Posts tagged ‘health literacy’
Much like love and religion, health literacy is a topic that many people have a revelation about. It is not explicitly taught in school (unless you study Health Communication or a related topic); instead people have personal experiences that lead them to learn about health literacy and recognize its importance in all aspects of healthcare.
My health literacy revelation came while I was a patient advocate for a Cambodian refugee who had cancer. I won’t go into the details of his health condition; just that I took him and his wife to his doctor’s appointments. During the appointments, I encouraged him to talk about his symptoms and medication side effects and asked about test results and treatment options until I understood them. I always made sure the couple were following and checked to see if they had questions.
There are many aspects of patient advocacy I could expand upon, but what struck me the most was how the couple would ask me on the drive home and even weeks later to repeat what the doctor had said. This was information that I retained but they did not. As I started to read about this, I discovered that studies had been done on the emotional impact of disease and how comprehension and retention were impacted.
While language and culture may had been factors, I believe fear had a stronger impact on this couple’s health literacy skills. Now, when I teach, I include health literacy, especially for its role in the design and evaluation of health Web sites. When someone goes to a health Web site, poor health literacy skills can influence the search terms used, the Web sites selected, and how information is used.
I wrote the cover story of Tufts Medicine, Winter 2009, with Dr. Janey Pratt, a surgeon at Mass. General Hospital. The article looks at patient use of the Internet from the physician perspective. The article concludes:
Online resources can help your patients become better educated about medical topics, more confident and comfortable with you and more compliant with treatment. As Anthony Schlaff, director of the M.P.H. program at [Tufts University School of Medicine], notes, “At its best, the Internet is one more tool in the partnership between a physician and patient.” [Bruce] Auerbach, the Massachusetts Medical Society president, couldn’t agree more. “Given that patients are going online,” he says, “the best thing to do is engage them as partners in care.”
The full article can be read at Dr. Google: Your Patients, the Internet, and You.
In “The Doctor as the Second Opinion and the Internet as the First,” I describe the increasing common phenomenon of people using the Internet before seeing their doctor:
People who use the Internet for health information often obtain their first opinion that way, and then, if they go to a doctor, the doctor’s advice is relegated to the second opinion. Using the Internet, or Dr. Google, as a first opinion can be problematic due to misinformation, misinterpretation of valid information, and the fears that can arise due to lack of medical knowledge, inexperience, and limited perspectives. When patients do visit their doctor for a second opinion, some do not disclose the fact they already received their first opinion and often their doctors do not ask. The result is that patients may suffer needlessly if their fears, concerns, misunderstandings, and misinterpretations are not addressed by the healthcare providers with the expertise and skills to assist them. A pernicious disconnect exists between many patients who use the Internet for health information and the medical professionals who care for them. The medical profession can alleviate this disconnect by taking the lead in establishing guidelines for systematically talking to patients about, and guiding, their Internet research. Human-computer interaction professionals can collaborate with the medical community in ensuring credible health Web sites become the gold standard that patients use to achieve better health.
I appreciate any feedback, insights, or experiences.
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