Jessie C. Gruman, PhD is president and founder of the non-profit organization Center for Advancing Health. Her experiences as a patient — having been diagnosed with five life threatening illnesses — informs her perspective as an author, advocate, and lead contributor to the Prepared Patient Forum blog. Her most recent book, AfterShock, helps patients navigate their way through the health care system following a serious or life-threatening diagnosis. You can follow her on Twitter at @JessieGruman. More…

Book review: Health Services for Cancer Survivors: Practice, Policy and Research

The day I completed treatment for Hodgkin Disease in 1974, my oncologist shook my hand, wished me luck and said good-bye.

“But how will I know if the cancer comes back?” I asked.

“Oh, you’ll know. You won’t feel well.”

And that was it. I was on my own.

He was wrong about not feeling well. Since then I have received three additional cancer-related diagnoses: two discovered as part of regular screening and one through the vigilance of a physician.  Each time I felt fine until the moment I got the news. But he was also wrong to say good-bye without any mention of ongoing follow-up or even a reminder to check in with my primary care doctor.

Much has been learned since 1974.  Research has produced useful evidence about the long-term implications and impact of the diagnosis and treatment on cancer survivors. That research, combined with the growing survivors population (currently 12 million), forms the basis of the argument that people who have been treated for cancer are at considerable risk for recurrence, new cancers, late effects of treatment and related declines in physical and psychosocial functioning. Many of these can be prevented, treated and managed should appropriate health care services become available.[i]  

This argument has been made – and evidence arrayed to support it — in a number of reports by the Institute of Medicine, the most prominent of which is From Cancer Patient to Cancer Survivor: Lost in Transition.  The recent book Health Services for Cancer Survivors: Practice, Policy and Research[ii] revisits the IOM report’s basic argument and updates it by providing a detailed snapshot of the state of the science and art of providing such care.

This book is a collection of well-sourced individual chapters that are both comprehensive and thoughtful. Reading straight through (a strategy not recommended for any edited collection!) sparked these observations:

People who have been treated for cancer need special health care services for the balance of their lives. The reason my original oncologist didn’t talk about risks for recurrence or long-term effects of treatment was because very little was known about them. In 1974 I was part of a clinical trial that today produces a stream of evidence that influences treatment protocols and uncovers new risks and late effects of treatment as trial participants age. Registries and trials generate similar volumes of information about risk and late effects for many cancers. 

This growing body of information – when represented as guidelines and standards — constitutes the evidence base for special health care services for cancer survivors.

Implementing health care services for cancer survivors appears to be hellishly complicated. Such care requires an approach that is novel for many primary care and specialty clinicians (i.e., planned, proactive monitoring and treatment over time vs. reacting to disease and symptoms).  It requires expertise in a broad range of issues: managing symptoms, regular checking for effects on multiple organ systems and addressing physical rehabilitation and psychosocial functioning. And of course, we survivors differ wildly in the complexity of our needs, which may ebb and flow throughout our lives. 

What do clinicians need to be able to deliver care to the diverse and growing group of people who have been treated for cancer: Training? Time? Additional staff? Guidelines? Reimbursement? Quality measures? Administrative support? All these and more.  At a time when health care services are increasingly constrained, the models of survivorship care presented in this book are generous…aspirational, perhaps?

The question of who will provide care to cancer survivors remains open. Clinicians must believe that special care for cancer survivors is important and learn how to provide it. The debate about whether primary care clinicians or oncologists are better suited or more willing to provide such care is described in multiple chapters. To re-cap: surveys have found that many primary care clinicians have doubts about their ability to provide this kind of care. Those doubts are shared by many oncologists, a good number of whom are not interested in providing care to survivors. Beyond this, however, the predicted shortage of both primary care clinicians and oncologists, documented in the book’s chapter on building the workforce  to provide this care, raises doubts about the availability of clinicians to care for the majority of cancer survivors in the future.

The development of a treatment summary and survivorship care plan for each individual at the end of treatment is necessary to guide ongoing care. We need to know how to care for ourselves and exactly what care we should seek when we are through with active treatment. This is particularly important because many of us will be cobbling our care together ourselves, given our propensity to get “lost in transition” when our treatment comes to an end. To date, there is only modest uptake by oncologists to complete treatment summaries, despite quality measures that reinforce doing so.  Survivorship care plans enjoy similar modest popularity.  Both are necessary if we are to act independently on our own behalf.

The National Coalition of Cancer Survivorship, the American Society of Clinical Oncologists the Lance Armstrong Foundation and others have developed web- and print-based templates for care plans and each has active outreach efforts to make sure people know they need a survivorship care plan, that they complete the plan in collaboration with their oncologist and that they follow it. Alas, only a tiny percentage of cancer survivors currently have one.

Recent health care reform initiatives include provisions that may make it more likely that cancer survivors can get the health care services they need.  Better access to insurance coverage, the prohibition of rescissions (cancellations), a ban on lifetime and some annual coverage limits, coverage of dependents through age 26, all part of the Affordable Care Act, remove some barriers to ongoing care for cancer survivors. Federal investment in the implementation of Electronic Health Records should also make it easier to locate treatment records.

Where the IOM’s Lost in Transition report defined the terrain of health care for cancer survivors, Health Services for Cancer Survivors: Practice, Policy and Research provides a map.  Upon finishing the book, however, this thought still nags at me:

If special care for cancer survivors is the price of successful treatment, there seems to be a singular unwillingness to pay it.

While the diagnosis and treatment of cancer have vastly improved since my oncologist bid me farewell in 1974 with a handshake, too many Americans receive essentially the same when they finish treatment today.  Primary care and specialty clinicians have their own unique reasons to eschew providing care for cancer survivors.  Federal research dollars devoted to exploring post-treatment care for cancer survivors remain paltry. Health plans balk at paying for specialized screening and psychosocial services. And many of us finish treatment and just walk away from our whole cancer experience or we stick with the monitoring for five years and then disappear if those years have been uneventful.

Those of us who have been treated for cancer and are alive today are the fortunate beneficiaries of the U.S. taxpayers’ investment towards preventing and curing cancer.  Whether and how we and our clinicians monitor the risks that accrue to us, address the late effects of treatment we experience, and participate in the treatments of our second, third and fourth cancers are critical indicators of progress in that war.  Appropriate, evidence-based health care for all cancer survivors is the only way we will fully capture the value of our investment.

Trudy Lieberman

Labels describing key features of health insurance policies will become a reality this fall fulfilling a provision of the health reform law that called for more disclosure and transparency. The idea was to copy the labeling for food products that disclose nutritional information.  No more buying the proverbial pig in the poke.

Few would quarrel with the need for common, simple language for insurance policies, and the proposed labels do clarify some confusing insurance terms and outline some basic coverage facts.  The four-page double sided disclosure form now required tells shoppers the amount of the deductible and what health care services do not count toward reaching it.  It reveals the maximum you will pay out-of-pocket for health services and tells you that amount might be higher if you use out-of-network doctors.  These are good things to know.  

Disclosures will also give the amount of coinsurance—that portion of a bill you have to pay yourself.   That, too, is useful because coinsurance is becoming more important than copays—the flat amount like $25 or $35 you pay for a given service.  Helen Darling, who heads the National Business Group on Health, and who knows what employers are up to when they select coverage for their workers, says coinsurance is a more subtle way of shifting medical costs to consumers.   Subtlety calls for transparency. 

But the labels for health insurance coverage will not be like shopping for canned peas.  When you pick up a can of vegetables, you know the price so you can compare Del Monte’s brand with the cheaper supermarket label to see if Del Monte offers better value.  That will not be the case with insurance policies.  Even though the proposed rules issued months ago by the Department of Health and Human Services called for premium disclosure, officials decided that premium information was not necessary after all.  Insurers and employers had complained that giving premium information alongside policy details would be too difficult.  Maybe it would have just revealed too much.

In announcing the new labeling rules, Steve Larson, an HHS official, said: “People have premium information.  They will have that.”  Larson explained that the goal of these disclosures “was to focus on coverage, benefits and how they interact.”  But coverage and benefits interact with the price, and no insurance company would design a policy without considering the premium.  So without knowing the premium you still may be buying the pig in the poke.   A policy with coinsurance of 40 or 50 percent might carry a cheaper monthly premium, but consumers need to know if paying less each month is worth the risk of having to pay more on their own if they get sick.   

Yes, consumers can find out the premium.  Its likely employers will include it with the summary of the coverages they give their workers.  But people buying on their own—and there will be millions more of them when health reform becomes fully effective—will have to call the insurers, making the shopping task more complicated.

There are three problems with these new labels:

Problem #1: Consumers will not be able to compare the price and features of health insurance policies without a lot of extra work on their part.

Furthermore, the rules do not require insurers or employers to provide paper copies of the disclosures.  Someone shopping around may compare five or six choices and doing that on a computer can be taxing.  Employers and insurance companies can make disclosures electronically for employees already enrolled in group health plans, for employees who are not already enrolled in these plans and for individuals who are “purchasing” insurance.  These folks are supposed to get an e-mail or postcard advising them they can ask for a paper copy.   But individuals simply “shopping” for insurance will have to use the government website www.healthcare.gov to retrieve the disclosures.  As an added hurdle, employees already in a group health plan must give consent for their disclosures to be provided electronically.  

Problem #2:  Getting access to paper and/or electronic copies of these new insurance disclosure forms will vary depending on whether you are getting individual health insurance or employer-based coverage.  More work for consumers.

This is all sounding a little nutty, and the extra steps may not make shopping easier.  There will still be fine print.  “This is only a summary,” says the disclosure form, and it advises shoppers to consult the policy itself or the plan document for more details.  Too many consumers will simply buy whatever seems easiest or what some agent recommends.   And while the disclosures offer examples of what the costs might be for having a baby and treating diabetics, the last page of the document advises “you can’t use the examples to estimate costs for an actual condition.”  I guess the point is to show the price of care does vary, but you still won’t know what you will have to pay until after you get sick and have already received needed care.

Problem #3:  Without full disclosure and easy access to the price of insurance and health care services, we have bought a pig, a live one, but have no way to control.

Related Links:

• Health Care’s Curtain of Secrecy - Trudy Lieberman
• Health Insurance, Meet the Jolly Green Giant - Trudy Lieberman
• How much does it Cost to Have a Baby? – Kenny Lin
• Price Tags and Haggling in an Exotic Market – Daniela Carusi

Douglas Kamerow, immediate past CFAH Board Chair, is a chief scientist at the non-partisan research institute RTI International and Professor of Clinical Family Medicine at Georgetown University. His new book is Dissecting American Health Care.

Time, Tools and Temperament- Requirements for Engagement

Gruman:  As a practicing family physician, what do you see as the challenges to people’s active engagement in their health and health care?

Douglas Kamerow:  Three of the things that optimal patient engagement depends on are TIME, TOOLS and TEMPERAMENT.  Clinicians and patients experience each of these differently, but they are central to us working together to get the best possible outcomes.

Gruman: OK.  Start with TIME.  What do you mean?  Whose time?  Time for what?

Douglas Kamerow: For clinicians, time equals money.  Clinicians need to be paid in such a way that we are encouraged — not penalized — for spending time discussing what an individual might do to prevent and manage disease. Similarly, patients need to devote the time necessary to becoming and staying actively engaged.

Gruman:  What specifically do you think we need time to discuss?

Douglas Kamerow: If clinicians are in a fee-for-service setting, we don’t have enough time to talk with our patients about all the preventive tests and behaviors they should be doing, in addition to working with them to solve the problem that brought them to the clinic.

Over and above that, however, I think we (and our team members, if we have them) need time to talk with our patients about what they need to do to get the most from their health care.  We clinicians just assume that everyone knows what we know about getting good care – how to keep track of lab tests, what results mean, what step comes next, and so on – and we forget that patients don’t know. 

Who gives lessons in being an engaged patient? It’s pretty clear that most people aren’t going to go to “patient college” to learn this. Though they can find lots of disease-related information online, that really doesn’t address what an individual must do to make the best possible use of services and drugs and information and technology to address his or her unique needs.

This kind of personalized collaborative planning – something that is most effectively done with a primary care clinician (or team member) and a patient (sometimes with a family member or caregiver) — is critical to people engaging in their care.  And there is often no time for this. No one will pay clinicians to do it.

Patients also have to see this as sufficiently important to be willing to devote time to explore with their clinician how to best participate in their care and then commit to spending the time necessary to do it.  There are different incentives for patients to engage, with better outcomes primary among them.

Gruman: Your second requirement is TOOLS.  What do you mean?

Douglas Kamerow:  By tools, I am referring specifically to electronic record-keeping approaches that allow patients and clinicians to keep track of an individual’s health care history.  A tremendous amount of attention and money is currently aimed at getting electronic health records (EHRs) up and running. There are two aspects to this: patient access to the EHRs and true inclusiveness in the EHRs.

Eventually, many of these systems will provide a patient portal for people to view parts of their medical record.  Right now, however, unless you are in a system like the VA or are a member of Kaiser Permanente or Group Health Cooperative, you probably have little access to your health records: when did you get your last tetanus shot? When did you stop taking that beta-blocker?  Most people are out of luck: they either keep records themselves on paper or are at the mercy of a paper record and a medical assistant willing to plow through it.

As for inclusiveness, closed health care systems like Kaiser and the VA have a huge stake in decreasing duplication and errors. They already work hard to make sure that every specialist note, every x-ray result, and every lab test is included in their EHRs. No such incentives or systems exist for most clinicians, who are paid by the services provided.  So while there is slow movement toward an interoperable, transportable EHR that contains meaningful information for both patients and clinicians, it is not going to be a reality for most people any time soon.  In the meantime, responsibility for keeping track of which information can be found in which clinician’s chart falls to the patient.

Gruman: And the third requirement: TEMPERAMENT?

Douglas Kamerow: By temperament, I’m referring to attitude and interest in an individual’s engagement in his or her care on the part of both the patient and the clinician.  Both have to view this as important: patients have to know that they can’t be passive and get good outcomes; they need to know what’s going on and why, how to keep track and assert themselves and what they have to do to get better. And clinicians have to understand that they just can’t write orders, that their role is to describe, explain, explore and advise, recognizing that people vary in their interest in participating in their care, based on education, language, culture, and health status. 

The mutual commitment to figuring out what’s wrong and solving it is critical. Clinicians need a predisposition to work with their patients to help them understand what they think is needed.  Say a patient has hypertension. The patient needs to know what’s in it for them in the long and short-term in lowering their blood pressure.  The clinician needs communication skills and interest so the patient will find the discussion both useful and motivating. Clinicians have the power to put the tools of medicine – drugs, devices, knowledge, procedures – in the service of what needs to be done, but they need to be clear about their reasoning –“because it can help you.” We clinicians can’t just give directives, i.e., “Lose weight!” “Take these pills!” We have to connect cause to effect and make sure our patients understand their role in increasing the likelihood of the best possible outcome.

Gruman:  These three requirements seem to be closely related.

Douglas Kamerow:  You’re right.  They are.  None of them will take place without specific incentives for both patients and clinicians to change the way they interact.  For clinicians, the incentives are two-fold: payment for their time to work with their patients to understand their role and make plans, and the realization that their interventions are more effective when patients participate actively in their care.  And the patients’ incentive is the knowledge that they are doing everything possible to get better or stay healthy.

Each has a role to play in the service of an individual’s health.  One way to improve and maintain health is trying to make sure that the patient is engaged. It doesn’t work unless both sides play their roles – learn, teach, facilitate, and DO.

We need time, tools and temperament to do this.

Related Links:

• “Patient Engagement!” Our Skin is in the Game – Jessie Gruman

What’s Engagement Now? Experts Discuss Emerging Challenges series:

• Making Health Care Quality Information Useful: Carol Cronin
• The Growing Complexity and Prevalence of Caregiving: Gail Hunt

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

• Trudy Lieberman,  journalist for more than 40 years and contributing editor of the Columbia Journalism Review
• Dale Shaller, Principal of Shaller Consulting Group
• Connie Davis, geriatric nurse practitioner and health care consultant
• Molly Mettler, Senior Vice President for Healthwise
• David Sobel, Medical Director of Patient Education and Health Promotion for The Permanente Medical Group
• Kate Lorig, Professor at the Stanford University School of Medicine and Director of the Stanford Patient Education Research Center
• Shoshanna Sofaer, Robert P. Luciano Professor of Health Care Policy at the School of Public Affairs, Baruch College
• Judith Hibbard, Professor of Health Policy at University of Oregon & lead author of the Patient Activation Measure (PAM)
• Carol Alter, Director of Policy and Community Outreach and an Associate Professor in the Georgetown University Department of Psychiatry

Trudy Lieberman

The health care establishment has never been eager to disclose information about itself—not its mistakes, not its quality measures, and certainly not its prices.  The result is that patients—now called customers—receive medical services at a price and quality they know little or nothing about.  That’s not to say the establishment doesn’t like to promote itself.  Every other day a press release arrives from some doctor praising a new treatment or procedure that, of course, he or she can do.  And who hasn’t seen TV commercials for hospitals that try to reel in patients for lucrative services like bariatric surgery and cancer care?

But resistance from the medical community is fierce when it comes to revealing prices for those treatments.  In Florida, public interest advocates worked this year to get a bill through the Florida legislature that would have required providers to post in their reception areas prices of fifty of the most commonly used services.  Florida already has a requirement for urgent care centers to post prices, and the proposed law would have simply expanded the requirement to ambulatory care centers, imaging businesses and doctors’ offices.  The requirement for the doctors was dropped, however, as legislation moved along.  The general counsel for the Florida Medical Association claimed its members were all for transparency; they just didn’t want the government to tell them how to do it.  “Next thing you know they’re going to say it has to be neon or include pictures,” he told Kaiser Health News.

The Florida bill aimed at telling patients the deep secrets of physician pricing.  It would have made providers disclose prices to patients who were using their services out of an insurer’s network, and it would have limited balance billing—the amount doctors can charge after an insurer pays its portion of a claim.  Doctors can pretty much charge what they want to out-of-network patients who may be shopping for a particular surgeon, for example.  Whether the health plan’s contribution for an out-of-network charge is regulated, however, varies among states.

For patients who stay in the network, doctors are bound to accept an insurer’s negotiated rate, which may be less than they would prefer.  Balance billing hurts consumers’ pocketbooks as insurance coverage increasingly calls for them to pay a much larger portion of their medical expenses.  But restricting how much doctors can balance bill limits their income, and they’ve never liked that idea.

Whether hordes of customers/patients will use this price information is problematic.  It’s hard enough finding a doctor these days—any doctor, cheap or expensive—who will take your insurance and want to treat whatever ails you.  One New York doctor just told me he would not take diabetic patients who are on Medicare.  They were complicated patients to care for, he said, and he could make more money treating twenty-two year-olds with better-paying insurance and fewer medical problems.  So when you finally find a doctor to treat you, are you really going to haggle over price?  To think people in urgent need of care will shop the urgent care centers in Florida looking for the cheapest practitioner to diagnose a baby’s ear infection in the middle of the night is, well, silly.

Several states require posting for various services, but many of those efforts have not been rousing successes.  For example, since 2003, Maine has required hospitals to post prices for twenty-five services if people ask for them.  But consumers have not used them, says Joe Ditre, director of a Maine advocacy group Consumers for Affordable Health Care.  They were too hard to obtain and understand.   Maine passed another law to fix that problem, but the state has yet to implement it.  “Hospitals and specialty providers are putting enormous pressure on the agencies slowing down the progress significantly,” Ditre said.

As readers of this blog site know, I’m skeptical that consumer information about health services will make the health care market more competitive, more honest, or less dysfunctional.   Health care simply does not work like other markets.  Hospitals, for instance, compete on getting more patients through the door, not on the quality of care they deliver.  Still, transparency does matter even if it doesn’t change a patient’s medical buying patterns.  Knowing the general price levels—and they are way high in America—might help the public understand and ultimately support the need for serious cost containment.

Maybe that’s why the health care establishment has been afraid of posting prices all along.

Related Links:

• How the Cost of Health Care Creeps Up and Up – Trudy Lieberman
• How Much Does it Cost to Have a Baby? – Kenny Lin
• How Code Creep Boosts the Price of Health Care – Trudy Lieberman
• Price Tags and Haggling in an Exotic Market – Daniela Carusi

Conversation Continues

Recently, celebrity chef Paula Deen, famous for her high-fat and high-sugar versions of Southern-style cooking, announced that she has diabetes and will be a spokesperson for the diabetes drug Victoza.  Her announcement drew fire from those who felt it was opportunistic; that she ignored or glossed-over the fact that the very foods she championed on her cooking show were the type people who are at risk of diabetes should avoid.  Frank Bruni, former NYTimes food critic, (quoted in title) pointed out that Deen isn’t the only celebrity chef “exhorting people to pig out” (though when not in front of a camera many admit to being cautious eaters).

While some thought that the criticism lobbed Deen’s way was unfair, her announcement did get people discussing the increasing rates of diabetes.  In her article, Why Is Type 1 Diabetes Rising Worldwide?, journalist Maryn McKenna explores a diabetes conundrum.  Type 2 diabetes is linked to obesity, so it makes logical sense with rising obesity comes an increase in type 2 diabetes (also known as adult-onset diabetes).  But what about Type 1?  McKenna points out that researchers are unsure about why type 1, an autoimmune disorder typically diagnosed in children, is similarly on the rise.

This means many more people will have to learn how to manage their blood sugar, a complex task that for many involves daily injections of insulin and glucose monitoring.  Completing these tasks and maintaining appropriate blood glucose levels can be especially challenging for children with type 1 diabetes, as Michelle Katz and Lori Laffel point out in their piece, It Takes A Village: Caring for Children with Diabetes.  “Families need frequent support and extensive education in diabetes self-management in order to have the knowledge and skills necessary to successfully manage the condition…technologies offer only a form of imperfect insulin replacement, as remarkable rigor is required to orchestrate the changing treatment demands of fluctuating glucose levels in an active, growing child.”

Alleviating the toll of diabetes, which can include higher risks for kidney disease, blindness, stroke and amputation, begins with timely diagnosis and help.  The National Institutes of Health recently released a fact sheet detailing how a common test for blood glucose levels, called the A1C test, can be used to diagnose type 2 diabetes and prediabetes.  Online resources and chats with people who have diabetes can be helpful for some: Amy Tenderich of DiabetesMine and TuDiabetes are two highly respected sites.  In addition, recent HBNS stories covering diabetes research studies can be found here.

Related Links:

• You Can Do This – Prepared Patient First Person
• Small Steps: Adapting to New Technology for Better Health – Prepared Patient First Person
• Staying a Step Ahead of Diabetes – Patient Perspectives

Prepared Patient, is created by the Health Behavior News Service (HBNS), part of the Center for Advancing Health. This monthly series helps Americans participate more fully in their health and health care. For more issues of the Prepared Patient series, visit the archives.
Written By: Lisa Esposito, Updated (Feb 2012) By: Amy Sutton, Contributing Writer & HBNS Staff

This updated Prepared Patient feature offers advice for young people who are just starting out in managing their health care, including information on important provisions from the Affordable Care Act.

Your parents still might be willing to do your laundry, but if you’re over 18, they can’t make your medical decisions. Are you ready to navigate the adult health care system?

Len Ward, a Louisville, Ky., freelance writer in his late 20s, was born with a rare condition called endocardial cushion defect. Fortunately, he was symptom-free since his second open-heart surgery at 8 years old into young adulthood.

“I have a cardiologist,” Ward said. “He’s a children’s cardiologist but he’s well-versed in my condition. He’s the only one who knows that much about it.  For the foreseeable future I will be sticking with these doctors.”

All too often, the health care system fails to keep up when children with chronic conditions reach adulthood, said Patience White, M.D., a professor of medicine and pediatrics at the George Washington University School of Medicine and Health Sciences.

“It’s not unusual” for a young adult with a medical condition to be without a medical home or age-appropriate health care, said White, who is chief public health officer of the Arthritis Foundation. Moreover, “the bulk of young American adults do not interface with the health care system during their adult years.”

So what’s wrong with that?

You Have Adult Health Needs

Emerging adults “may not have heart disease but they have risky behaviors,” said Angela Diaz, M.D., program and research director of the Mount Sinai Adolescent Health Center. Young adulthood is a time for “safe experimentation,” but in fact, common not-so-safe behaviors include unprotected sex, substance abuse, violence and preventable injuries.

Getting to know the health care system with regular screenings and checkups can pick up problems that would otherwise progress unrecognized and untreated.

The Agency for Healthcare Research and Quality says that check-ups should include blood pressure and BMI monitoring along with a comprehensive exam with cholesterol tests. Providers can make sure tattoos or piercing sites are intact and infection-free, offer counseling on alcohol misuse and screen for depressive disorders.

The Centers for Disease Control and Prevention also recommend regular STD screenings, including HIV screening, for sexually active young adults. Sexually active women 25 or younger should receive regular screening for the STDs chlamydia and gonorrhea because women in this age group have the highest rates of infection. The CDC also recommends that women should receive regular Pap smears to check for changes that might suggest cervical cancer starting at age 21 or within 3 years of the first time they have sex.

Think shots are just for kids? Think again. Immunizations, such as those for human papillomavirus (HPV), meningococcal disease and hepatitis A and B, also play an important role in protecting the health of young adults.

In addition to shots and checkups, young adults might need to get their lifestyle in sync to protect their health. Obesity rates for young adults are skyrocketing. Balanced nutrition also can be a problem for vegetarians or vegans. Some young adults have tried to quit smoking or find themselves struggling with substance abuse problems, but find they can’t do it alone.

Your Way In: Gaining Access

Fortunately, there’s help for young adults seeking the answers to their health problems. Older teens are “wonderful health care consumers,” Diaz said. “For instance, we have a 24-hour on-call doctor. The kids use this appropriately, they don’t abuse it.”

At the Mount Sinai Center, 10,000 New York City teens and young adults have access to free “mental health, reproductive care, primary and acute care, and specialty care: for obesity, eating disorders, Gay/Lesbian health issues, interpersonal violence, and pregnancy prevention and treatment,” Diaz said.

Some young people find that making the transition to adult health care is a bit uncomfortable. Inevitably, though, comes the time to cut the apron strings.  At the Sinai Center, “the official age is 10 to 22,” Diaz said. “Sometimes they don’t want to go.”

Although you seldom see adult patients in pediatric practices, it still “is a shock when a youth and their family learn that they cannot continue to be seen by their pediatrician,” White said. “The fact that there’s no posted policy that warns you that you will have to move on to an adult health care provider is amazing.”

Patient-Skill Savvy

Another “bridge” to the adult health care world might be the military health system; for others, it’s college.

The University of Maryland Health Center in College Park serves a student body of 37,000, and includes a women’s health center, mental health unit and an urgent care clinic as well as an orthopedic surgeon onsite once a week.

Between freshman and senior year, students do pick up patient skills, said Kelly Kesler, former assistant director of health promotion at the health center.

Some health visit basics they might not have known: “Okay, you can’t just walk in and they’re going to see you right now. You need to make an appointment,” Kesler said. Or at the pharmacy, “some student had never had to bring in their own prescriptions. Some aren’t sure of the difference between a generic and name-brand medication.”

The transition process “is pretty straightforward,” White said. “You need to know how to communicate about your medical condition and what to do to stay healthy, have a copy of your medical record, know how to make a doctor’s appointment and get your prescriptions. You should learning these skills at 13 and have a transition plan by age 14.”

Yet some 25-year-olds might not be able to say with confidence (1) “I know my medication and dosages,” (2) “I know when to call my health provider to report a change in illness status” and (3) “I have an emergency plan.”

Can you fill in the blanks about your family medical history? Could you locate your medical records? Could your kids?

“I believe my current cardiologist has all my medical records,” Len Ward said. He doesn’t sound too sure. “I wouldn’t know where to start,” added Ebonie Williams, a social worker in Manassas City, Va.

Taking control of your medical record doesn’t have to be a big deal, White said: “I just discuss what’s in it and give it to kids on a flash drive; you just download it. They just put it on their computer. I ask them to keep it in a secure place where it stays confidential.”

“I can’t emphasize enough the importance of prevention: learning stress-management techniques now, basics like sleep hygiene,” Kesler said. Above all, college health care “is an opportunity for students to learn about advocating for themselves.”

Health Insurance Changes and Challenges

High school graduation, leaving for college, navigating in an increasingly tight job market – young adults face a lot of changes and moves. In the midst of all those shakeups, finding health insurance coverage often gets lost in the shuffle.

“This age group needs access and services but are least likely to get it,” Diaz said. In 2008, three out of every 10 uninsured persons was a young adult.

But thanks to recent changes to health care coverage laws, young people have increased options when it comes to coverage. The Affordable Care Act legislation, effective September 2010, means that parents can keep young adults on their health insurance plan until age 26. In the past, coverage ceased by age 18 or 21, leaving young adults who couldn’t get coverage through employment adrift without many options.

Now, even young adults who are married, not living at home or not in school can be added to a parent’s plan, as long as they’re not eligible for coverage through their own or a spouse’s employer. Research shows that a significant percentage of young adults are saying “Sign me up!” A 2011 survey of health care providers found that at least 600,000 young adults joined their parents’ insurance plan within a few months of the passage of the law.

But having insurance doesn’t always mean access to care will be easy.  Many recent college graduates no longer live in the same city or even state as their parents—and consequently, their health insurance networks. Finding a provider who will accept a particular plan—or even finding out if a given provider will accept a plan—can be tricky. Websites such as ZocDoc.com or a family’s insurance provider’s website might be a good place to start, but youth and families may need to make some phone calls to verify coverage.

Of course, for some young adults, insurance through their parents still isn’t an option. If their parents can’t or won’t cover the cost of premiums and young adults are unable to pay, if parents don’t have access to health care plans at their place of work or if parents are on Medicare, young adults may need to find coverage through an individual insurance plan (see sidebar for more information about finding an individual plan). And more changes are coming; by 2014, Medicaid requirements are set to expand, and many young adults with low incomes will be eligible for Medicaid insurance coverage.

In any case, a spirit of independence and advocacy – and a willingness to embrace developing changes in health care – can serve young adults well as they start navigating the health care system on their own.

“Students have an advantage over older folks like us,” Kesler said. “They are very much attuned to health technology. They visit respected health consumer Web sites, they can use their iPhones as pedometers and they can use a variety of apps to track their health” online.

Jessie C. Gruman, PhD

The idea that we should actively participate in our health care now attracts attention akin to the discovery of a cure for the common cold.

Here’s how I learned about patient engagement:

On my 20^th birthday, I was diagnosed with Hodgkin Disease and spent considerable time on life support while my doctors tried to halt the cancer’s growth. I was devastated. I was just a child. I thought, “I can’t die now – I’m just beginning!”

After I was well enough to go home, I began the daily trek to the hospital for weeks of radiation treatments, followed by two years of debilitating chemotherapy.  I was skinny.  I was hairless.  And I was non-compliant.

Each time the doctor administered my chemotherapy, he would direct me to take six pills daily at regular intervals for the next two weeks.  I didn’t do it.

One day I might take two pills.  Or six all at once.  Some days I took none.

My doctor warned me to stay home because my immune system was at low ebb and I was at grave risk for infection. 

I went out dancing.

I now look back at my behavior in awe and disbelief: millions of dollars worth of biomedical research was distilled into the knowledge and experience and procedures and drugs aimed at a disease costing hundreds of thousands of dollars to treat, which ultimately largely relied on the actions of weak, skinny, scared adolescent – to have its impact. 

And I really struggled to make it work.

I was desperate not to die. But I couldn’t follow my doctor’s exacting plan. 

Why?  Well – it was 1972 and there were no anti-emetic drugs, which meant that I threw up every 15 minutes for 48 hours each week. My creative approach to pill-taking was an attempt to find some brief respite from the physical torture – an hour of sleep, perhaps?  

And I was young, deprived for months of friends and fun, longing for a sign that I might someday have a normal life. How could a few hours of dancing hurt me if I was careful? 

I was engaged in my health care – no doubt about it.  I spent hours scheduling tests, sitting in waiting rooms, finding new specialists, filling prescriptions, ferrying records from doctor to doctor, urging them to communicate with one another and receiving treatments. But sometimes short-term needs crowded out the long-term rewards of strict compliance with my treatment.

Since then, I marvel at the energy and effort I have devoted during my three subsequent cancer diagnoses to organize my care and follow the recommendations of my small army of doctors. And I am amazed that, despite my knowledge, experience, confidence and commitment, I can still fall so short of doing what is recommended to save my own life.

The lesson that I take from my experience as an engaged, serial non-complier — and that I have learned from the hundreds of people I have interviewed about their experience with health and illness – is that engagement in our health care means we are trying over time to make the best possible use of health care services and technologies available to us. 

This means that sometimes we have the wisdom, ease and discipline to take the long view: We exercise, eat modestly and keep tight control of our blood sugar now because we know it will benefit our health over time.  Sometimes immediate stresses crowd out our good intentions: We delay getting the colonoscopy because it eats up a whole day and our jobs are already on the line. We choose to buy groceries rather than this month’s supply of blood pressure medication.

There are a few health care leaders who understand that engagement does not start and end with adherence to treatment.  Judy Hibbard’s Patient Activation Measure encourages professionals to plan interventions based on an assessment of our overall confidence in participating in preventing and treating disease. Kate Lorig’s Chronic Disease Self-Management Program gathers peer support and advice to help those with chronic conditions do the full range of tasks required to care for themselves.  Victor Montori and his group at the at the Mayo Clinic conduct research on “minimally disruptive” medicine.  David Sobel, at the Permanente Medical Group, develops programs and trains staff to help patients integrate the demands of their treatment into their busy lives.

But this expansive understanding of engagement is far from the norm.

There is growing recognition of our vital and considerable role in our health care being sparked by new policies that link payment for services to outcomes and our experiences: pay for performance and other incentive programs for primary care clinicians; shared savings via Accountable Care Organizations; Medicare payment policies to prevent re-hospitalizations; patient experience of care ratings. Each of these nudges at clinicians and institutions to set in place practices and policies that will reward them to help us to participate more actively in our care.  

Nonetheless, I have two persistent concerns about the way many professional stakeholders currently address patient engagement.

First, that programs to engage patients (or employees or members) in their health care target only very specific behaviors: Lose weight.  Be physically active. Control blood sugar.  Fill in the health risk appraisal.

And second, that engagement is most often equated with compliance. Increasingly, we must do these behaviors or we will be fired by our primary care doctor or will pay extra for health benefits.

Engagement does not mean that we comply exactly with specific directives. Rather, it means that we act to the best of our ability to find and make good use of the health care available to us. The range of actions that we must take to benefit from our care far exceeds those few targeted behaviors: 

• We must find the right doctors to care for us, consult with them, coordinate communication among them (in the absence of transportable electronic health records) and pay for their services.
• We must, with our clinicians’ help, make informed decisions about care, participate in developing treatment plans and then implement our part of those plans over time. 
• We must educate ourselves and act judiciously on what we learn about prevention, care for minor illnesses and attend to danger signs that indicate that any further delay in seeking care is dangerous.

Being engaged in our health care means trying to do all of this.  Indeed, each of us must do all these things at some point if we are to realize the benefits of our health care.  And we must do so even though we may be ill or frail or lack skills, knowledge or confidence.

We will not always be able to keep our eyes on the prize as defined by our clinicians.  But we can be greatly helped by knowing what options we have, what they cost in terms of time and money, and how they may affect our ability to work and play.  We most often lack this information. Sometimes we need skills training to manage our symptoms and use our drugs and devices safely.  All of us do better working with trusted, knowledgeable clinicians who help us set priorities and problem solve with us about how to care for ourselves and those we love.

I am alive today because I have been engaged in my health care.  Without my efforts, all that beautiful science, all those marvelous innovations – the surgeries, the drugs, the devices — all my clinicians’ experience and advice would have no effect.  I have to do the best I can to show up, get the tests, eat as directed, take the pills, follow the advice and coordinate my care or I will not realize the benefit.

Trust me, our skin is already in the game.

Related Links: 

• Patient Engagement: Experts Talk about Challenges – Judith Hibbard
• Patient Engagement: Experts Talk about Challenges – David Sobel
• Don’t Miss the Chance to Engage Us in Our Care When Introducing Patient-Centered Innovations – Jessie Gruman
• Engagement Does Not Mean Compliance – Jessie Gruman
• No Magic Pill to Cure Poor Medication Adherence – Jessie Gruman

Trudy Lieberman

On a chilly New York day, a sales agent for UnitedHealthcare stood on a noisy street corner in Spanish Harlem pushing Medicare Advantage (MA) plans.  He was engaging in “table marketing” — a way to snag new customers, converts from other MA plans, he hoped.  The table was stacked with sales brochures and booklets explaining United’s “community plan” for seniors eligible for both Medicare and Medicaid.  It was hard to say what explaining he could do to illuminate the details inside his 105-page enrollment booklet.  I asked him if people understood what they were buying.  First, he said, they have to know it’s an HMO.

People often don’t understand that with an HMO they must stay in the health plan’s network for care.  One consumer advocate, who helps seniors when they run into such problems, told me it was common for seniors to sign up for a Medicare Advantage plan not realizing they must use network physicians.   Once they learned that he, he said, he would have to disenroll them and put them back in traditional Medicare with a Medigap policy.  When another sales person came along and sold them another MA plan, he would have to disenroll them again and return them to Medicare while they missed doctor’s appointments in the meantime.

None of this is surprising.  Most people don’t understand their health insurance, a point underscored in a recent report issued by Consumers Union.  The report, which describes the challenges consumers face in selecting health plans, foreshadows what is likely to happen when health reform takes full effect.

The CU report should be required reading for anyone who thinks that simply piling more choices on consumers and providing plan descriptions via some website will make consumers smarter purchasers and as a result, the insurance market will offer better products.  CU concluded that the difficulties of understanding how health insurance works “are so profound that the vast majority of consumers are essentially being asked to buy a very expensive product — critical to their health — while blindfolded.”

Focus group testing revealed that consumers dread shopping for insurance.  No kidding! So what do they do?  They take short-cuts to get through the task.  And guess what?  They often come to rely on insurance agents—good and bad — to recommend a policy that may work better for the agent’s commission than for a specific consumer’s situation.   Consumers may miss altogether or by-pass the glossaries of common insurance terms and plan disclosures when they realize these decision tools are not as fun or user friendly as say Orbitz or e-Bay shopping. Law makers promised that more transparency and information would help consumers make better choices, leading to more competition and lower prices.  Consumers Union’s research concluded that this policy objective “may not be realized.”

Furthermore, participants in CU focus groups indicated that they didn’t necessarily want the cheapest plan.  They wanted one that represented the best value they could afford.  But finding the best value was downright difficult.  Cost-sharing concepts, particularly co-insurance, are hard to grasp, the report noted.  Consumers are not sure who pays the 20 percent (or 30 or 40 percent) co-insurance.  They didn’t know if it was the health plan or the patient.  And they weren’t sure whether “out-of-pocket maximums” or benefit limits were good for the patient or the insurance company.   On a more basic level, some focus group participants could not calculate simple percentages like 20 percent of $1000.   These findings cast a dark cloud over the notion that consumers will make the health insurance marketplace work better.

CU recommended that one way to make shopping easier may be to standardize health plan choices, reducing the variation but keeping some that might be manageable.   Indeed that would help, and it’s worth recalling that after a long period of deceptive marketing practices from sellers of Medigap plans, Congress finally standardized the policies in 1991.  That not only simplified the buying decision by reducing the number of choices, it also ended deceptive sales tactics. That was the high water mark for consumer protection for health insurance policies.

The Medicare prescription drug law, which encouraged the growth of MA plans, undid all that.  It’s the Wild West once again.  With so many choices now available for seniors in New York City and elsewhere, it’s easy to see why a passerby might sign up for insurance from a friendly salesperson hawking on the street.

Related Links:

• Are We All Ready for Do-It-Yourself Health Care? – Jessie Gruman
• Pothole Forming Ahead: Aging and the Migration of Health Services and Information Online – Jessie Gruman
• Guest Blog: Instant Access & Old Faulty Assumptions – Rima Rudd

Patient Perspectives

Quality health care encompasses more than measuring clinical outcomes.  In addition to treating a condition or illness, true quality care also considers a person’s emotional well-being and their unique circumstances.

Lene Andersen of The Seated View writes about her experiences as a young girl with severe rheumatoid arthritis, moving from one hospital setting to another.  During the many years she spent in rehab before and after having surgeries, Lene writes, “I got a thorough education in what it was like to be institutionalized…places with no warmth or emotion, places more like prisons, places of abuse and brutality.”  Lene adds, “We now have laws like the ADA and AODA that guarantee our continued right to be here.  Laws that enshrine the obligation of the norm to make room for the different.”  However, as the next bloggers share, making room for such differences remains challenging.

Blogger Kathi Kolb, better known as The Accidental Amazon, had what she believes was an abnormally uncomfortable colonoscopy: “I woke up during the procedure, to find myself with severe abdominal cramping, somehow managed to mumble that I was awake and in pain, and got no help for it.”  She also had a remarkable lack of personalized follow-up when she attempted to get accurate information about her test results and an explanation for why the doctor hadn’t offered more pain relief.  Having had a previous breast cancer experience, she describes this re-entry into cancer screening and treatment as a “YIKES! WHEW!”

In Better Health with a Friendly Doctor, Physician Mark Thrun writes that a healthy dose of compassion and understanding from health care providers could go a long way in delivering quality care.  While watching his son play a school football game, Mark, like other parents, worries from the sidelines that his son might get injured.  But Mark also worries that because he is gay and his son has two moms and two dads, in the event of an emergency, he might not be permitted to stay with or visit his son in the emergency room or hospital.  “I pray that I am never left in a waiting room, separated from my child, feeling helpless,” Mark writes.  ”Indeed, my son is reaching an age where he no longer wants to be seen holding his fathers’ hands.  But that should be his choice, not the decision of a poorly experienced medical provider.”

Related Links:

• Why Patient Care Needs To Get Personal – David Katz
• The Lemon of Illness and the Demand for Lemonade – Jessie Gruman
• Hard Cold Facts, or Hard Cold Doctors? – Andrew Robinson

Jane Sarasohn-Kahn

“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…

Related Links:

• Revisiting Those Explanations of Benefits – Trudy Lieberman
• Patient Engagement: The Challenge of Health Literacy – Connie Davis
• Patient Navigators: Are They Necessary or Just Nice? – Jessie Gruman
• When You Have an Insurance Dispute – Jennifer Jaff