Understanding risk: the patient’s perspective

JAMA notes that just 11% of more than 2,700 recommendations approved by cardiologists for treating heart patients are supported by high-level scientific evidence. And the BMJ weighs in with the sobering statistic that a mere 13% of medical treatments are known to be beneficial, while 48% are of unknown effectiveness.

A new book, Dance With Chance, cites these statistics and sheds some light on the phenomenon. It starts with the premise that medicine is not an exact science. The authors then go on to debunk certain conventional wisdoms about health care such as what they call the ‘cholesterol myth.’

Some cholesterol-lowering drugs are not only ineffective, they say, but may even increase the risk of heart attacks while also producing serious, negative side effects. They also cite the fact that in southwest France, famous for producing the high-cholesterol delicacy foie gras and where the denizens consume copious amounts of butter and other fatty products, deaths from cardiovascular disease are 39.8 per 100,000 as opposed to 196.5 per 100,000 in the US. And salt? JAMA has apparently suggested that ‘restricting dietary sodium intake’ has only a minimal effect on blood pressure. Empirical evidence, they say, reveals no difference in life expectancy between those who undergo annual medical check-ups than those who don’t.

So does the book offer any prescriptions? The authors claim: “pressures from doctors, the media, the pharmaceutical industry, and society in general are sufficient to explain why the apparent certainty of medical science is just another illusion.”

As for the inexactitude of medicine, one need look no further than the PSA screening for prostate cancer, which produces a substantial number of false positives, meaning that many men with high levels have no cancer but might undergo unnecessary prostatectomy or other invasive procedures.

So, how do patients perceive risk? For example, do they really discern whether, upon the discovery of prostate cancer, the options for surgery or for radiation therapy are preferred? In that example, the patient’s choice of treatment can be strongly influenced by whether the risks are presented in terms of survival data or mortality data. Another good example is the uproar over the change in recommendations over Pap smears and breast cancer screening by US health authorities. How does a patient understand the difference between a one-in-400 versus a one-in-2800 risk of getting cancer, not to mention the added risk of radiation exposure?

In an extensive review of this issue in the journal Quality and Safety in Health Care, AJ Lloyd notes that people’s decision-making is not strictly rational but rather is subject to systematic biases. People employ simplifying heuristics in judgment and decision-making, says Lloyd, by coding risks qualitatively as simply ‘dangerous’ or ‘safe’ rather than retaining quantitative information (eg, 15% or 8.9 per 1000). Patients also commonly view hazards as more risky for other people than for themselves. He concludes that many patients have poor comprehension and recall of risk information.

The irrationality of interpreting risk was well illustrated in the aftermath of the September 11, 2001 terrorist attacks. While the deaths from those attacks were estimated to be 3000, there was an add-on death rate of 5,000 Americans resulting from a widespread move away from air travel (in which overall fatalities are minimal) to road travel (in which fatalities are thousands of times higher).

The Dance With Chance authors might be a bit cavalier in advising, “If you feel good, there’s no need to take a test to see if you’ve got an illness.” Nonetheless, they join forces with Jerome Groopman, author of How Doctors Think in suggesting a partnership between patient and doctor. In such an arrangement, patients might ask their physicians about the benefits and dangers of a given procedure, what the alternatives might be, what the side effects are of any associated drugs, and what the outcome is likely to be from doing nothing – and finally what’s it likely to cost and will the insurance cover it.

As Alexis Skoufalos, EdD, associate dean for continuing education at Thomas Jefferson University’s School of Population Health, puts it: “Comparative effectiveness is at the heart of that comment. A lot has to do with making sure that the patient is actively involved in decision-making. Communication with patients, their family members, and caregivers regarding the options, etc, is important.”

But AJ Lloyd notes: “In the present context, risk is considered to be the product of the probability of an outcome and the severity of that outcome. Clearly understanding both aspects of risks are crucial when patients are asked to make decisions about their treatment.” In other words, it’s not enough to understand the risk of a heart attack; a patient also needs to realize what a heart attack is and how it will affect his life, in the short- and long-term.

Lloyd AJ. I. Communicating and understanding risk: The extent of patients’ understanding of the risk of treatments. Qual Health Care 2001;10:i14-i18. doi:10.1136/qhc.0100014.

Makridakis S, Hogarth R, Gaba. Dance With Chance. Oneworld Publications; 2009.

David Woods, PhD is CEO of BioScriptUS and former editor of Health Outcomes Communicator.

Communicating complexity and understanding risk: whose responsibility is it?

I feel badly for today’s health care consumer. Our celebrated Information Age has exploded into Information Hysteria for many would-be patients – H1N1/swine flu, SARS, bird flu, vaccines and autism. So many conditions are deemed health care crises.

And what about the plethora of ‘new studies’ that herald conflicting results to what is currently considered to be gold-standard evidence-based medicine — withdrawals from the market of widely-used drugs due to cardiovascular risk, analyses showing that antidepressants (some of the most widely-prescribed drugs in the world) may be barely more effective than placebo, to name a few.

I have the luxury of being paid to learn about medicine – to interview medical opinion leaders, to read about the latest clinical trial report, drug development, diagnostic technique, or technological innovation. I have taken courses in statistics and trained as a scientist. I have the time and at least some training to consider these issues. Today’s patient, by contrast, faces an almost daily information tsunami, without the benefit of a scientific education and the bonus of an income for doing so. And we are asked to make possibly life-changing decisions based on bullet points, tweets, and soundbites.

Rarely are arguments simply black or white, right or wrong, either/or. Yet, many of today’s big issues are presented this way – war, bank bailouts, vaccines. Amidst all the shouting and dramatic headlines, I fear we are losing the ability to consider nuanced arguments. Nigel Hawkes writes in the BMJ: “Was the World Health Organization premature in declaring a pandemic? Given that swine flu was spreading fast, worldwide, that hardly seems a fair charge to make. But perhaps the definitions did not allow enough flexibility to distinguish between a lethal pandemic and a mild one.”

Thus, very few issues in life are clear-cut, yet the decision does become either-or because ultimately a decision has to be made. Where does this leave the patient? David Woods, PhD looks at how patients perceive the concept of risk (offering some surprising statistics of his own) and the role health economists and outcomes researchers play in communicating complexity. Click here to read his article.

Hawkes N. Why we went over the top in the swine flu battle. BMJ 2010;340:c789

Email Etiquette

You’ve got mail — and lots of it! Every day, 167 messages whoosh in and out of the average corporate email account, according to the latest statistics from The Radicati Group. No surprise, then, that email eats up a quarter of every workday.

You can make those messages more effective, and polish your image in the process, by keeping a few tips in mind.

Follow Corporate Policy

Start by following your workplace rules. Is it kosher to send personal emails from your corporate account? Should you include a legal disclaimer at the end of every message? What are the guidelines about forwarding jokes, photos, and the link to that YouTube video of stupid dog tricks?

Keep It Short — But Clear

When it comes to email, shorter is better, especially if it might be read on the eye-squintingly small screen of a Blackberry or iPhone. And what’s true for the body of the email is just as true for the heading — don’t make your recipients scroll to find out what’s in store for them.

Clarity trumps brevity, however. By spelling out exactly what you’d like the recipient to do and including all the relevant details, you’ll avoid several rounds of back and forth to clarify what your original message meant.

And because the person reading it won’t be able to pick up on your body language or tone of voice, take a few minutes to make sure what you’ve written can’t be misinterpreted.

Project a Professional Image

A little polish goes a long way. Proofread your message before it goes out the door. Give text-messaging-style abbreviations a miss, along with background images, animated emoticons, and fancy fonts, especially if your recipient is using a Blackberry or iPhone.

A friendly salutation and closing takes up very little space but pays big dividends, as does the liberal use of ‘please’ and ‘thank you.’

Finally, a signature line that includes your contact information makes it easy for recipients to contact you off-line if necessary. Keep it short, though; a few lines should do the job.

Address It Right

Beware: it can be very easy to select Joe Boss instead of Joe Buddy from your list of contacts. Always double-check the address before you hit Send to make sure those confidential numbers really are going to the right person.

Copy with Courtesy

Does more than one person need to see your message? When you’re sending an email to a group of people who don’t know one another, use Bcc to protect their privacy. Conversely, choose the Cc function for people who need to interact with one another. If you’re responding to a cc’d message, hit Reply All to keep everyone in the loop.

Master the Art of Attachments

Ever had to follow up an email with, ‘Oops — here’s the file I meant to send’? Get in the habit of attaching that report, statistical analysis, or meeting agenda before you type the cover message. The more messages you send, the more it clutters up someone else’s inbox.

Big attachments can create headaches at the other end, however, so check first before you send off a 10MB file, and make sure your recipient has the right software to open it. If not, there are several free programs that allow you to send large files, such as www.yousendit.com.

Respond Promptly

Too busy to reply within a day or two? A brief message will reassure senders that their message hasn’t been caught by spam filters or lost in cyberspace. (And speaking of spam, it’s a wise move to check your filters regularly for legitimate emails that were snagged because of a suspicious word or phrase.)

If you’re going to be away from the office without access to email, an autorespond message lets people know when they can expect to hear from you. A word of caution, however: if you belong to any list serves (ie, automated electronic mailing lists), temporarily unsubscribe before you set your autoresponder. You don’t want to deluge your listmates with your vacation notice in response to every posting!

A Word About Privacy

Email can be forwarded — intentionally or not — with the click of a button, so use discretion if you’re criticizing a colleague or complaining about the latest corporate policy. And if you’re sending email on company time or using company equipment, assume that your boss may review what you’ve sent.

Saying it in cyberspace: a guide to successful blogging and twittering

Got opinions to share? Insights? Information? The Web 2.0 revolution makes it easy to get the word out, build a professional profile, and make connections.

If you don’t want space restrictions to cramp your style, free platforms like WordPress or Blogger let you post your thoughts in a cyber-diary format. Looking for a shorter, more interactive way to communicate? Use Twitter to send out brief ‘tweets’ of information, akin to those surreptitious notes you used to pass to friends during history class.

Ready to start? Keep these tips in mind.

Upfront advice

• Decide what niche you want to fill. Don’t twitter or blog just for the sake of seeing your name online. Instead, become a source your readers or followers value, whether it’s for the latest industry news, a quick hit of humour, or your take on emerging trends.

• Get the go-ahead from your employer if you plan to talk shop online. Find out if there’s a corporate policy for employees who twitter or blog. No policy? Use common sense. Don’t disclose confidential information, be cautious in dishing out criticism, and carefully consider the impact your words will have on your company, its clients, and its shareholders.

• Be professional. Blogging and twittering may be relatively casual forms of communication, but typos, bad grammar, and text-messaging abbreviations won’t impress readers. Similarly, cast a critical eye at your profile. What kind of image does your photo or avatar project? What about your bio?

• Provide full disclosure. Are you representing a particular company or organisation? Being paid to hype a particular product? Make that clear in your profile.

• Use good judgement. Remember that what you publish may end up being read by your boss, your company’s competitors, your local reporter or your mother.

Blogging basics

• Set reasonable goals for how frequently you post, and then follow through. If your readers have come to expect daily posts, they’ll feel miffed if a week goes by without something fresh.

• Pay attention to presentation. A dense wall of text looks intimidating, so use shorter paragraphs to create white space. Is your posting more than 300 words? Subheadings can help to break things up.

• Respect copyright. Just because a photo is online doesn’t mean you can use it without permission. Copyright also applies to words. While it’s okay to quote someone briefly (with attribution), never reproduce more than a few lines of an article without the author’s consent.

• Include relevant links. Give credit where credit is due — and enable your readers to get more details — by linking to any bloggers, websites and articles you mention.

• Turn your blog into a dialogue with readers by enabling comments. If you want to screen them before they’re published, check the ‘moderation’ box in your blog settings, and post your policy as well. Won’t publish anything containing obscenities, for example? Let readers know.

• Follow good journalism practices. Check your facts, name your sources, and avoid anything that might be considered libel, hate literature, or a personal attack.

Twitter tips

• Decide how public you want to be. The default setting will make your tweets visible to anyone. Alternatively, you can restrict them to the people who ‘follow’ you — those who sign up to receive your tweets — by clicking the ‘protect my updates’ option under your account settings.

• Similarly, master the distinction between ‘@’ messages, which are targeted to a specific person but visible to others, and direct messages, which are private communications with a particular follower.

• Keep your tweets short. Twitter sets a limit of just 140 characters per message. That doesn’t leave lots of room for context, so re-read your tweet before you hit ‘update’ to make sure it can’t be misinterpreted.

• Don’t swamp your followers with constant tweets. You’ll quickly turn people off if you deluge them with hourly updates.

• Consider including hash tags/pound signs to make your tweet easily searchable.  Twittering about recent industry developments, for example? Include the hash/pound sign (#) followed by ‘pharma.’

• Be selective in who you follow. Time is a precious commodity, so don’t feel obliged to follow everyone who follows you. If you decide to stop following someone, no apology is necessary — unless it’s family or a close friend, of course.

Coping with information overload

A little more than a decade ago, if you’d used words like google, blog, spam, email, internet, iPod, PDA, instant messaging, Blackberry (unless referring to the fruit) and e-zines, people wouldn’t have had a clue what you were talking about. In fact, this e-zine would have been almost impossible to produce… with its “home” in the United Kingdom and its editor in the United States.

Today, it’s not just that those items simply exist, but that they are growing exponentially – and creating information overload.

Consider for example a study by Professor Peter Lyman of the School of Information Management and Systems at the University of California, Berkeley; and Professor Hal R. Varian, of that University’s School of Information.

They note that the amount of new information stored on paper, film, and magnetic and optical media has doubled in the past three years. Instant messaging generates 5 billion messages a day, they say, and email generates 31 billion communications annually, or double the number in 2003. That’s 400,000 Terabytes of new information worldwide: a mere 2 Terabytes represents the content of an entire academic research library.

And it’s not that all of this overload has simply replaced paper. The researchers note that it takes 786 million trees to produce the world’s paper supply. Not only that, but more than 90% goes to produce office documents. Worse, it’s said that the average office worker is interrupted every three minutes by a phone call or an email.

How to cope with this avalanche of information without being buried in it?
There are several strategies for getting the information you want, and avoiding what gets in the way of finding it:

• Have a clear purpose
• Plan ahead
• Prioritise
• Don’t be tempted to go down blind alleys
• Eliminate noise and interruptions
• Use email filters
• Use search tools effectively
• Use abstracts, synopses, and executive summaries where possible.

Bruce DeBonis, a senior executive with international financial and advisory services company PriceWaterhouseCoopers, has a personal approach to information overload: “I tell the people who report to me,” he says, “about email and voicemail etiquette: put the action item in subject heading; use voicemail more. Pick up the phone and call; don’t be phone-phobic. Email can be cumbersome if it’s not streamlined and specific.”

Remember Sisyphus, who was forced by the gods to push a huge rock up towards a mountain top whence it would roll back down again? Don’t let information overload get you down. Keep focused and keep cool!

How to use visual images when explaining QALYs

Before lecturing on quality adjusted life years (QALYs) you should carefully consider the most appropriate way to educate an audience.

The most obvious visual image related to QALYs is the graph of health utility over time. However, health economists called upon to give one-shot lectures to clinical audiences should not limit the visual images they employ to these standard graphs. The use of visual images relevant to clinicians’ day-to-day professional lives can facilitate communication.

Imagine discussing a series of syringes, flasks, and vats to illustrate the aggregation health-related quality of life over time and among individuals.

To begin illustrating the concept of measuring health related quality of life, you could ask members of a clinical audience to imagine filling a 10mL syringe in proportion to their personal feeling about health-related quality of life on the day of the lecture. When comparing different individuals, syringes filled with more liquid represent a higher quality of life for that individual.

To characterise health-related quality of life over a year, you might ask members of your audience to imagine filling a syringe each day. At the end of the year, the contents of all 365 syringes are emptied into a single flask that measures 3.65L of liquid when full.

The number of QALYs experienced by the individual in a year would be the fraction of the flask that is full. Many different sequences of syringe levels (i.e. daily quality of life) can yield the same total amount of liquid after a year.

The calculation of QALYs cannot distinguish among these sequences. The fact that the sequence of health-related quality of life experiences during a year does not affect the QALYs that are calculated is the key insight regarding aggregation over time for an individual.

Then, imagine a population of 100 individuals, each of whom has filled some fraction of a 3.65L flask. The QALYs experienced by the population (an important component of a cost-effectiveness analysis) can be measured by emptying all 3.65L flasks into a 365L vat.

The fraction of the vat that is full measures the average QALYs experienced. The key insight for aggregation at this stage is that the distribution of QALYs among members of the population is not considered.

An economist who wants to facilitate understanding of cost-effectiveness and QALYs should take advantage of the opportunity to be creative, or even light-hearted, when choosing visual images to use in a lecture. The images must meet two primary criteria: being appreciated by the audience and being easily explained by the economist.

It’s not what you say, but how you say it

by Clare Gurton

Being assertive is crucial for success in work; in meetings, giving presentations or talks and on paper. It really is not what you say, but how you say it that counts. Here are some tips to help you develop assertive language:

• Use familiar language
• Use formal conversational or written language
• Avoid obscure language
• Avoid jargon unless you are certain the readers will understand it
• Use concise language
• Remember that wordy expressions can hide major points
• Be concise: pare sentences as much as possible without losing the meaning
• Instead of general and vague phrases, be specific
• Use correct language
• Be accurate; accuracy requires correct word usage
• Use moderation; avoid over-generalisations
• Correct grammar, punctuation and spelling is imperative. Errors create negative impressions and cause you to lose credibility
• Use persuasive language
• Strong verbs – use direct action-oriented verbs and verb phrases
• Assertive phrasing – eliminate deferential words and phrases
• Use constructive language
• Take a positive approach; avoid language that invites negative responses

Assertive body language is also crucial in meetings or when giving presentations. This will help to centre you and to ensure your audience connects with what you are saying. There are several elements involved in assertive body language:

• Your voice. You may be considered non-assertive if your voice is weak, hesitant, soft, or wavering, while a tense, loud, shaky, or demanding voice will demonstrate aggression. Aim for an assertive voice: firm, relaxed, well modulated.

• Your eyes. Non-assertive eyes may be averted or downcast, while aggressive eyes can be narrowed, cold, or staring. Keep your eyes open, frank, and direct.

• Your posture. Non-assertive posture is often stooped, while an aggressive person may stand stiff, with hands on hips and feet apart. Assertive posture is erect, relaxed, well balanced.

• Your hands. Non-assertive hands are fidgety, fluttery, or clammy, while someone who is showing aggression might keep fists clenched and make abrupt gestures or point a lot. An assertive person will use relaxed appropriate hand movements.

Let’s hear it for sound listening skills

Of the principal elements in communication – reading, speaking, writing and listening – listening is learned first, is used most through life, and is taught least through all the years of schooling. In his book How to Speak, How to Listen, Mortimer Adler says that it is utterly amazing how people generally assume that the ability to listen well is a natural gift requiring no training. “Deficiencies in listening and the ensuing failures in communication,” says Adler, “are a major source of wasted time, ineffective operation, and miscarried plans and decisions.”

Among the reasons that people either don’t listen or don’t really catch what’s being said are:

• impatience, a low threshold for boredom, and irritation when speakers don’t provide a “lead paragraph” – a clear focal point – or when they engage in the sort of self-indulgent long-windedness that Benjamin Disraeli described as “tracing the steam engine always back to the kettle”;

• paying more attention to a speaker’s mannerisms while allowing one’s mind to wander;

• overreacting to certain words or phrases that arouse adverse emotional responses; or

• just daydreaming.

Listening, Adler believes, requires penetrating through the words to the thoughts that lie behind them. It calls for sifting what’s important from what isn’t; it requires perceiving as early as possible the focus of what is being said.
It could be argued that if people spoke more logically, grammatically and colourfully than most of us do, listening would be easier. But that’s rather like saying that astronomy would be more rewarding if there were never any clouds.

Philadelphia Inquirer columnist Lona O’Connor lists three types of listening:

• Supportive: making speakers comfortable enough to say what’s on their mind
• Active: asking questions and advancing the conversation
• Analytical: figuring out what the information means and what to do about it.

Can you improve your listening skills? Your future could depend on it. This is especially true for healthcare professionals who, by turning an intentionally deaf ear to what’s being said or by failing to detect nuance, may place their careers in jeopardy. It’s estimated that more than half of all malpractice litigation has its origins in garbled communication and misunderstanding.

Let’s hear it!