“I found my diagnosis on the Internet”

Raise your hand if you’ve ever gone online in search of a diagnosis that fits your symptoms or to read everything you can find about a condition you’re dealing with or a new medication you’re taking. Now raise your hand if you’ve ever talked to your doctor about what you’re reading on the Internet.

The Internet has made a bottomless well of information readily accessible to anyone with an online connection. But it seems we’re still figuring out how to incorporate this fact into the doctor-patient relationship in ways that allow everyone to feel comfortable with it.

Doctors tend to cringe when patients show up for an appointment with a stack of printouts from the Internet.

Patients tend to resent it when the doctor ignores or dismisses their personal research.

Doctors may not mind their patients’ efforts to become more informed but they don’t always trust the patient’s ability to recognize whether a source is reputable.

Patients want to know how to evaluate a source’s credibility but they don’t know where to start.

These are some of the impressions I gathered earlier this week from a health care social media chat on Twitter that focused on, among other things, that pesky pile of printouts in the exam room. (For those who haven’t discovered the weekly tweetchat, it takes place every Sunday from 8 to 9 p.m. central time; follow along at #hcsm and brace yourself for an hour of free-wheeling, fun and insightful discussion.)

 

 

 

 

 

 


So what are we to glean from all of this? Although there doesn’t seem to be a single right way for patients to share health information they’ve found online, some approaches may be more helpful than others.

Most doctors don’t have time to wade through large stacks of printouts, so patients will probably have more success if they stick to summaries and as few pages as possible.

How the topic is introduced seems to matter. Is it an open-minded exchange or is it an argument? Is it respectful of each other’s perspective? Doctors have greater medical knowledge and hands-on experience but patients are the experts when it comes to their own experiences.

One of the conundrums is how to sort the wheat from the chaff. There’s a lot of questionable health information floating around online, but if patients haven’t learned to critically evaluate what they’re reading for accuracy and credibility, they can easily be led astray by misinformation. On the other hand, it’s hard for patients to develop these skills if their doctor is dismissive of their efforts and unwilling to provide coaching or guidance.

Frankly, the train has already left the station on this issue. A 2009 study by the Pew Research Internet Project found that looking for health information online has become a “mainstream activity.” Sixty-one percent of the adults who were surveyed said they used online sources for health information, and one in 10 said that what they learned had a major impact on either their own health care or how they cared for someone else.

But here’s another interesting finding: Patients whose doctors encourage them to search out health information online are, on average, more engaged in their care and more satisfied, regardless of whether they and the doctor agree on the information. In other words, it’s the participation and the open dialogue that really matter.

Quibbles over whether patients should talk to their doctor about health information they’ve found online are no longer the point. It’s time to move on to the bigger issue of how to have these conversations in the most beneficial way possible.

A health scare, but not enough to change their ways

A heart attack or a cancer diagnosis is usually life-changing, yet many people do little afterwards to alter their lifestyle or behavior in ways that might reduce their future risk.

Various studies have been cropping up lately, all with the same conclusion. One can’t help connecting the dots and wondering what it bodes for the long-term health picture.

The bigger question  here, though, isn’t “what.” It’s “why.”

The latest study comes from Canada, where researchers found that even when people had a history of coronary heart disease or stroke that put them in a higher risk group, they weren’t much more likely than the general population to adopt three key changes associated with reducing their risk of a second heart attack or stroke: smoking cessation, regular physical activity and a healthy diet.

The study used epidemiological data on more than 154,000 individuals from 17 countries. Of the 7,500 participants who reported a previous history of heart attack or stroke, about 18 percent continued to smoke and 60 percent didn’t follow the recommendations for a healthier diet.

Not surprisingly, those who lived in higher-income countries fared better on all three measures.

Here’s another study, this time from the cancer front: Researchers who looked at survivors of melanoma, the most serious form of skin cancer, found that about one in four skipped the use of sunscreen and 2 percent continued to visit tanning salons.

The study results “blew my mind,” Dr. Anees Chagpar, the study’s author, told CBS News.

Other studies have found that cancer survivors are just as likely as everyone else to be overweight and inactive, even though these two factors are tied to a higher risk of recurrence for certain forms of cancer.

Is this a huge collective failure of patients to heed the so-called teachable moment in health care? Or does it signal something deeper?

I suspect it’s the latter. As anyone who has attempted to adopt a healthier lifestyle can attest, changing your ways is often very difficult. It takes a high degree of motivation and support to persevere, and the stress of a serious health event can add complicating factors that might not be addressed or even recognized.

Depression, for example, is common among heart attack survivors, yet the possibility of post-heart attack depression is rarely discussed with these patients. Multiple studies have found that among those who develop depression after their heart attack, the majority are undiagnosed and untreated. That they may struggle and fail to adopt healthier lifestyle habits should not be surprising.

One survivor, responding to a frank entry on the Heart Sisters blog about depression and heart attack survival, put it this way: “Physically I am not the same person and don’t think I ever will be. Everyday life details are not important to me anymore. I see myself stepping further and further behind and no one understands.”

Ditto for the physical and mental toll of cancer treatment, which can leave survivors with long-lasting fatigue, cognitive impairment, nerve damage and more. Although efforts are underway to improve survivorship care in the U.S., progress is slow and uneven, leaving many survivors – perhaps the majority – still under the radar.

The health care system itself hasn’t completely figured out who should handle the “teachable moment.” Should it be the cardiologist? The oncologist? The primary care doctor? A rehab nurse? In the meantime, opportunities to talk to patients about making behavior changes are being missed.

Then there’s the question of who pays to help people change their habits after a major health event – and I’m assuming here that many will need some support, even if it’s only minimal.

It takes staff and resources to provide the education that may be necessary, and reimbursement is often low. Although many health insurance plans include coverage for smoking cessation, there’s considerable variation in what they offer, and some states don’t cover tobacco cessation at all for their Medicaid enrollees.

We could ask people to pay out of pocket for their patient education, nutritional counseling, depression screening and tobacco quit services, but this doesn’t mean they can afford it or that they would make it a financial priority – or, indeed, that they would recognize they might need all of these.

Maybe the whole notion that a health scare should be enough to make people change their ways is flawed. It might be motivation only for some. For others, the motivating factor may be something very different. If we hold the tsk-tsk’ing long enough, we might start to figure out what really lies behind the seeming lack of lifestyle change and what can be done to have a more positive impact.

Health care’s new paternalism?

Is the patient’s blood pressure at 120 over 80 or below and controlled with one or more medications if necessary? Check.

Normal body mass index? Check.

Recommended screenings carried out according to the recommended schedule? Check, check, check.

But here’s the real question: Are all of these goals important to the patient, or does he/she see them as frustrating, burdensome and perhaps impossible to achieve?

The push toward better health care has organizations and clinicians focusing a tremendous amount of energy these days on patient outcomes. Few policymakers seem to have asked, however, where patients fit into this and how they feel about having their health goals – appropriate weight, appropriate blood pressure, glucose and cholesterol levels, appropriate prescription medications and so on – essentially dictated to them.

Is it going too far to call it a new form of health care paternalism?

If you listen closely, you can hear the beginnings of some pushback from people like Dr. Victor Montori of the Mayo Clinic, who last week talked to the Star Tribune of Minneapolis about hitting the pause button on all the checklists and having a heart-to-heart conversation with patients about what they really want.

An excerpt from the newspaper’s interview with Dr. Montori:

He argues that doctors must take into account the patients’ “values and preferences.” If one drug can bring their blood sugar down a notch, but doesn’t make them feel better, is it worth taking? “It’s making sure we don’t make any decisions about them without them,” he said. It’s a strategy that stops demanding perfection from patients and focuses on the treatments that are most important to them. “So they only get what they need and what they want.”

This is squarely at odds with the current approach of setting goals and measures and expecting all the players to reach these targets in order to achieve quality care.

There’s much at stake. By fiscal year 2015, fully 30 percent of Medicare payments to hospitals will be based on outcomes. Medical practices are dealing with similar pressure to reach specific goals in patient care.

This isn’t to say health care shouldn’t be held accountable for results. Outcomes do matter. But when an organization’s fiscal health and people’s livelihoods are on the line, it’s not hard to see why there would be a rising tide of all-around frustration when patients can’t – or won’t – meet the prescribed goals.

Meetings of the Rice Memorial Hospital board here in Willmar are normally rather subdued, but one of the most animated discussions I’ve seen in months erupted this week over the issue of patient adherence.

The doctors in the room spoke of the challenge of persuading their patients to adhere to the standard, and the frustration of being penalized when they don’t.

The hospital leaders in the room spoke of the unenviable task of being asked to meet goals that may hinge on patient decisions and behaviors beyond the hospital’s control.

The implications go deeper than this, though. What about hospitals who care for high numbers of elderly, frail and medically complex patients who may not have outcomes as favorable as that of a younger, healthy population? What about the 90-year-old who has been living with congestive heart failure for a decade and has decided it’s time to stop with aggressive management of the condition?

Should hospitals and medical practices become more selective about the patients they’re willing to take and start turning away those deemed to be too sick or too complicated or less likely to be compliant? Most Americans would agree it’s unethical (or at least unfair) to cherry-pick the “best” patients, but there’s no denying this looms as one of the unintended consequences of outcome-based payment. Left unanswered in all of this is who, exactly, will care for the sickest and most vulnerable when the reimbursement model is rigged against them.

Finally, there’s the issue of patient autonomy. The patient’s right to make his or her own medical decisions is one of the core tenets in American health care. This basic value seems to mesh uneasily, however, with performance-based payment. What happens to patients who don’t want to take a particular medication because the regimen is too burdensome or the side effects are intolerable? What about the patient who simply wants to feel better and function better rather than meeting specific target numbers?

To make things even more complicated, all of this is taking place simultaneously with a growing emphasis on patient-centered health care and shared decisionmaking.

It’s far from clear how this is supposed to fit together, or the extent to which the average consumer is aware of the push-pull between giving patients more say in their care, while at the same time deciding on their behalf what the measure of their health should be.

Don’t look for this to be resolved anytime soon. No one ever said health care was simple.

Do we need another patient survey?

Many patients – well, some of us, anyway – appreciate being asked for feedback about their experiences with the health care system.

After all, it wasn’t long ago that patients’ opinions were rarely sought. Now they’re being queried about everything from whether their hospital room was clean to how quickly the nursing staff responded to their pain.

When analyzed in ways that are accurate and meaningful, patient surveys can provide health care organizations with a reality check on what their patients really think about the care they’re receiving. Is there consistently negative feedback about inattentive staff or awful parking? Maybe it’s a sign that these need to be addressed. Consistently good feedback, on the other hand, is a strong indication of an organization that gets a lot of things right about the patient experience.

It may be time to ask, however, whether patient surveys have crossed the line into overkill.

The American Hospital Association recently said “enough already” to a plan by the Centers for Medicare and Medicaid Services to add two new types of patient surveys, one for hospital outpatient surgery departments and the other for ambulatory surgery centers.

In a four-page letter, the hospital association asked CMS to reconsider, saying the Consumer Assessment of Healthcare Providers and Systems program already includes multiple and overlapping surveys. Adding even more will likely lead to confusion among patients, the AHA contended. It’s possible, for example, that ambulatory surgical patients could receive as many as three similar surveys for the same episode of care, the AHA said.

There’s also the administrative burden of administering all these surveys and compiling and analyzing the results, the hospital association pointed out.

The AHA’s suggestion: Instead of developing separate new surveys for outpatient and ambulatory surgery patients, why not just add some supplemental questions to existing survey tools and be done with it?

If you listen closely to health care providers, you can sense the creeping onset of survey fatigue.

“Hospitals and doctors, unaccustomed to being rated and ranked like resort hotels and American Idol contestants, are suffering from performance anxiety and feeling an intense desire to be left alone,” observes Dr. Robert Wachter in a recent blog post that asks an important question: Do surveys and rankings really help improve care?

The answer seems to be both yes and no.

Poor survey results can penalize providers for factors that may be outside their control – for instance, hospitals that have large numbers of patients living in poverty, Dr. Wachter writes. Moreover, surveys sometimes apply inaccurate yardsticks or measure the wrong thing altogether, hence severely limiting their usefulness.

On the other hand, a disappointing ranking might be the motivation a health care organization needs to get serious about improving its performance. And consistently good ratings don’t tend to happen by accident; usually they signal organizations that are higher-performing.

How to reconcile these two opposites? Dr. Wachter writes:

Public reporting of quality measures not only improves the work of the measured, it improves the work of the measurer. Ultimately, a healthcare ecosystem in which reasonable measures help guide patient and purchaser choices will lead to improvements in both the quality of care and of the measures themselves. I believe we can look forward to an era of more accurate measures, measures that capture the right things (not just clinical quality but teamwork and communication skills, for example), and measures that are less burdensome to collect and analyze.

By all indications, we aren’t there yet.

Surveys that ask patients for feedback are just one piece in a larger picture that also tracks how providers are doing on key measures such as recommended immunizations and screenings, hospital-acquired infection rates and use of best practices in managing diabetes, congestive heart failure and more. Even patient surveys, however, don’t necessarily produce reliable information.

The American Hospital Association’s letter to CMS points to new research suggesting that how patients fill out surveys may be more related to patient characteristics than previously thought. The AHA cites an analysis by the Cleveland Clinic that found that when patients were sicker, patient satisfaction scores tended to decline. The researchers found the same thing among patients who were depressed.

Other studies have discovered that when patients feel strongly about the care they receive, they’re more likely to fill out and return a survey. Research also has found that even seemingly minor factors such as geographic region and time of the year can have an influence on the answers patients are likely to give on a patient satisfaction survey; Midwesterners seem more willing to give higher marks to hospitals than patients on the East Coast, and scores overall tend to decline slightly during the winter months.

It’s not clear what to make of all this information, nor how to use it effectively. Throw clinical measures into the picture and it becomes even more complex. Do we really need more patient surveys? Maybe what’s needed are better, more reliable measures and better ways of interpreting and understanding the data already being collected.

My weekend as an emergency patient and what I learned

If you want to see what health care is really like, there’s no better way than by becoming a patient yourself.

To paraphrase the wisdom of Dr. Seuss, “Oh, the things you’ll learn!”

The truth of this was recently hammered home for me during a weekend in the hospital that started with a Friday night trip to the emergency room, devolved into IV antibiotics, painkillers and surgery, and ended in a (minor) complication that luckily resolved on its own.

Who doesn’t benefit from undergoing a reality check every so often? It’s safe to say I encountered some old lessons that were reinforced and some “Aha!” moments that were new.

Here are a few of them, in no particular order of importance.

- Most of us pay no attention to our gallbladder until it unexpectedly stages a major rebellion. Then we notice very much indeed, especially when it becomes gangrenous.

- The word “patient-centered” can be rather nebulous. What does it mean, anyway, and how do you know patient-centered care when you see it? Here’s a clue: When the emergency room staff’s immediate response is to deal with your medical situation and worry later about seeing your health insurance card, that’s patient-centered.

- People in health care work really, really hard – days, evenings, nights, weekdays and weekends. It can be easy to judge their efforts by the amount of time they directly spend with you, the patient, but this is only the tip of the iceberg.

What you don’t see is the amount of time spent assessing the patient’s situation, reviewing lab results, communicating with the rest of the team, scheduling procedures, making decisions, following safe, evidence-based practices and documenting everything accurately in the medical record. When the behind-the-scenes action is done well, you likely are receiving better care and will have a better outcome, even though most of the work on your behalf will never be visible to you.

- When it’s your health at stake, it’s hard to be objective about costs. The effort has to start somewhere, though. Although physicians have a responsibility to avoid potentially harmful and expensive overtesting and overtreating, this is a two-way street. It needs to be OK for the doctor to say, “We’re not doing a CT scan because it’s unnecessary” and not meet with instant backlash from the patient. It needs to be OK for patients to let go of the I-want-you-to-do-everything security blanket and not fear they’re receiving substandard care. In health care, more does not automatically mean better.

However:

- Cost can’t be the sole consideration. Sometimes it’s OK to delay care and sometimes there’s a less expensive option. But sometimes the patient needs immediate care and sometimes the care needs to be aggressive. This, rather the goal of simply being as cheap as possible, is the real challenge in health care: providing the right care at the right time, not too much, not too little, not too soon and not too late.

- It’s good to ask questions but patient engagement is much more than this. It’s about listening, absorbing information, understanding how and why key decisions are being made, and seeing the big picture. It’s about communicating clearly and accurately. It’s about following directions. This is complex stuff, and a sudden hospitalization is not the best time to try to learn the language and behavior of patient engagement. Far better to start cultivating some of these skills when you’re well, rather than in the middle of an emergency.

- Who wants to be the patient who arrives at the emergency room and is forced to say, “I don’t have one” in response to the question, “Who’s your regular doctor?” You can probably get by, but your hospital visit will likely go more smoothly if you have a primary care doctor who knows you – or, at the very least, if you have a usual source of care.

- Being sick and hospitalized is disruptive, to families as well as to patients. It upsets the normal routine and adds unexpected stress. It can take several days, or several weeks, for everyone to regain their equilibrium. What patients and families don’t need is more frustration from a health care system that’s cumbersome, confusing to negotiate or slow to respond. Organizations that work to minimize this for patients are doing them a favor.

- Health care is organized around systems but it’s delivered by individuals and reinforced by organizational culture. Every one of those interactions counts, and every one of them helps define the line between having a good experience and having a bad experience. This is your shout-out, Rice Memorial Hospital and Affiliated Community Medical Centers, for knowing where that line should be. Bad experiences don’t happen by design but good experiences rarely happen by accident.

Additional reading: Choosing Wisely; Image Wisely; Costs of Care; Center for Advancing Health; minimally disruptive medicine.

Clinician, wash thy hands: When the patient becomes the enforcer

As an intensive care physician at a hospital in Saskatoon, Dr. Susan Shaw is both comfortable and confident in the health care setting. But when she recently had to bring her daughter to the emergency room with a broken arm, “I couldn’t do it,” she blogged recently. “I couldn’t ask the nurses and doctor who looked after my daughter to wash their hands.”

If she was uncomfortable speaking up, what about the average patient and family?

Dr. Shaw’s experience illustrates an important and often overlooked issue in patient safety: the gap between what patients and families are told to do – “Remind providers to wash their hands” – and their willingness and/or ability to actually do so.

Hand washing is one of the key ways clinicians can avoid spreading germs to their patients and reduce the risk of infections acquired in the hospital setting. Yet health care workers often are inconsistent at washing their hands. In various studies that have attempted to measure hand washing compliance, the rate at some hospitals has been estimated at an abysmal 25 to 30 percent. Some studies have measured especially low rates among doctors and medical students.

No wonder, then, that patients and families have been enlisted in the campaign to help clinicians do better. But is the public any more successful in the role of enforcer than hospitals, medical clinics and nursing homes have been? It seems the answer is no.

A study that appears this month in the Infection Control and Hospital Epidemiology journal queried 200 patients about their awareness of the importance of hand washing and whether they would feel comfortable reminding nurses and doctors to wash their hands. The patients, all of whom were considered at higher risk for infections such as methicillin-resistant staph, were highly aware of the need for hand washing – but only 14 percent said they had ever spoken up and asked a health care worker to wash their hands. Moreover, only about half said they wouldn’t feel awkward asking a doctor to wash his or her hands.

Why such a gap between theory and practice? Based on her own experience, Dr. Shaw suggests some reasons:

I was worried about making the doctor and nurses feel uncomfortable. I knew my daughter’s care wouldn’t be compromised if I upset the doctor and nurses. I just didn’t want any awkward feelings.

Readers weighed in with similar stories of being too uncomfortable to ask – or of asking and being met with a grudging response. One person wrote, “When I did ask a nurse if she had washed her hands, I was greeted with a look that said to me I had been labeled a ‘difficult family member.’”

Indeed, more than a few health care professionals believe it’s not the patient’s or family’s place to remind them to wash their hands, as a study published a few months ago in the Archives of Internal Medicine concluded. Nearly one-third of the doctors and nurses who were surveyed said it was inappropriate for patients and families to have a role in this, and almost two out of five said they wouldn’t wear a button or sticker urging patients to ask them if they washed their hands. The reasons they gave: 43 percent said a reminder from a patient or family member would make them feel guilty, 27 percent said it would be humiliating and about 25 percent said having to stop and wash their hands in response to prompting by the patient would take too much time.

It all begs the question: Is it effective or even realistic to expect patients to help enforce hand washing compliance?

Patient and family participation is difficult to accomplish when the culture of a health care organization doesn’t openly encourage and support it, Dr. Shaw wrote. “I think it comes down to creating a new norm where healthcare workers clearly give permission to patients to expect and demand hand hygiene be part of care each and every time. This means focusing on the culture, behaviours  and attitudes of us as healthcare providers.”

There’s an even larger issue here, though, and it’s this: Should hand hygiene be a shared responsibility between patients and clinicians, or does it rest first and foremost with the health care professionals?

Dr. Shaw reflects: “What I learned from my experience is that is the responsibility of the care provider and the healthcare system to do the right thing every time for every patient without expecting patients to be the inspectors of our work.”

Perhaps we shouldn’t be asking how to make it easier for patients and families to speak up and remind clinicians to wash their hands. Perhaps we should be asking instead how to get clinicians to wash their hands every time without needing to be reminded by patients.

Pleasing the patient vs. saying no

The patient in Dr. William P. Sullivan’s emergency room in suburban Chicago asked him to write a note excusing her from work because of an unsightly pimple on her nose. He said no, but later he wondered: Would the refusal, even if it were clinically and ethically appropriate, result in a ding to his department’s patient satisfaction rating?

“People get mad and you think, ‘Great. There goes another bad score,’” he said.

The anecdote is recounted in an American Medical News story that explores what seems to be a source of growing tension between doctors and patients: providing care that’s appropriate vs. pleasing the patient.

This is by no means a new issue. Doctors have always had to deal with patient expectations for care that are not necessarily warranted – antibiotics for a viral infection, for instance, or imaging tests with a low likelihood of yielding any useful information. What’s different these days is that physicians, and the organizations they work for, are increasingly being graded on patient satisfaction and paid accordingly.

From the American Medical News article:

Nearly two-thirds of hospitals, health systems and large physician groups have annual incentive plans for doctors, said an October 2011 report from the Hay Group, a Philadelphia-based management consulting firm. Sixty-two percent of those use patient-satisfaction metrics as a factor, up from 43% in 2010, said the survey of 182 health care organizations covering physicians in 144 medical specialties. Many set base pay lower and require doctors to meet performance metrics to earn hefty incentive pay.

“Bonuses of less than 5% don’t get anybody’s attention. Make it 5% or 10% or 15%, and that’s a sufficient financial opportunity to get your attention,” says Ron Seifert, vice president of the Hay Group. “We’re going to see more of this.”

To add to the motivation to get serious about patient satisfaction, Medicare also has begun paying for and publicly reporting performance measures. Patient satisfaction ratings account for 30 percent of the overall score; hospitals and physicians who fall short will see a percentage of their payments withheld. In other words, if patients are unhappy with the care they’re receiving, the penalty to providers will be a smaller paycheck.

Is patient satisfaction such a bad thing? It’s no secret that health care hasn’t always been well attuned to the patient’s perspective. In many ways, the emphasis on patient satisfaction is a long overdue effort to place the focus of health care where it belongs: on patients themselves. If providers consistently receive low scores from patients, it’s probably a sign that there are some issues in need of addressing. Tying it to financial incentives simply puts more skin in the game.

There’s valid debate, however, over the extent to which patient satisfaction ratings accurately reflect quality of care and how much they should influence the size of the provider’s paycheck. Are patients receiving quality care when the doctor agrees to their request for a CT scan for a headache, even though the imaging study is expensive, exposes the patient to radiation and is probably unnecessary? What about people who are likely to be unhappy regardless of the quality of the care they receive?

The connection between the doctor’s refusal of an inappropriate patient request and the likelihood of a low patient satisfaction score in fact is not entirely clear. That’s why a Wisconsin physician who specializes in addiction medicine is designing a study to examine this relationship more closely.

Dr. Aleksandra Zgierska, an assistant professor with the University of Wisconsin School of Medicine and Public Health, told American Medical News that decisions about prescribing narcotic pain medicine are a “day-to-day conundrum” in her practice. “The challenge is how do we discuss this with the patient so the patient doesn’t leave unhappy… Saying yes is easy. I know from firsthand experience that it’s very tempting,” she said.

Her study will look at the prescription of opioid pain medications and whether it correlates to patient satisfaction ratings.

Of the handful of other studies that have explored this issue, the one that has received the most attention appeared earlier this year in the Archives of Internal Medicine. It found that patients who gave the highest satisfaction ratings also had higher prescription drug costs, were more likely to be hospitalized and had worse outcomes – but the researchers could not definitively establish why this was the case. Although it might be assumed (and this indeed was the conclusion that many people seemed to draw from the study) that these patients were happier because they were receiving lots of prescriptions and hospital care, whether it was warranted or not, this remains just that: an assumption.

Turning down requests for inappropriate care may in fact not be the no-win situation that doctors fear, the American Medical News article suggests:

Experts agree that saying no does not have to mean an unhappy patient. They say that listening with empathy to a patient’s concerns, reviewing options in an evenhanded, nonjudgmental way, emphasizing the undue risks of nonbeneficial interventions, asking the patient to defer a decision, and even sitting down with the patient – instead of standing – can help.

It’s possible that many patients might actually welcome the discussion and ultimately leave the exam room feeling better informed about the decisions that were made.

The real issue seems to be one of balance. How can providers deliver quality care without compromising for the sake of a good patient satisfaction score? How can the patient experience be meaningfully valued without compromising other important measures for how providers ought to be paid? Regardless of the imperfect metrics that currently exist, these are questions that demand some thought.

Demolishing assumptions about patients and the PHR

When a medical practice in Florida decided to survey its patients about whether they’d be willing to use a personal health record offered by the practice, the doctors figured those most likely to say yes would be younger, well-educated and higher-income. They also hypothesized that the likely users would be more health-literate.

As it turned out, they were right – but only by half.

Income and schooling made no difference and neither did age. What seemed to matter most was the patient’s health literacy (or, to be more accurate, the patient’s perception of his or her level of health literacy). Among the patients in the survey who said they were willing to use a personal health record, 65 percent self-reported high health literacy. For those who weren’t willing to use a PHR, only 38 percent estimated their health literacy as high.

Overall, three out of four who responded to the survey said they’d be willing to adopt a personal health record if the medical practice made this service available to them.

The results of the survey appear in a recent edition of the Perspectives in Health Information Management journal, and they raise some interesting questions about the assumptions that often are made regarding patients and information technology – e.g. that older adults don’t go online or less-educated individuals aren’t very interested in a personal health record.

Even the researchers were a bit taken aback by their findings. Alice Noblin, Ph.D., an assistant professor and program director for the Health Informatics and Information Management Program at the University of Central Florida, told the AMA’s Medical News Today, “I knew going in that it was a high Medicaid population, so the demographics didn’t surprise me. But how they felt about the PHRs, yes, I thought they would be a lot more unwilling to get involved with it, but definitely, most of them were interested.”

To be sure, this was a small survey, involving only 562 patients at just one medical practice. Nor was it able to predict whether these patients would translate their willingness into action if an online personal health record became available to them.

One of the lessons, however, seems to be that the medical community shouldn’t take for granted that most of their patients are indifferent to technology – and they shouldn’t underestimate patient interest in PHRs either.

A couple of the more intriguing findings from the survey: More than half of the patients who participated in the survey had a high school education or less, yet 71 percent in this group said they were willing to use a personal health record. And although nearly 60 percent of the respondents were in the lowest income category ($20,000 a year or less), three-fourths of them were interested in using a PHR. Most of the survey participants also were middle-aged and older.

Now for another statistic: Nationally, use of personal health records has been placed at around 7 percent of the total patient population – a very low figure when you consider the extent to which people are using information technology in other areas of their lives.

It’s not clear why there hasn’t been more uptake. Some of this can be traced to people’s concerns about privacy and security; unlike the electronic medical records maintained by hospitals and medical practices, the personal health record is maintained by patients themselves. Some of it could be due to the amount of hunting and gathering often required for consumers to create a PHR that’s complete and accurate. Actual use also somewhat depends on the PHR’s design and whether it’s easy or cumbersome.

But much of it simply might be a result of a general lack of awareness and patient education. Would it help if medical practices took a greater lead in discussing and promoting the PHR with their patients?

This particular survey was commissioned by a medical practice that wanted to offer a PHR and wanted to gather some data before making a final decision. Although many health care professionals remain ambivalent about how much information should be placed in the hands of patients, this small study suggests patients are more receptive than providers might think – and furthermore, that patient interest cuts across the demographics of age, income and education. It remains to be seen how the gap between what patients say they want and what providers assume they want can somehow be narrowed.

Sharing the doctor’s notes

The verdict on the Open Notes Project is in, and it’s everything proponents had hoped for: Sharing the doctor’s notes with patients can lead to better care.

I’ve been following the Open Notes Project with a great deal of interest. Although there’s been an increasing push for consumers to have more access to their medical record, few studies have ever examined how this could change the patient experience or the doctor-patient relationship. Even less is known about what might happen when patients are given full access to the doctor’s office notes, wherein observations, judgments, possible diagnoses and the doctor’s thought processes are contained.

Would patients find the information useful? Would it improve their care? Or would it cause undue worry or force physicians to spend more time explaining to patients and reassuring them?

The Open Notes Project, which started in 2010, is an attempt to find out. Three primary care practices, 105 doctors and 13,500 patients in three states – Massachusetts, Pennsylvania and Washington – were involved in the study, which lasted one year.

The results were reported in the Annals of Internal Medicine last week, and it was overwhelmingly clear: Patients liked being able to access the notes, they reported greater engagement in their care, and the vast majority wanted it to continue.

Most looked at the doctor’s notes at least once during the course of the study. Between 60 and 78 percent of those taking medications said it helped increase their adherence, and most also reported feeling more in control of their care.

Although some critics (mostly doctors) worry that allowing patients to see their office notes could be confusing, upsetting or possibly offensive, that wasn’t the case with the Open Notes Project. Fewer than 10 percent of the patients at each of the study sites reported experiencing this.

Moreover, it wasn’t the time sink that doctors may have feared. Fewer than 10 percent of the participating primary care physicians saw the length of the patient visit increase or had to spend more time answering patients’ questions outside the visit. Nor was there any change in the volume of electronic messages from patients. More significantly, none of the participating physicians opted out of Open Notes once the study was completed.

The time factor for physicians is very real. No matter how much patients might push for change, there’s little incentive for a medical practice to adopt new approaches if the result ends up being more time-consuming. The Open Notes study might not put this fear entirely to rest, but it provides some data to suggest that open access to the medical record is less burdensome than critics think.

The study’s authors concluded:

Patients accessed visit notes frequently, a large majority reported clinically relevant benefits and minimal concerns, and virtually all patients wanted the practice to continue. With doctors experiencing no more than a modest effect on their work lives, open notes seem worthy of widespread adoption.

In fact, more than half of patients felt they should be allowed to add their own comments to the doctor’s notes, and one in three believed they should be allowed to approve the contents of the notes before they were finalized. Not surprisingly, the majority of the doctors (85 to 96 percent) disagreed, which raises the question: To whom do the notes, belong – the doctor or the patient?

There’s a great deal of debate over how much power patients should have. One of the arenas in which the battle is waged is access to the medical record. After all, the record contains information that’s intimate and subjective; is it the doctor’s prerogative to keep sole control?

Some would say yes. Dr. Edwin Leap, an emergency-room doctor and blogger, recently lamented the difficulty of recording the naked truth. He wonders: Instead of writing dispassionately about a 35-year-old man who wrecked his moped while drunk and is now in the ER complaining about a superficial scratch, why can’t he document, “This enormous whining man-child is drunk all of the time, lost his license, and is now playing the pain card to obtain yet more mind-altering substances, which he will either abuse or sell from his mother’s basement until he is struck and killed by a large truck or slips into an Oxycodone/Xanax/moonshine coma and ceases all respiration”?

It might be truthful, at least according to the doctor’s perspective, but how would it play if the patient read that in his record? And how much of this observation is accurate vs. a subjective judgment on the part of the physician? It’s interesting to note that among the physicians who participated in the Open Notes pilot project, a bit of self-censoring may have taken place. Many reported that they made some changes in what they document and that they spent more time writing their notes.

While this may be a concern, it’s not significant enough to conclude that opening up the doctor’s notebook to patients is a bad idea, writes Michael Meltsner, who penned an accompanying patient perspective to the Open Notes study in the Annals of Internal Medicine.

In fact, the clear value outweighs any of the negatives, Meltsner concludes. Patients aren’t served well when information is kept from them, he writes. Although the truth may cause anxiety, “pain and anxiety are part of the human condition and are as likely to be produced by a sense of ignorance and powerlessness as by knowledge. The difference turns on who decides.”

Moreover, giving patients access to their full medical record can help them become more engaged in their care and more accountable for their health, Meltsner writes. “The benefits that come from a greater flow of information hold considerable promise for creating a healthier society, a result that is plainly worth the costs.”

Read more about this issue: Letting patients read the doctor’s notes; Open notes and what else is new?; Open Notes: The results are in.

Show me my test results

Many people are perfectly satisfied with having their doctor communicate the results of medical tests and explain what they mean. Others want the results, like, right now instead of waiting for the information to first be channeled through the doctor.

Which way is best?

Once upon a time, there wasn’t much choice. The way the system worked was that the doctor reviewed the test results first, then shared them with the patient. Now all of this is changing, propelled by a growing desire by many people for direct access to their medical information. It’s being further fueled by a U.S. Department of Health and Human Services proposal to expand direct consumer access to laboratory test results, an option that’s currently only allowed in a handful of states, to all U.S. health consumers.

There’s considerable debate, however, over whether this is good or bad, and how the disclosure of test results should best be handled.

By all means, give patients access – but there should be guidance by a physician in order to understand what the test results mean, is the position of uberblogger Dr. Kevin Pho, who recently wrote on the subject for USA Today.

Dr. Pho writes:

Patients should have access to their lab tests. But it is crucial that a medical professional explains the results. Raw numbers without the benefit of context can also cause patient anxiety. Some abnormal results are due to chance or lab errors. Other results can be a normal variation for that individual patient. Many lab results are misleading and not indicative of any disease. Patients often assume the worst, so viewing results alone might cause unnecessary alarm.

He has a point. It’s often difficult for the layperson to sort through the numbers and try to figure out which, if any, are significant. People can become upset by what they see, and it isn’t always easy to allay their fears over something that has been misunderstood or misinterpreted.

On the other hand, why not give patients some credit for being able to comprehend their test results and deal with whatever the emotional fallout might be?

Barbara Bronson Gray, a registered nurse who blogs at BodBoss, holds the latter view. In a recent blog entry, she demolishes all the reasons physicians often give in favor of maintaining the status quo.

Patients might become unduly anxious by their test results. “We’re grown ups. We deal with good and not-so-good information all the time. No one holds my hand when I see what happened to the stock market on a given day.”

Patients won’t understand the results. “Try me. If I don’t understand, I won’t freak out. I’ll just do some research or ask you.”

Patients will take up too much of the doctor’s time asking questions about their lab results. “It doesn’t really take very long to explain what these things mean.”

The debate over direct and immediate access to lab results is an echo of an even larger conversation about access to the complete medical record. It’s a power struggle over information – who has it, who controls it, who decides.

Health care practitioners are being forced to rethink how they’ve traditionally regarded the patient’s medical information. Simply communicating to someone that their test results are “normal” doesn’t (and shouldn’t) really cut it anymore. And given the amount of health information available online these days and people’s willingness to pursue it, the assertion that patients don’t have what it takes to understand their test results is beginning to ring rather hollow.

From the clinician’s point of view, there may be problems and nuances about giving people direct access to their test results – logistics, for instance, or timing – that make this somewhat more complicated than a straightforward case of “gimme my results.” There’s a fine line, however, between honest concern over whether the public is ready for this and plain old-fashioned paternalism. The real question seems to be where that line should be drawn.

What do readers think? Do you want direct, immediate access to your test results or would you rather receive them from the doctor?