gruman: What are some of the challenges of improving the usefulness of quality information?

Carol Cronin: We’ve made some progress on this, but there’s still much to do. The earliest report card efforts (pre-internet) were chart- and numbers-based.  In the mid-90s, the Internet made it possible to view complicated information in different ways and to dig deeper for details.  While the Internet has made quality information easier to use and more accessible, there is still a tendency to just transfer old presentation approaches to this new medium.

Important work is going on to change this, though.  Built on research by Shoshanna Sofaer and Judy Hibbard about how comparative information can be presented so that it is most useful to people, there is a focus on, for example, the development of composite measures.  Rather than looking at eight measures of the treatment of heart attacks – many of which wouldn’t mean much to the average person – work is being done to combine them in such a way that they accurately represent the overall quality of heart care, making it easy for the user to know which is better at a glance.

Other improvements deal with how to present the information: showing the best performing organization first, offering the ability to sort based on performance, or using words like “Best” or ”Worst” or other symbols to show differences.

I don’t want to misrepresent the science required to do this: composite measures need to be science-based. But, this is the direction we need to go to make it useful.  Still, it’s fair to say that in this field, we haven’t done a good job with getting people to know about this information.

Gruman: What can be done to make comparable quality information more visible to us when we need it?

Carol Cronin: Rather than make people find a unique site, it’s probably best to go to where people are already going and make sure the information is there. For example, when someone is diagnosed with diabetes, they probably head to the American Diabetes Association site and look at what diabetes is, how it is treated and how they will need to care for themselves.  It would be great to add to the standard diabetes explanations information about “What is quality care for diabetes? Where can I get it – what doctors, hospitals or clinics provide it?”

There are a few snags here, though: it is not clear yet who the public sees as the trusted sponsor for such information.  Nor is it clear what the incentives are for those trusted sites to make this information available.  There are few incentives for site sponsors to include comparative quality information on their sites. The advertisers/funders of the trusted sites are only interested in representing their own spin on quality, not their competitor’s.

Gruman:  You’ve laid out some formidable challenges here…

Carol Cronin: I’m optimistic.  A recent survey by Pew Internet and American Life found that 44 percent of Internet users have looked for information about doctors or other health professionals, and 35 percent have looked for information about hospitals.

Now it’s true that we don’t know what they are actually looking up about their doctors and hospitals – it’s possible that people are looking at doctors’ and hospitals’ own websites. But both doctors and hospitals now realize that patients are internet savvy.  I maintain that if people knew comparative quality information was available, they would use it.

The trick is how to make this happen.

Gruman: You have started an organization that is working to figure out the trick. Tell me about the Informed Patient Institute (IPI).

Carol Cronin: IPI is an independent non-profit based in Maryland that provides access to credible online information about quality and patient safety for consumers, patients and families.

I started the IPI in 2007 with my colleague Marty Schneider.  We had started a magazine and website called Health Pages in the 90s to provide information about health care to the public and felt there was an opportunity to extend some of the work we did then.

Gruman: What work were you extending?

Carol:  I have followed the field of health care quality rating and report cards for years.  In 2007, AARP funded me to go through every state in the country and systematically look for hospital, doctor and nursing home report cards.  This became the backbone of the IPI database which now contains almost a thousand report cards across many areas.  And we continually monitor for new quality reports and update links.

Our first idea was just to have a place where report cards were cataloged.  Then we decided to take one step further and evaluate the report cards against a set of criteria.  We tell people by state and type of report card which we think are better and why.  We review each report card annually using over 15 criteria. We assign a grade from A-F and write short-sentence reviews about what we like and don’t like about the site.

Gruman: What else is on the site?

Carol Cronin: We then thought: “Well, if people experience a medical error or quality problem in their care, how would they know what to do about it?”

This led us to develop tip sheets like “What Do You Do if You Have a Concern about Quality?”

Gruman:  I would have no idea how or where to report a medical error or quality problem outside the institution in which it occurred.  Does it differ depending on the setting or is there one place to report this kind of thing?

Carol Cronin: You’re right: it varies, depending whether the problem is related to hospital care, nursing home care or the care of a physician.  It also varies by State. So far we have produced this kind of guidance for California, Maine, New York and Pennsylvania and are working on others.

The reporting information is presented in short Q & A format using plain language.  But also offers some detail about what actually happens when such a report is made: what happens behind the scenes of health and licensing boards, what is the timeline and how often are people successful.

Gruman: What else does IPI do?

Carol Cronin: We track policies and laws around transparency and reporting – this information is posted on our site. We did two reports last year.  One is a “state of the art” overview of hospital and physician report cards.  The second one is in anticipation of Health Information Exchanges and answers the question, “What should the new health insurance exchange websites look like to be useful to consumers?”

Gruman:  How do you see the future of this field?

Carol Cronin: I think there will come a time when people routinely check on the quality of the health organizations and professionals they use.  We’ll move from a “trust completely” culture to a “trust, but verify” one.  IPI plans to give people access to the tools to help make that happen.

Related Links:

Interviews with CFAH’s Ziff Fellows on the challenges of patient engagement:

 

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Tweetchat with Jessie Gruman Today at 2PM on Overtesting and Overtreating in Health Care

CFAH Staff
February 1st, 2012

Join @jessiegruman, Otis Brawley MD, Executive VP of ACS and other experts on Twitter today at 2PM with ABC’s @DrRichardBesser for a Tweetchat about overtesting and overtreating in health care.  Use hash tag #abcdrbchat.

Post TweetChat Follow-up:  View the full Tweetchat on Twitter (#abcdrbchat) OR read the transcript here: http://storify.com/carrie_gann/the-trouble-with-over-screening.

 

 

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Guest Blog: Super Bowl Sanitation: “Washed Up” Giants Outpoint Docs

Michael Millenson
January 31st, 2012

Michael L. Millenson, president of Health Quality Advisors LLC, is a nationally recognized expert on improving the quality of the American health care. He is the author of the book “Demanding Medical Excellence: Doctors and Accountability in the Information Age,” and he holds an adjunct appointment as the Mervin Shalowitz, M.D. Visiting Scholar at Northwestern University’s Kellogg School of Management.

Is the New York Giants bathroom more sanitary than your hospital room? Could be. And that player cleanliness may even have helped send the team to the Super Bowl.

Freakonomics co-author and self-confessed germophobe Stephen Dubner, working on a Football Freakonomics segment for the National Football League, noticed that every urinal in the football Giants’ bathroom had a plastic pump bottle of hand sanitizer perched on top – a phenomenon he promptly documented photographically.

Health care-associated infections cause more than 98,000 patient deaths every year. Yet as I’ve noted previously, the guy who just used the toilet at the train station is way more likely to have clean hands than the guy walking up to your bed – or into the operating room – at the local hospital. That’s based on my comparing hospital sanitation with the results of a surreptitious survey by researchers from Harris Interactive of more than 6,000 adults using restrooms at six high-volume sites across the country.

At New York City’s Grand Central Station and Penn Station, only 80 percent of men and women washed up. However, even Atlanta’s Turner Field, where just 65 percent of men washed their hands, looked positively sterile compared to hospitals. The Centers for Disease Control and Prevention found that baseline compliance for hand hygiene was just 26 percent in intensive care units and 36 percent in non-ICUs.

This past November, suburban New York’s North Shore University Hospital reported it had raised the hand hygiene rate in its medical ICU from a truly dismal 6.5 percent to more than 80 percent by using a video monitoring system originally developed to ensure hygienic practices at meatpacking plants. Adam Aaronson, founder of Arrowsight, the company that made the system, expanded into health care after his mother and sister were both victims of serious infections while hospitalized.

Noted a New York Times blog: “What makes the system function is not the videotaping alone – it’s the feedback.  The nurse manager gets an e-mail message three hours into the shift with detailed information about hand hygiene rates, and again at the end.” There are also electronic signs that “are a constant presence in both the surgical and medical ICUs,” providing feedback to doctors and nurses what the handwashing rate was for that shift and setting up a “positive competition” between teams.

On a similar psychological theme, behavioral psychologists at the University of Pennsylvania posted different signs next to a hospital’s soap and hand-sanitizing gel dispensers to see what wording would have the greatest impact. As journalist Wray Herbert relates, one sign read: “Hand hygiene prevents you from catching diseases.” Another read: “Hand hygiene prevents patients from catching diseases.” The third, a control sign, read: “Gel in, wash out.” After two weeks, doctors and nurses used significantly more soap and gel when the signs emphasized patient consequences, but not when the signs emphasized personal risk and benefit. Writes Herbert: “This would suggest that although doctors and nurses may believe that they themselves are invulnerable, they don’t make the same assumption about their patients.”

Kind of like the thinking behind those “Loose lips sink ships” admonitions to soldiers and civilians during World War II.

For Dubner, it’s clear that a strategy of simply “educating” doctors about better sanitation has failed, as he laid out in a Freakonomics podcast called, “What Do Hand-Washing and Financial Illiteracy Have in Common?”

And while there appear to be no video cameras trained on the Giants’ urinals – or at least none noticed by Dubner – the players did have a professional motivation to make liberal use of the germ-fighting gel. That’s because “washed up” players may have been a factor in helping catapult the Giants to the Super Bowl in the first place.

When hand sanitizers were placed in dorms at the University of Colorado, a study on infection control found that overall illness rate dropped by 20 percent and missed school days by 43 percent. Presumably, trying to keep healthy bodies on the field was why Giants management gave the hand sanitizers such a prominent position.

Note: this post first appeared on Forbes.com on January 30, 2012.

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