Posts tagged ‘information literacy’
Gary Schwitzer is Publisher of HealthNewsReview.org, where he and his team grade daily health news coverage. He works to improve health journalism with the goal of improving consumer knowledge and decision-making. He was the founding editor-in-chief of the MayoClinic.com site. While his guest lecture at Web Strategies for Health Communication was on health news reporting, I realized that his review criteria seemed equally applicable to any health content and asked him if he agreed:
LG: You critique health news stories and provide guidelines for health journalists; do your guidelines apply to all health writing using the web and social media?
GS: I think our ten criteria could be applied to any form of health communication, perhaps including one’s interaction with one’s own caregiver. They may be even more helpful or relevant for health writing on the web or in social media, where standards may sometimes dip a bit.
LG: Do you have recommendations about how to create titles that accurately reflect content yet are enticing? Looking at recent titles of articles you rated, some are descriptive but some are more sensationalistic, almost what you would expect to see on the cover of Cosmo.
GS: We often see solid reporting that is undercut by a sensational headline. Good journalism, good writing, good communication doesn’t need the sensational title or headline to “sell” it. In TV news, for example, it’s not only the headline that matters but the “tease,” the promotion, the visuals, the introduction. Someone with a publishing concern must take responsibility for the total package of what is communicated.
LG: What about how to write accurate yet enticing, snippets of articles? This is important when the entire text doesn’t appear on a home page and is increasingly important in social media when the number of characters may be limited.
GS: It is possible to convey accurately with balance and with relative completeness even in TV news or in a web “abstract” or in social media. Of course, with the latter, the use of links to flesh out the “completeness” is not only possible but desirable. I learned how to do a pretty good job even within the constraints of TV news during my career and am now trying to learn to do so even with the 140-character constraints of Twitter.
LG: What advice do you have for health communicators who are creating web or social media content?
GS: Content is still king. Substance over flash. Steak over sizzle. There is a tremendous responsibility to get things right on these vital health and health care topics. Increasingly, I see the value and importance of being correct – perhaps at the expense of not being first. We need to understand that there is true harm that can be done with inaccurate, imbalanced, incomplete communication on health care topics. Our first and greatest responsibility is to our readers – not to the perceived style demands of our medium or format within which we work.
When I told Avi, an editor in Dallas, about my health research, he responded, “It’s coincidental that I had an Internet health moment this week.” Avi had switched to a generic SSRI anti-depressant from a name-brand and was feeling poorly.
The Web sites Avi used were the FDA, a mental-health news clearinghouse/portal, and, a respected online forum for patients using anti-depressants. He went on to say that this “online research showed a high probability that the nasty symptoms I’ve experienced the last couple of weeks are due to my switching from a name-brand drug to a generic version.”
Avi continued, “With the Web information in hand, I talked to my doc and the pharmacist, went back to my old med, and, today, I’m feeling much, much better. Did I need the Web for this? Not necessarily; a phone call to my doc may have done the same thing. What the Web did was immediately confirm the strong probability between the generic med and my symptoms, which allowed me to start the chain of events necessary to fix the problem.”
I asked Avi why he turned to the Web first. He said, “It’s a convenient, fast filter/information source, and I trust my Web-research skills. Moreover, I didn’t stop after doing my surfing; it was just a first pass at the information available before I called my doc, to whom I didn’t say, ‘Hey, all these blokes out on the Web are going through hell with this generic, get me off of this stuff!’ Rather, I first had a discussion with my pharmacist to find out if she had had similar feedback from her patients on the same drug. Then, with information from three serious, medically respected Web sites and my pharmacist’s comments in hand, I called my doc and simply asked him if there could be a causal link between my switch to the generic and my symptoms. If he had said no, I would have cited the evidence I had in hand that appeared to suggest a link. But, he didn’t, so I didn’t have to go beyond the initial question.”
Avi concluded, “So, there’s my story. Not very dramatic.” But it exemplifies both the empowered healthcare consumer who trusted his information literacy skills, and also the lack of disclosure about the use of the Internet that so frequently occurs between patients and doctors. (A.G., private correspondence, 8/5/08 and 8/6/08).
Hongtu Chen and I, with some inspiration from Larry Prusack, just finished a journal paper on The Impact of the Democratization of Health Information on Elders. Here is the abstract:
Thanks to the Internet, elders have access to an unprecedented amount of health information about diseases and medications. Much of this is information previously only available to medical professionals. The ease of locating – or the democratization of – health information has benefits and drawbacks. The benefits to elders are the ability to learn about all aspects of health whenever they choose. The drawbacks are that, due to lack of medical training and poor health literacy, they may not be able to effectively discern the quality of, comprehend, and use what they find online, and, worse, may rely on what they find online instead of seeking professional medical care.
In yesterday’s talk, Patient, Heal Thyself: How to Succeed with Online Consumer Health Sites, I started off by asking if I should lose 10 lbs. on the Atkins diet or by joining Weight Watchers. Melanie Zibit answered that I would lose the weight more slowly with Weight Watchers but would be more likely to keep it off. Most people agreed that this was good advice (the wisdom of crowds). I then asked if knowing anything about the weight loss experience or medical credentials of the advice-giver would have an impact, which people agreed with. Using sites like Amazon.com, a book-purchasing decision can be made based on the wisdom of crowds (ranking and ratings), expert opinions (from professional reviewers or well-known people in the field), or other readers (whose reviews are themselves rated). But a poor book choice has few ramifications, while health decisions can have severe consequences.
Many people get weight loss or any other type of health advice from strangers or friends, often knowing little about their experience or credentials; from books or magazines (every celebrity seems to have a weight loss secret or problem, based on a perusal at the supermarket check-out); from ads in magazines or television; or even from spam (I get frequent offer for weight loss drugs without a doctor’s prescription). People also learn about weight loss online – 49% of U.S. internet users search for diet or nutrition advice and 80% search for health advice. A search for “weight loss” returned 75,000,000 results, with “diet” and “fat” getting even more, and “weight” returning 1/2 billion results! Weight loss is certainly a common concern, but searches on other health topics also yield millions of results.
The results range from the Mayo Clinic to herbal remedies “As Seen on Oprah”. Most health seekers gather “health advice online without consistently examining the quality indicators of the information they find“. Information and health literacy impact the search results people select and the sites they use. Poor information literacy skills impact people’s ability to discern the quality of information. Poor health literacy skills – the lack of understanding about health coupled with the emotional burden of health concerns – make it far too easy for people to desire and seek magical cures or easy solutions. There are few reliable indications of quality; the only “Good Housekeeping Seal of Approval” in health is HONcode.
Sites vary in their usefulness, accuracy, branding, presence of advertising, and amount of interactivity, to name a few attributes. The most heavily used sites are WebMD.com and RevolutionHealth.com, both covering all diseases and conditions. Other sites are more specialized, such as Leroy Sievers’ heavily commented cancer blog at NPR.org, the very focused discussions on the Road Back Foundation bulletin board, and the well-segmented and very active community message boards at Weightwatchers.com. There are millions more examples, well-designed and dreadful, heavily used and ghost towns, frequently updated and unchanged in 10 years.
With consumer-directed care, patients are being asked to play a greater role in their health care. Providers are putting considerable effort into Electronic Health Records, Pay-for-Performance – countless initiatives to improve quality, reduce errors, and cut costs. But when a someone lies in bed at night worrying about their own health or that of a loved ones, EHR privacy is unlikely to be what is on their mind. Turning to the internet is easy with the constant availability – no need for an appointment or co-pay.
Consumer health sites have a significant impact on the quality of life of their users who turn to them before – or instead of – seeking medical help. Many doctors don’t know what their patients are doing online, and many dread the patient who arrives at an appointment armed with search results. “There’s so much information (as well as misinformation) in medicine — and, yes, a lot of it can be Googled — that one major responsibility of an expert is to know what to ignore,” but patients often lack that expertise.
That is where the disconnect lies between patients and doctors: that the time spent online is invisible to or an annoyance to a doctor but is a lifeline for many patients. Doctors need to understand and learn from their patient’s information seeking behaviors. And there is a lot to learn since what patients communicate online is a very different lens on their concerns and needs than what a doctor hears during a consultation, which is a small snapshot of how the patient is feeling, provided in a location much less comfortable than the patient’s home. And doctors need to “prescribe” sites with reliable and useful information, and online health communities where peer support is available.
Technology is not the answer, even good design is not the answer – although both can help. So can better information and health literacy skills. The greatest impact will come from bridging the chasm between what patients are currently doing online and what takes place during the doctor-patient consultation.
I spoke today at the Massachusetts Technology Leadership Council Healthcare Lunch & Learn Series on Patient, Heal Thyself: How to Succeed with Online Consumer Health Sites. My co-presenters were John Lester (also known as Pathfinder Linden) who left Second Life for Waltham and Amir Lewkowicz, co-founder and Vice President for Partnerships at Inspire. I will post my notes shortly but until then, here is the abstract:
With consumer-directed care, patients are being asked to play a greater role in their health care. Moreover, those with chronic diseases often get better counsel from other sufferers than they do from physicians. This talk will cover the most effective ways to design and evaluate online health communities.
Changes in the health care system and the pervasiveness of the Internet have led to an increased use of the Internet by health care consumers. 80% of people in the US who use the Internet are using it for health searches.
Health web sites and online health communities provide a means for patients and their families to learn about an illness and seek support. The importance of online consumer health is evidenced by the popularity of sites such as WebMD and RevolutionHealth. Consumer health sites have a significant impact on the quality of life of their users who turn to them before seeking medical help.
Health web sites and online health communities raise difficult design challenges. These challenges include wide variability of participant’s medical expertise, health literacy, and technology literacy. A major risk is the potential consequences when poor advice is taken or when professional treatment is not sought.
By participating in this interactive discussion you will learn:
1) How online communities benefit consumers and businesses
2) How the nature of the disease or illness impacts site design
3) How innovative Web 2.0 technologies can enhance participation
4) What is necessary to start and sustain successful sites
Disintermediation was a buzzword of the past decade when people saw how the internet could essentially remove the middleman. This led to more empowered consumers (another buzzword) with a wealth of resources at their fingertips (via their keyboard). In other words, someone with a problem becomes a knowledge seeker, wading through the results of searches, but due to the volume and uneven quality of information and pervasive poor information literacy skills, many don’t find useful help. Internet-based intermediaries have had limited success.
The solution is information funnels. These are people who
- have domain expertise
- understand consumer psychology: how consumers think, feel, reason, and select between different alternatives
- know the resources, regulations, and options available
- guide someone towards solutions.
We all give advice based on our experiences caring for a child or aging parent, dealing with a health problem, changing careers, or finding love. However, many of us have tunnel-vision since our expertise is based on limited experiences. This is where the information funnel comes in.
Here is an example: my friend, Joanne Rosenthal, is a social worker specializing in elder care. She offers a consultation with someone whose aging parent is no longer able to live alone and unassisted. She steers them to the services they need now and may need in the future, including the web sites that she has vetted. I just did a search on elder care and got 4,600,000 results, and who knows if I even even used the best term. Another example: for clients who want to move into e-learning but don’t know where to start, I teach them about the range of possibilities for online courses, the terminology, and the technologies, and map out a strategy for them. Whether Joanne or I do the actual work, we funnel the most useful information to our clients.
I believe this is true for all domains and is arguably the growth job in 2008.
Thanks to Larry Prusack for inspiring me over a coffee at Starbucks!
I am helping design an online health community for Alzheimer’s caregivers, and one of the concerns we have is lowering the barriers to production and consumption of user-generated content. There are many sites that have only expert-generated content, but our theory is that caregivers learn from and support each other, and that writing about their caregiving experiences can be both cathartic and empowering since they are helping others. The challenges are how to design this effectively, how to get people using the site, and how to manage information quality.
This notion of lowering barriers came to mind as well when I read about how Massachusetts’ Public Health Council approved the opening of MinuteClinics at CVS. The clinics, staffed by nurse practitioners, are intended for the treatment of “minor problems such as sore throats, ear infections, and poison ivy, but not chronic diseases such as cancer or diabetes, nor serious emergencies.” There is a reported shortage of primary care doctors in Massachusetts, leading to overburdened hospital emergency rooms. What these MinuteClinics seem to have the potential to do is lower the barriers to receiving competent professional care.
Apparently there are many retailers and employers offering on-site clinics. Carl Mercurio, President, Corporate Research Group, commented that their “report doesn’t make any clinical observations or draw any conclusions about the quality of care delivered by retail clinics. It’s really a report about the economics of these clinics as a business model. Our primary conclusion is that retail clinics are sustaining heavy economic losses and will not reach their near-term expansion goals without a serious shakeout and industry consolidation. However, the retail clinic concept will survive in our view as a limited solution to a very specific problem, i.e., providing convenient low-cost care for a limited number of acute ailments. Overall, my understanding is that nurse practitioners are very well qualified to deliver the type of care administered in retail settings. However, I don’t have any particular insights to support or refute that view.”
A Pew Report on Online Health Search 2006 found that 80% of Internet users in the US search for health information, and only “15% of health seekers say they ‘always’ check the source and date of the health information they find online”, or “about 85 million Americans [are] gathering health advice online without consistently examining the quality indicators of the information they find.”
The barriers to performing health searches are low. Information literacy and health literacy skills are also low for far too many people. Since quality is a huge problem, arguably more so with medical information that any other type of information, effective branding is paramount. While I was initially not enthusiastic about the concept of clinics in stores, I believe they may serve an important need for many and are preferable to poor quality online advice, long emergency room waits, or ignoring a medical problem.