Barbara Bronson Gray, RN, MN

There’s a wonderful Seinfeld episode  where Elaine grapples with being labeled a “difficult” patient. She’s on the examining table, waiting for her doctor, when she sneaks a peek at her medical chart. She discovers that she is described as “difficult” in her record. Elaine reacts to this harsh reality in later scenes: her “difficult” label is passed from one physician to the next via her patient history. Her reputation precedes her, and she gets crummy care as a result.

Turns out we’re a nation of doctor pleasers when it comes to health care.  A recent study conducted by the Palo Alto Medical Foundation Research Institute and the Dartmouth Center for Health Care Delivery Science found that patients avoid challenging their physicians because they’re afraid of getting the “difficult patient” label.

Researchers conducted six focus groups, with mostly Caucasian, well educated and above average income patients.  All characteristics that might make you assume they would be comfortable and self-confident dealing with physicians. The researchers were surprised to discover that participants reported that they frequently hold back from sharing their preferred care choices with their physicians and from asking questions out of fear that it might damage their relationship with their doctor.

Have you ever felt this way?

Here’s an example of a common health care experience and some suggested replies:

You want to hear more about the pros and cons of a recommended diagnostic treatment, procedure or surgery. You’re interested in getting more information or maybe even a second opinion. But you’re concerned that pushing back a bit to get more information might hurt your relationship with your doctor.

Say something like this: “I need more time and information to help me understand and make my best choice. How can you help me learn more about my options?”

Or “This is a big decision for me. I want to get more information and talk to my family and other experts before I decide what to do next.  How quickly do you think I need to make a choice?”

The answers you get will provide you with some insights about how likely it is that this clinician will be comfortable with helping you make choices about your care that are best for you.

If your physician steps back, grumbles, resists, or worse, scribbles “difficult patient” in your chart, you might consider finding another physician.

There’s an effort underway, supported by organizations like the Informed Medical Decisions Foundation, to increase comfort with and skills in what’s called Shared Medical Decision-Making.  The Foundation (and others) is advising physicians that patients often find it difficult to express their preferences to their doctors.  They suggest doctors need to explicitly tell patients that their opinion matters and that it’s “OK to disagree.”  In addition, the Foundation is creating patient-physician decision support tools that help both walk through the pros and cons of many common medical procedures.

Changing patterns of patient-physician behavior is going to take time. In the meantime, try to see your physician as your consultant. Develop your questions in advance when possible and do ask them. Listen. Interact. And then, ultimately, decide.

Try not to worry about being called “difficult.” Your questions can help you make the best choices for you and your family. That’s worth it.

Related links:

• Other posts by Barbara Bronson Gray
• “Patient Engagement!” Our Skin is in the Game – Jessie Gruman
• The Formidable Complexity of Making (Some) Health Decisions: Book Review – Jessie Gruman
• The “True Grit”-tiness of Sharing Health Care Decisions with Our Doctors – Jessie Gruman
• Talking about Medical Tests with your Health Care Team – Prepared Patient feature
• Seeking a Second…or Third…Opinion – Prepared Patient feature

Jessie C. Gruman, PhD

This article was written by Associated Press writer, Marilynn Marchione, and appeared on the USAToday website.

 Too often, patients with advanced heart failure don’t realize what they are getting into when they agree to a treatment, and doctors assume they want everything possible done to keep them alive, says the new advice, published Monday by the American Heart Association and endorsed by other medical groups.

It calls for shared decision making when patients face a chronic condition that often proves fatal and they need to figure out what they really want for their remaining days…The goal is “not only living long, it’s living well. People often make decisions about the ‘long’ without even considering the ‘well,’” said Jessie Gruman, president of the Center for Advancing Health, a patient advocacy group. The heart association asked Gruman, who has had several cancers and a heart problem, to review the advice from a patient’s perspective.

The worst thing is to have no plan or clear goals when an emergency occurs, she said.

“The person who’s ill may not have particular cognitive clarity and the caregivers may be upset and exhausted. They just haven’t thought it through — they haven’t had a chance to think it through. They’ve never done this before,” Gruman said.

Read the rest of this article at USAToday.

Related Links:

• A Valentine To Shared Decision Making (Health Affairs Blog) Jessie Gruman
• Evidence That Engagement Does Make a Difference  Jessie Gruman
• The Formidable Complexity of Making (Some) Health Decisions: Book Review – Jessie Gruman
• Guest Blog: The Trouble with Trust – Barbara Bronson Gray

A recent report by the Institute of Medicine has called on the nation’s schools to play a key role in stemming the steady increase in childhood obesity by requiring physical education and including food literacy along with other staple subjects such as reading and math. In a Wall Street Journal article, Dan Glickman, chairman of the panel that wrote the report, said, “If you believe this is a massive national problem, you have to deal with it in a systems way.” Yet, the article continues, the challenge is in making the changes.

Schools in Massachusetts are going so far as to ban bake sales and limit access to junk foods during the school day. While it may seem like a lot for schools to take on, many health policy experts see schools—where kids spend much of their day—as a prime target for the fight against obesity.

Earlier this year, the Obama administration unveiled changes to the federally-funded National School Lunch Program to upgrade nutritional standards and ensure that kids receive more fruits and vegetables while at school.  California has already begun to address the way kids eat at school by banning soda and offering low calorie foods.  The changes seem to be working. New research shows that, compared to teens in 14 other states, California students consumed on average 158 fewer calories per day.

New research also suggests that gym class and recess are a benefit to kids mentally as well as physically, by encouraging cooperation and conflict resolution. Esther Entin, M.D., a pediatrician and clinical associate professor of Family Medicine at Brown University’s Warren Alpert School of Medicine, reports on research in The Atlantic that “suggests that recess time can be considered a potentially influential part of the school day that can foster important skills in individual students and in school communities.” Despite this, continues Entin, academic, budgetary and overcrowding issues have conspired to reduce recess.

Case in point: A recent study in the American Journal of Preventive Medicine reveals that in California, where there is a mandate requiring 200 minutes of school physical education every ten days, kids in districts that offered phys ed performed better on fitness tests.  Surprisingly, only half of the CA school districts studied fulfilled the state mandate for PE.

Related Links:

• Getting Kids to Be Active – Conversation Continues
• A New Year and a New Big Picture Look at Weight Loss?– Inside Health Care
• Diabetes: “Valuable Truths about Food and Consequences” – Conversation Continues

From day one, Patient Power has been about giving a voice to patients and addressing the real concerns and issues of patients and caregivers. That’s one reason we do regular visitor surveys, such as our current Spring 2012 survey. We constantly strive to better understand the people we serve; their needs and concerns; and the impact of what we provide. The initial results are fascinating and I wanted to share some here (click here to see the up-to-date results) . If you haven’t already participated in the survey, please add your voice right now.

• While 94 percent of survey respondents who visit Patient Power are confident in their knowledge about their health concern, 9 percent are not confident their doctor is knowledgeable. And 26 percent say they doctor does not do enough to help them as patients be more knowledgeable or in control.
• 35 percent say they look for updates on their condition every day.
• The number one reason they come to Patient Power is to see or hear interviews with experts in their condition.

When we asked them to rank the sources of their information:

• Doctor or Nurse was number one but Patient Power was a very close second followed by patient advocacy groups.
• Pharmaceutical company websites were at the bottom of the list and the general news media was only slightly higher.

When you wonder what people do with the information, the survey told us:

• 84 percent said they have or will discuss what they learned from Patient Power with their doctor and the number one benefit they cite is that it gives them more confidence in their discussions
• 97 percent have or will recommend Patient Power to others

My takeaways from this:

Among patients with serious illnesses, like those we serve, patients are becoming very savvy and active as they search for information frequently. They wish their doctors would do more, but since they don’t patients go searching themselves and become confident in what they know.

Despite millions spent by pharmaceutical companies and general health sites, patients eventually zero in on sources that are the most specific and current for them. That remains their doctor or nurse or niche websites or advocacy groups that speak directly to them. Then they depend upon these sources as their “radar” to tell them when there is something new and to put it in perspective.

I am gratified Patient Power ranks so highly and that visitors recommend us to others. If you are one of them, thank you! And you can be sure we are noting your suggestions and will improve with your guidance. We know what we do can make a huge difference in your health and we honor the trust you put in us.

Wishing you and your family the best of health!

Related Links:

• Guest Blog: How Information Can Help Conquer Fear – Andrew Schorr
• Should Doctors Protect Us from Data about Medical Risks? – Jessie Gruman
• Nine Out of 10 of Us Like Health-Related Numbers – Jessie Gruman
• Guest Blog: How To Find Reliable Medical Content On The Internet – Margaret Polaneczky

Sarah Greene is a publishing entrepreneur and soil microbiologist with a deep interest in patients’ participation in their care – and particularly in the research process.  She is the co-director of Cancer Commons, a nonprofit in Palo Alto, CA that is developing a new approach to translational cancer research that puts the patient at the front of the research process.

Extreme Openness: Sparking Progress through Patients, Researchers & Clinicians

Gruman: Building communities of engaged stakeholders is a theme that runs throughout your career.  Tell me about the different ways you have worked on this.

Sarah Greene:  I discovered somewhat by accident – early in my career — that science makes faster progress and produces better results if more people with a range of different expertise are brought together. In the past 10 years, I’ve extended this belief to patients’ participation in their care.

Gruman: How did you move from working as publisher focused on basic science to health care?

Sarah Greene:  I helped create innovative ways to share and develop molecular biology lab protocol manuals across diverse organizations and settings in the first company I founded, Current Protocols. I got into the health business by trying to recreate this approach with Praxis Press, a company that provided point-of-care online information to clinicians. We wanted to create a product with more usability, rather than just posting an existing textbook. For each health condition, we developed patient-friendly descriptions of the clinical information that could be customized and printed out by doctors.

To keep the content updated, we needed to scan the scientific literature for important findings, so we started a news service and worked with clinicians to try to define and link to good evidence.  We also published a Web-based magazine that included patient narratives and articles about the culture of medicine.  We thought it was important to bring the patient experience to the clinicians and researchers, even though this was before people were talking about empowered patients.  Anyone could read it – you didn’t have to subscribe and it became pretty popular with a lay audience in addition to physicians.  My business partner and I sold this company to Thompson Healthcare in 2002.

Gruman: And didn’t you work on the very early version of The New York Times Website?

Sarah Greene:  Yes. I was hired to develop the Times’ deeper Web content in health and helped launch the Well blog with Tara Parker Pope in 2006.  By this time, people had really started to want to talk with each other and the broader community about health and health care.  The world was a different place.  Take, for example, the Patient Voices feature – it’s a simple slide show – coupled with an audio track of five or six patients describing their struggles with a single condition.  It’s amazing how powerful those patients are!  I could see that this was just a tiny piece of what you could do to include patients in the equation.

After I left The New York Times, I spent a while as the founding managing editor of the Journal of Participatory Medicine  (JoPM).  It was there – actually, through putting together the inaugural issue with you, Jessie – that I started to see the full potential of patients participating in their care.  There were some powerful articles in the JoPM as we attempted to define this emerging field: one by Gilles Frydman on patient-driven research, another by Richard Smith on peer review and bias in publishing. Around that time I wrote an editorial that crystallized my thoughts on patient involvement, “Participatory Medicine as Revolution! Think Critically! Communicate!” And yet I despaired that this was reaching an audience that already was on board with participating in their care.

Gruman: And what are you up to now?

Sarah Greene:  Cancer Commons is a nonprofit translational medicine network that links cancer patients, clinicians and scientists in “rapid learning communities” with the goal of developing precision therapies faster and getting them to patients faster. Central to the idea is that patients are treated as partners rather than simply as subjects.  We hope that by closing the loop between patient insights and research it will be possible to speed the learning process and achieve better outcomes.

It works like this: Editorial boards made up of leading clinical researchers in each cancer curate molecular disease models (MDMs) that identify the most relevant tests, treatments and trials for each molecular subtype of that cancer. Patients and clinicians access the MDM through Web-based applications and content to inform their decisions about testing and treatment. More data is pooled from academic institutions conducting trials, clinical case studies, and patient-donated data and surveys, to interpret and discuss in forums that engage all the stakeholders.  This collaborative conversation based on large and diverse datasets will validate or refute the current MDM. The editorial boards reach a consensus about the evidence under discussion and update the MDMs accordingly.  So patients and clinicians always have access to the latest clinically actionable information.

We have seen some remarkable examples of patients joining with researchers to catapult research forward. The recent Sage Bionetwork Congress highlighted a few impressive examples of how researchers and patient groups are taking on this multiple-stakeholder model.  For example, Kathy Guisti spoke about founding the Multiple Myeloma Research Foundation, after being diagnosed with the disease, and their successes over 10 years: building a tissue bank, collecting over 3,500 bone marrow samples, collaborating with researchers to sequence the myeloma genome, and networking with 16 clinical centers to initiate 40 trials, with 4 new drugs FDA-approved and nearly 2 dozen more in accelerated trials.

We think there are many more people with cancer who are actively engaged in their care who would welcome the opportunity to participate in a meaningful way with researchers.  Many leading clinical researchers too have realized that collaborating on datasets and with patients is now possible with internet and sequencing technologies and that collaboration may be a necessity to make real progress in drug discovery. We hope, at Cancer Commons, to build the tools and provide the linkages that will facilitate collaboration and speed research.

I just read an inspiring book by Michael Nielsen – Reinventing Discovery: The New Era of Networked Science – which describes the power of crowdsourced data and expertise in the fields, primarily, of math and physics. In biology of course, the human genome project is exemplary, and Nielsen provides a roadmap for how these collaborations have succeeded (see his Ted Talk).  Here’s a great quote from the book that captures this spirit:

In an ideal world, we’d achieve a kind of extreme openness. That means expressing all our scientific knowledge in forms that are not just human-readable, but also machine-readable, as part of a data web, so computers can help us find meaning in our collective knowledge. It means opening the scientific community up to the rest of society, in a two-way exchange of information and ideas.

Thank you, Jessie, for the opportunity to discuss my latest project!

Related Links:

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

• Engaging Patients and Families as Partneres – Kalahn Taylor-Clark
• Expanding the Primary Care Workforce – Janet Heinrich
• Enabling People’s Engagement in their Hospital Care – Maulik Joshi
• HIT and Patient Engagement – Chris Gibbons
• Embedding Engagement into Quality Measurement – Patricia Barrett
• Time, Tools and Temperament- Requirements for Engagement – Douglas Kamerow
• 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

A few weeks ago, a letter arrived from the Life Line Screening company enticing me to come in for a “simple, potentially lifesaving screening” to assess my risk for strokes and other vascular diseases.  The pitch contained the usual scary messages, noting that “cardio-vascular disease is the #1 cause of death in the United States for both men and women.”  A small flyer inside the envelope warned that the offered “screenings will give you information that your annual check-up may not reveal,”  explaining that “ultrasound screenings can actually see inside your arteries” and reveal bad stuff that doctors can’t see during an annual exam.

As if that weren’t enough to reel in customers, the offer was framed like those bulk sales come-ons you see offered by women’s clothing chains—buy $150 worth of merchandise and get $25 off on your next purchase.  Life Line Screening, which bills itself as the country’s leading provider of community-based preventive health screenings, offered five tests: carotid artery screening, heart rhythm screening, abdominal aortic aneurysm screening, peripheral arterial disease screening and osteoporosis risk assessment, all for only $149.   That was a savings of $126 off the complete package of five screenings, which retailed for $275.

Buying in bulk seemed to make sense.  Or did it?

The answer gets into the controversial realm of screening tests.   Health policy experts implicate unnecessary tests as one reason America’s health care tab is so high, and the uber authority on such screenings, the U.S. Preventive Services Task Force (USPSTF), doesn’t always recommend every test that some physician or some outfit like Life Line Screening wants to sell.  So I went to the USPSTF website for guidance, which is what anyone should do who receives a sales pitch for screenings, no matter how inviting they sound.

The task force has not recommended peripheral artery screening or carotid artery screening for people with no symptoms. It has, however, recommended a one-time screening for abdominal aortic aneurysm in men aged 65 to 75 who have smoked and routine screening for osteoporosis in women 65 and older.  Both those screening tests got a B grade, which means there is high certainty that the net benefit is moderate or that there is moderate certainty the net benefit is moderate to substantial.  Screening tests that get “A” grades are those where there is a high certainty that the net benefit is substantial.  “A” graded tests include blood pressure screening and screening for cervical cancer.

Sometimes screening tests do turn up abnormalities as evidenced by the testimonials that sellers like to point to.  But evidence examined by the USPSTF indicates that as a whole, many widely advertised screening tests are not beneficial.

And your insurance may not cover any screenings that the USPSTF does not recommend.

Life Line Screening’s website tries to push back against official public health guidance about their tests with information they call “Health Screening Concerns & Complaints.”  The questions they pose and answers they provide are carefully worded to give both the company and screenings a favorable gloss.   One question notes for example, that the USPSTF recommends against carotid artery screen for patients with no symptoms and asks if Life Line Screening has “my best interests in mind.”

The company responds that the task force recommendation is “widely misunderstood,” and adds, “The US Preventive Services Task Force does not examine community-based screening for the purposes of early identification and treatment with lifestyle coaching and medical management, which is what Life Line Screening does.”   Another Q & A response assures customers that “even if your health screening found no problems, knowing that you are on the right track should make the time and money spent well worth it.

Doctors are also beginning to review the value of some often-used screening tests.  Nine medical specialty boards, under the leadership of the American Board of Internal Medicine (ABIM), have recently recommended that physicians reconsider the use of 45 common tests and procedures such as M.R.I.s when someone complains of back pain.   The docs’ announcement, accompanied by their partnership with Consumer Reports for a national “Choosing Wisely” campaign, is a big deal and should serve as a warning to patients (aka customers of private screening businesses) to do their homework before agreeing to screenings that are not likely to improve their health.

Related Links:

• Will We “Just Say No” to Screening Tests? – Jessie Gruman
• What Are the Chances We Need to Understand Probability? – Jessie Gruman
• Guest Blog: We Interrupt This State Fair for a Little Prostate Cancer Screening – Gary Schwitzer
• Talking about Medical Tests with Your Health Care Team – Prepared Patient feature
• Trudy Lieberman’s archived posts

Connie Davis MN, ARNP

Self-efficacy keeps coming up everywhere I go. I have the honour of working with the California Institute for Mental Health on the Small County Care Integration collaborative. The teams are working on integrating behavioral health and primary care. The clients they work with have serious mental illness and are often also facing physical illness, sometimes partially due to the medications they take for their mental illness. The teams are measuring the self-confidence of their clients using the question Dr. John Wasson and his team developed: “How confident are you that you can control and manage most of your health problems?” Responses: Not very confident, somewhat confident, very confident. (This question is copyright FNX Corporation USA and the Trustees for Dartmouth College.)

Dr Wasson has actually suggested that what the world needs is a “Campaign for Confidence.” I agree with him. What would happen if we stopped focusing on clinical outcomes and specific behaviors and helped people feel more confident? I’m looking forward to finding out.

What could we do to improve confidence? First of all, remember that we need to be focusing on the problems the person has, not what health care professionals think they should focus on. Corbin and Strauss, in their qualitative study of people with chronic conditions, Unending Work and Care: Managing Chronic Illness at Home (1988), provide the guidance we need. People with chronic conditions face three tasks:
1) To manage the illness (to take medications, do treatments, monitor the condition, work with the health care team, etc.)
2) To adapt life roles (how to manage daily life and demands of life in light of the illness)
3) To manage emotions (most often anger, fear, frustration, and depression)

Whenever I am in an interaction, I know these three ideas can help shape the encounter. How is the person doing with these three tasks? What can I do to help? Are they confident in these three tasks?

The next thing to do is to build confidence through mastery. This is one of the techniques known to increase efficacy. Learning new skills is important. Making action plans based on self-determined goals and achieving them is another. There are many ways to do this. The Five A’s grew out of successful smoking cessation interventions and can be useful. The way that I have found most useful recently is Brief Action Planning. Dr Steve Cole initiated the idea, and several of us have worked together to refine it. The Action Planning process of the peer-lead Chronic Disease Self-management Program is another excellent example.

The basics are the same:
1) Take a goal, which is usually something that is accomplished over months, like “become for physically fit so I can play ball with my grandson” and break it down into smaller steps that can be achieved in a week or two, like “walk around the park three times this week on Monday, Wednesday and Friday after breakfast.”
2) A good check on the plan is to complete a confidence scale of 0-10, 0 indicating no confidence to complete the plan and 10 is totally sure. A confidence higher than 7 indicates increased likelihood of success, and if the confidence level is lower, the plan is revised until confidence is high, remembering that success increases confidence.
3) The check-in on the plan is important, too, either with the person who helped make the plan or a self-check in.
4) When plans go awry, problem solving is used. The basic steps are identifying the REAL problem, brainstorming ideas and picking one to try, really try for a week or two, to see if it helps. If the first idea doesn’t help, try another, or get ideas from another. If that doesn’t help, sometimes now isn’t a good time to work on this issue and something else might help.

Self-efficacy is a many faceted concept. Hopefully these ideas provide some guidance on what to do to build it.

Read Connie Davis’ Self-EFFICACY, Part 1 here.

Related Links:

• Self-Efficacy, Part 1 – Connie Davis
• Guest Blog: Minimally Disruptive Health Care: Treatment that Fits – Marcus Escobedo
• “Patient Engagement!” Our Skin is in the Game - Jessie Gruman
• Are We All Ready for Do-It-Yourself Health Care? – Jessie Gruman
• Interview Series – Patient Engagement: Expert Connie Davis Talks about Challenges
• Interview Series – Patient Engagement: Expert Kate Lorig Talks about Challenges
• Interview Series – Patient Engagement: Expert David Sobel Talks about Challenges
• More posts by Connie Davis

Jessie C. Gruman, PhD

What do people do about uncomfortable, unanticipated side effects of medication?

The answer to this question is often: “Stop taking it.”

Our unwillingness to take our medicine as directed is often mistakenly viewed by clinicians and researchers as a sign that we are not “engaged” in our care. Baloney. Many of us would be perfectly happy to do so were it not for those pesky side effects.

This might appear to be a trivial problem unless you are the one who has it.  But given our generally casual approach to medication adherence (estimated to be responsible for more than $290 billion in health care expenses annually) it is worth a closer look at policies, incentives or new delivery system models that might help us out when a new medication makes us itch uncontrollably.

Let’s start with how common medication side effects should be handled…

In a rational world, I would call my clinician, she returns my call within 12 hours, we talk about it, she suggests cutting the dose, timing it differently or prescribes an alternative approach.  In an ideal world, I suppose this whole interaction takes place within a couple hours online with a member of my care team in my medical home via a patient portal and includes short follow up email conversations over the coming weeks to monitor both my symptoms and drug side effects.

Is that how it works for you?

It’s not how it works for the four people who mentioned this problem to me in the past week. For them, itchiness was the most popular reason given to stop taking new prescription medications (followed by wobbly stomach). This is an unscientific sample to be sure, but the number of complaints in such a short time caught my attention, as did the fact that all of them contacted their clinician to ask about whether this was normal and whether they should stop taking the drug.  And none of them got a reply within 48 hours.  That would be a lot of itching if they had waited for their clinician’s OK.

One person reported reading carefully through the package insert, WebMD and the manufacturer’s online site to find out about side effects. Itchiness was not one of them, but when he Googled the name of the drug and “itchiness,” the search came back with hundreds of reports by people who had the same complaint. Many of them reported that they stopped taking their medication—and the itch went away.  Note that these people were sufficiently “engaged in their care” to go online to find out if anyone else was scratching.

Is this a trivial problem? Not to those people with itches and wobbly tummies, certainly. Their original complaint remains untreated, plus they have added an additional source of discomfort.  But is it trivial to clinicians or employers or health plans or anyone concerned about the overall cost of care?  Perhaps not.

Drugs that are purchased but not taken are wasted. When we discontinue medication meant to cure disease or manage symptoms, predicted outcomes are less likely to be reached and this can affect clinician and institutional payment.  Employees miss work or are distracted by the original problem or drug side effects.

The size of this problem is unknown, but consider that 60 percent of the U.S. population reported using one or more prescription drugs in 2010.  That would be 12 prescriptions per capita.  In one year.  The number of different medications individuals use means that side effects and drug interactions are more common. What percentage of the nation’s $320 billion annual prescription drug expenditures could be reduced – or the effectiveness of that investment improved – by addressing this problem?  And just what would it take to address the problem of new side effects, anyway?

Here’s what solutions look like from our perspective:

First, I can hit Dr. Google. Searching produces a cascade of information, some of it useful (if only to validate my experience), but much of it is biased or inaccurate. Information can reduce uncertainty about the cause but doesn’t touch the itching itself. And I risk exacerbating my original complaint by not treating it if I stop taking the drug.

Next, I can head to the pharmacy.  Pharmacists are an excellent resource.  They can provide accurate information about side effects if I can get one to talk to me.  But they don’t know my medical history or why my clinician prescribed this medication specifically. I probably will have to provide information about all the other medications I take. And after all this, the pharmacist can suggest alternatives but can’t prescribe them.

As an alternative, I can call that handy medical advice line provided by my health plan.  Nurse advice lines present similar challenges to pharmacists, although with less specific drug knowledge.

The best alternative is to talk to my prescribing clinician.  He knows me, the history of the problem, my allergies and sensitivities, and he knows why he prescribed this medication as opposed to the generic or a similar one.  He could work with me to try different approaches until together, we find one I can tolerate that will address my original complaint. But this takes time, and my limited sample from last week suggests that many busy clinicians – generalists and specialists alike – just don’t have the back-up organization to respond to what appears to be a kind of low-level query.

The patient-centered medical home model promotes using a team approach to responding quickly and knowledgeably to such inquiries, supported by a patient portal and secure e-mail communication. But today, most people do not receive primary care in practices organized in this way.  Further, a significant percent of prescriptions are written by specialists who lack support and incentives to address this concern.

Why raise this issue?

Because it is a good illustration of how advances in health care simultaneously promise better outcomes for us (so many new drugs that can do so much more!) while demanding more from us (managing side effects, complicated dosing regimens and potential drug interactions!).  To realize the potential benefit of all the new prescription medications now available, we need to invest more time and energy in figuring out which ones can do the job, given the trade-offs of effectiveness, side effects, interactions and expense.  Obviously, we can’t make these calculations alone; we need the ongoing help of our clinicians to do so.  But our clinicians have yet to realize the extent to which these additional choices of medications require more and different conversations with us than they are used to or prepared for.

This example also illustrates a slow leak in resources – money and time: ours, our clinicians’, our employers and our hospitals.  This slow leak is one of many that undermine the potential of the nation’s investment in health care to reach its potential in improved outcomes.

And for us patients and families particularly, it tells a true story about how our efforts to use the tools of health care to live our lives free of suffering are thwarted by a mindset that equates compliance with engagement and inadvertently prevents the kind of collaboration that will give us the best shot at doing so.

Related Links:

• Engagement Does Not Mean Compliance – Jessie Gruman
• Check-In-The-Box Medicine: Can the Blunt Instrument of Policy Shape Our Communication with Clinicians?  – Jessie Gruman
• “Patient Engagement!” Our Skin is in the Game  - Jessie Gruman
• Side Effects: When Silence Isn’t Golden
• Guest Blog: Minimally Disruptive Health Care: Treatment that Fits – Marcus Escobedo
• Guest Blog: Adherence: The difference between what is, and what ought to be – Scott Gavura

Barbara Bronson Gray, RN, MN

“I wasted time, and now doth time waste me.” – William Shakespeare, Richard II

A friend recently asked me: Why do we have to wait so long for doctors and not for other professionals, like lawyers, accountants or dentists? And is there anything we can we do about it?

A 2009 study estimated that we spend 24 minutes waiting to see a health care provider.  I suspect new data would show that we are waiting much longer. As you might guess, overall satisfaction drops the longer we have to wait.

Waiting to see a physician is much, much different from waiting for an airplane or a bus.

You’re often anxious about the appointment, uncomfortable, in pain or worried. I have a friend who had to wait three hours for her first chemotherapy appointment, which seems cruel. Another friend had to wait almost an hour to get oral surgery: sitting in a cold office, having had no food or water since dinner time the night before, and very nervous.

Why Are You Kept Waiting? 

There are many different reasons why you may be kept waiting a long time.  While there is always the possibility of an emergency having caused an unusual delay, most practices seem pretty consistent; they either always keep you waiting or rarely make you wait. That’s due to the health care providers’ basic beliefs about their time and money; how much they value their patients’ time; and their ability to run a smooth and efficient practice.

A practice that doesn’t make you wait has undoubtedly made a decision that it’s not right to make patients sit very long in the waiting room. They respect your time as much as they respect their own. So they are careful to reserve a few slots every day in their schedule in case a patient’s visit takes longer than expected or there’s an emergency. They also create some “breathing time” in the schedule to help ensure the ebb and flow of people in and out won’t create a frustrating and tiring delay for their patients.

A practice that always makes you wait has a different perspective. They are typically maximizing revenue, over-booking multiple appointments to allow for some “no-shows,” and might even encourage extended patient visits and un-planned procedures because they increase the day’s revenue. Basically:

More Patients + More Procedures = More Practice and Personal Revenue.

Sometimes, the practice is just lax. I had the first appointment of the day to see my general practitioner and waited a very long hour. When I asked the office staff how that could possibly be and was there an emergency, they said, “Oh, no, she comes in when she comes in.” Hum.

Some of us mind all this more than others. A good friend of ours told me he has come to expect long waits when he or his wife sees a specialist. (He’s right. Average waiting times of specialists are longer than generalists). So he brings a big stack of back issues of the Financial Times and starts plowing through them.

What Can You Do?

Here are a few approaches you can take to deal with this issue:

• Book the first appointment of the day or the first appointment after the office’s lunch period. This doesn’t always work because some practices book several people for every slot, but it’s worth a try and it’s likely to minimize your wait at least a bit.

• Call ahead and ask how the day is going in terms of appointment delays and see if you should come in a little later. I’ve tried this with various results. Sometimes they just warn you that they’ll take you based on when you come through the door.

• If you’re seeing a doctor who is prone to being called out of the office—a specialist such as an obstetrician/gynecologist or a surgeon—call ahead to see how the day is going. If you can reschedule on a bad day, you may save yourself a lot of time and aggravation.

• After you’ve waited for 15 minutes or so (or whatever amount of time you’re personally comfortable with), ask the office staff how much longer they think the waiting time will be. If their answer doesn’t please you and if your problem doesn’t require immediate attention, ask to reschedule your appointment. Somehow that often gets you seen more quickly.

• Consider talking frankly with your doctor or writing a letter explaining your frustration about the long waits and ask that the practice improve. See what happens.

• Be a super patient patient. Bring fun things to do, read or listen to, and hunker down for the afternoon with an amazing attitude. (This would be very hard for me).

More dramatic options:

• Complain about the waiting times on social media sites like Facebook or Twitter, or websites like Yelp or Angie’s List.

• Find a new doctor. Ask the new practice’s staff what their philosophy of waiting times is before you book. Listen to what they say.

• Send your doctor a bill for what you consider to be your excess waiting time. Don’t laugh. People have received checks.

• If you don’t want to keep seeing your doctor, you can sue your doctor in small claims court for your time. People have succeeded at this. It certainly makes a point.

The bottom line: Expecting me to wait a long time in a doctor’s office tells me two things. First, I don’t feel respected. The physician is, after all, my consultant. And secondly, I wonder how committed the practice is to my comfort and to reducing my anxiety when they seem to be putting more emphasis on their needs than on mine.

Related links:

• Barbara’s other posts
• The Waiting is the Hardest Part – Jessie Gruman
• Drop-kicked into a Foreign Country – Jessie Gruman

Marcus Escobedo is a Program Officer for the John A. Hartford Foundation. He manages grants within the foundation’s Medicine portfolio, focusing on improving the education and training of physicians to provide better care to older adults. More of  Marcus Escobedo’s posts can be found/followed on the Hartford health AGEnda blog. You can follow the John A. Hartford Foundation’s Twitter feed @JHARTFOUND and find them on Facebook here.

My mom has always worked hard. As a girl, she picked cotton every scorching summer on the South Texas farm where my “wela” (i.e. grandma) kept house. In adulthood, she straddled both sides of the supposed (and silly) “mommy wars.” She worked as full-time mom to my three sisters and me before taking care of other people’s children as an aide in our small town’s elementary school (working with the most difficult, troubled kids at that). Now on Medicare and about to retire after 30 years, she will have to continue working hard, as will my retired father. I’m not talking about the time they’ll spend maintaining their home or raising grandchildren. I’m talking about the difficult work that they, like millions of others, grudgingly started as they began approaching 65 – the work of managing their multiple chronic conditions. Luckily, they can still handle the load and take very good care of themselves. But what happens if it all becomes too much?

Think about it. If you are one of the 3 out of 4 older adults like my mom with more than two chronic conditions (she has COPD, arthritis, and heart disease), you probably take at least seven different medications and your pharmacist knows your face very, very well. You have to sort through different dosing instructions. You set countless appointments with your family doctor and your specialists, then have to drive somewhere else to get your blood drawn. (Last week, my father had to take his blood sample himself to FedEx for shipment to a processing center.) You try to get to the park to walk, and you plan your grocery shopping carefully to get the right low-sodium, low-fat foods. Not to mention the time and energy (and out-of-pocket money) you spend on understanding and paying medical bills.

Yet my parents, relatively speaking, have it easy. What if they had more severe conditions like dementia, or kidney disease requiring weekly dialysis? What if they were poor or disabled, living in a polluted neighborhood with no grocery stores with fresh food, and only spoke Spanish? (Luckily, my parents are bilingual.) In those cases, I’m not sure how my parents would manage to do what’s needed to maintain their health.

Although all too common, the hard work of maintaining health and the social factors that impede it often go overlooked and unaddressed in our health system. Clinicians diagnose and prescribe tests, medications, and procedures, rightly expecting patients to take responsibility for their health. When some do not follow the doctor’s advice, they are labeled “non-compliant” or “non-adherent,” like scarlet letters pinned to the chest. We should consider that not following doctor’s orders – not sticking to that low-fat diet, not taking all ten super-expensive prescribed medications, not following up with physical therapy – might actually be a rational decision, given other competing priorities and goals, and the person’s capacity to handle their care. It may be that we overburden patients with treatments that just don’t fit.

I heard an excellent framing of the problems with self-care as issues of workload, patient capacity, treatment burden and fit at a symposium given by a very engaging Dr. Victor Montori of the Mayo Clinic. At the March summit of the Institute for Healthcare Improvement, he articulated the health care context that has led us to excessive treatment burden and adherence problems: increasingly expanded definitions of what is considered “disease” and “needs treatment,” and evidence-based but single-disease-focused guidelines that do not take multiple conditions or our uncoordinated health care system into account. He outlined the different kinds and amount of work doctors expect chronic patients to undertake. If patients followed American Diabetes Association guidelines, many would need to spend almost four hours a day on self-care. There goes retirement.

As a solution, Dr. Montori offered the concept of minimally disruptive health care: health care delivery designed to reduce the burden of treatment on patients while pursuing patient goals. It takes into account the personal, medical, financial, social and contextual factors affecting a patient’s workload and capacity for self-care. It calls for moving away from provider-imposed goals like “you should lower your LDL cholesterol, hemoglobin A1C levels, blood pressure, or weight,” to “what are your goals?” which may be to feel better, live longer, or live independently.

Within this context, Dr. Montori also offered several tools for shared decision-making to find the treatment that best fits patient goals. The Mayo Clinic has carefully designed and is testing patient and provider-friendly decision-aid cards that weigh the pros and cons of different treatments for conditions like diabetes. They show patients what a regimen will mean in their real life, like whether they will gain or lose weight and how much they will have to pay. Patients can then choose what makes the best sense for them.

The concept of minimally disruptive health care and shared decision-making make great sense in the care of older adults. The concept fits perfectly with many of our grantees’ efforts to move to patient-centered goals and quality measures, as well as HHS attention to the issue. Also, with recent pushes from the field to limit the overuse of tests and procedures (not to be confused with the many low-cost geriatric assessments that are currently underused), the ideas of minimally disruptive health care and shared-decision making may be ripe for wider uptake. This would be very helpful for older adults managing multiple chronic conditions, like my very hard-working mom, who deserves treatment that fits her needs.

Related Links:

• Self-Efficacy, Part 1 – Connie Davis
• “Patient Engagement!” Our Skin is in the Game – Jessie Gruman
• Lessons from the Year of Living Sick-ishly – Jessie Gruman
• Guest Blog: Can the Blind Lead the Seeing? – Amy Berman