Improving Patient-Physician Communication about Internet Use: Why “Don’t Ask, Don’t Tell” Doesn’t Work

I met Trisha Torrey, who writes a Patient Empowerment Blog, at the 2009 Connected Health Symposium in Boston, October 21-22. She wrote about my research in Your First Medical Opinion – Don’t Ask Don’t Tell? and included a poll. The results (you see them after you vote) show that 55% of the 40 respondents so far ”don’t usually tell my doctor about my online research”. Trisha has also written about Sharing Internet Health Information With Your Doctor where she presents a collaborative approach and guidelines for sharing information with a doctor, starkly contrasting with the patient rather scathingly portrayed in When the Patient Is a Googler.

I presented about patient-provider communication at the Medicine 2.0 Conference in Toronto September 18, 2009.  My extended abstract, Improving Patient-Physician Communication about Internet Use: Why “Don’t Ask, Don’t Tell” Doesn’t Work, follows:

Background: A disconnect currently exists between patients’ use of the Internet and their consultations with their physicians. Too often, patients don’t tell their physicians about their Internet use and physicians don’t ask; both suffer due to the erosion of trust and missed educational opportunities. Better patient-physician communication about Internet use is needed to help patients become truly empowered healthcare consumers.

Objectives: Too little attention is paid to improving how patients locate and use health Web sites and communicate about their use of these Web sites with their physicians. The very people who can best help patients, their medical providers, become disconnected from these so-called empowered healthcare consumers, who use the Internet instead of, before, or after consultations with their physicians without it being discussed or integrated into their care. Poor health outcomes can occur when patients have unexpressed concerns arising from the Web sites they have accessed, don’t believe their physician when a diagnosis or treatment plan differs from what they obtained from the Internet, use their doctor for a second opinion without disclosing that they obtained their first online, make poor decisions without or disregarding medical input, or scour the Internet for miracle cures.

Methods: Based on a literature review, extensive evaluations of health Web sites, and interviews with patients and physicians, better health outcomes for patients can be provided through the design of better user experiences, physician education about patient use of the Internet, patient education about effective Internet use, and the integration of Internet use into patient-physician consultations.

Results: While the designers of e-commerce Web sites focus on user experience design to create successful initial and repeat visits, designers of health Web sites often overlook the importance of the user experience. To help healthcare consumers in all aspects of locating and using online health information, health Web sites need to accommodate the range of needs and varying degrees of health literacy of site visitors. Well-established user experience design techniques can facilitate this, namely the use of personas, competitive analysis, and formative evaluation at all stages of design and development. Health Web sites can also incorporate guidelines about when and how to communicate with healthcare professionals about the information on the Web site.

Physicians need to have a better understanding of the extent to which and the reasons their patients are online before, and will likely go online after, a consultation. Currently, physicians rarely ask patients about their use of the health Web sites or any concerns that they have as a result, nor do they recommend reliable Web sites to newly diagnosed patients. Many fear the patient who arrives with a ream of printouts or who takes over a consultation. But worse than that is when patients have unexpressed fears or distrust their diagnoses because of what they accessed online. Physician training about how and when to ask patients can be aided by adding questions about Web sites used and any concerns to the form patients fill out in the waiting room, and physicians can receive guidance about reliable Web sites to recommend to their patients.

When patients go online, they often start at a search engine and rarely determine the source or date of the information they are using. Better patient education is needed on how to discern credible Web sites and health information on the Internet, a skill that is becoming even more important with the wealth of user-generated content, the many erroneous or misleading Web sites that compete for their attention in searches, and the immediacy of access possible from Internet-enabled mobile devices. Furthermore, patients need guidance about how to discuss their Internet use with their physician appropriately, without taking over the consultation or providing conclusions to a physician who is probing for symptoms. Finally, patients need to seek recommendations for Web sites to use when they leave a consultation with unanswered questions.

Conclusions: Patient use of the Internet disconnected from physician care can be detrimental. The benefits of Internet use can accrue with better design, education, and communication. More effective health Web site use can occur through improved design practices, physician and patient education, and patient-physician communication integrating patient Internet use. Better communication can be facilitated by questions on patient forms and guidelines on health Web sites. The next step is testing these hypotheses. The expected outcome is better informed patients whose Internet use is integrated into, rather than disconnected from, their medical care.

The Ephemeral Nature of Patient-Provider Consultations

I have seen many examples of ephemeral art: the chalk artist whose work will be washed away; the graffiti artist who uses mud instead of spray paint; and the Washington Monument’s face lift with specially designed scaffolding and draping. Ephemeral art is described as being transient and the fleeting, with no physical remnants (other than photographs).

A consultation has an ephemeral nature as well, with the physical remnants being doctor’s notes. Only rarely do patients have access to these, one exception being the OpenNotes© Project at Beth Israel Deaconess Medical Center which, according to a description, will “evaluate the impact on both patients and physicians of sharing the comments and observations made by physicians after each patient encounter.” Tom Delbanco, MD, anticipates this will improve patient recall and transform the doctor-patient relationship.

This may change what doctors write since they know that patients might read their notes. It may help patients with comprehension and recall, which have been shown to be reduced especially with a new diagnosis, and hopefully with adherence as well. There may be unanticipated results.

Certainly one of the most common ways to increase recall of a consultation is to increase the number of people there. I saw this first-hand as a patient advocate. Some of the responses, in comments and emails, to Why I Became Interested in Health Literacy, suggest ways of capturing a consultation with audio or video. There are clear advantages to this for patients who can then listen as many times as needed following the meeting, although the immediate opportunity to ask questions is lost. But, like a doctor who may write notes differently knowing they are available to the patient, a recording can change the nature of a consultation.

Knowing that OpenNotes© is new and that the other suggestions might be hard to implement, I asked some colleagues about their experiences with capturing what takes place during a consultation.

Some patients capture the instructions and the keywords. Tania Schlatter, a graphic designer, said her strategy is to “make them write it down for me. For example, my son has allergies and I made an appointment with the RN. She rattled off so much stuff I made her write it down for me. It was a messy scrawl on a bunch of stickies but that’s my reference now.”
 
Gilles Frydman, founder of ACOR.org, said that health literacy skills are no different in France than in the US but that “French doctors all the time record summaries of the conversations” for their patients. He went on to say, “They end up knowing the patients infinitely better than the average US doc using many times more technology. And the French patients are not more health literate than their US counterparts. Good health care is personal; technology should have enhanced that fact, not replaced it.”

Finally, I spoke to Paul S., who said, “The medical people I’ve worked with lately have been pretty good about writing down essential details such as over-the-counter drug names or suggested things to do or not do. Sometimes they have standard handouts that they print off on demand. That said, it would be really interesting to experience the OpenNotes process to compare what I think I got from the conversation with what the practitioner intended to convey. I don’t have the sense that I’ve missed anything from my consultations, but then that’s the point – I wouldn’t know! I have on occasion obtained a physician’s notes about tests or diagnoses, and have wished for someone to interpret the medical jargon. These are notes intended for other medical professionals, so the jargon is appropriate for that purpose. The interpretation of such notes for me might need to be, say, 3 times as many words because I know a fair bit about human biology, but it could easily be 10 or more times as many words for someone with less knowledge. And I know people for whom no amount of interpretation would be enough – they don’t want to understand anything, they just want the bottom line.”

My own recent experience with poison ivy (for the first time) was that my recall was not aided by husband, who had accompanied me to the nurse practitioner, but it helped me when I was frustrated. He repeated to me what she said: “It will get worse before it gets better” and “Nothing will make it go away faster, just reduce the symptoms.” His repetition helped me through a long two weeks.

It’s easy to reflect on the impact of changes: with the demise of Marcus Welby-like home visits, doctors could see more patients but could not see their home environments; and patients were in a much less comfortable environment, possibly impacting their health literacy skills due to the discomfort of being in a waiting room or being in an examining room in a paper gown. With all the technology available for every other aspect of our lives, and for healthcare in particular, there is no technological approach in practice that I know of that captures a consultation. It will be fascinating to see the results of OpenNotes© and mechanisms to give patients more access to health records. While ephemeral art changes the viewer’s reaction, knowing its transient nature, there seem to be few benefits to the ephemeral nature of consultations.

[Note: I just came across Amber J. Tresca's Get the Most from Your Doctor's Appointment, which recommends bringing paper to a doctor's appointment to use for taking notes.]

Why I Became Interested in 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.

Finding Useful H1N1 Information Online

I was interviewed for Healthcare IT News about how H1N1 information is disseminated to the public. While the news media was providing constant updates about outbreaks, my interest was in how healthcare consumers get useful information. I sent the author, Molly Merrill, a quick analysis of some of the sources of information I had used.

The CDC is known and established as the most respected source of information in this country and comes up as one of the first results in most searches on “swine flu” or “H1N1″. Their site is well-branded and is clearly marked with the last updates. However the site itself is busy with sidebars and lots of related information, while arguably the most important information for most healthcare consumers is in a box near the bottom, “What You Can Do to Stay Healthy”. What is likely to be prevalent on most people’s minds doesn’t appear at all here. If you click on “H1N1 Flu & You” near the bottom, a Q&A format addresses the questions people are likely to have, such as “What are the signs and symptoms of this virus in people?” In addition, the CDC has done a great job of using social media, such as twitter, for updates.
 
While I applaud the Massachusetts Department of Public Healthfor providing material in 14 languages, the page itself is basically a collection of links to PDFs. The documents I read are are well-written but some are not even what the links say; for instance, under “Resources if You Are Sick or Think You Are Sick”, the Flu Symptoms Checklist was designed for a parent to determine if a child should be kept home from school or brought to the doctor.
 
WebMD’s Swine Flu Centerdoes a better job of providing immediately visible and useful information through clearly labeled links to answer common questions such as “Swine Flu and Travel”. Due to poor health literacy skills and the fears that have been played upon by the media frenzy, health Web sites should provide very specific information that addresses the concerns uppermost on a healthcare consumer’s mind and it should take minimal scrolling to find it, as is the case here. 
 
Finally, my town, Lexington, MA, has done a great job of addressing parental concerns through emails. The school department Web site provides a parent resource with guidelines about how to talk to your child, a huge problem when children hear a lot on the media and from their friends and need to hear factual age-appropriate information from their parents. And, when one of my sons was out sick for a few days, I received a phone call from the school nurse!

What Your Patients Are Doing Online and Why You Should Engage Them as Partners in Care

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.

The Doctor as the Second Opinion and the Internet as the First

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.

The Impact of the Democratization of Health Information on Elders

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.

The Disconnect Between Patients and Doctors

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.

Patient, Heal Thyself: How to Succeed with Online Consumer Health Sites

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

Increasing Health Literacy and Awareness on TV

If I was a screenwriter and needed an au courant health problem to feature, I know where to turn. The Winter 2008 issue of Real to Reel provides a synopsis from media sources and leading health agencies, including how malaria-infected mosquitoes are being used to develop a new vaccine and how a door-to-door salesman donated a kidney to someone he tried to sell a vacuum cleaner to. It’s easy to imagine the taken-from-real-life dramas that could result and to furthermore see the opportunities to increase health literacy and awareness.

Hollywood, Health & Society (HHS), part of the USC Annenberg Norman Lear Center, helps entertainment writers with medical and health storylines. Their Sentinel for Health Awards “recognize exemplary TV storylines that best inform, educate and motivate viewers to make choices for healthier and safer lives. Past recognition has been given for storylines about breast cancer, diabetes, HIV/AIDS, alcoholism, disability, fetal alcohol syndrome, car crashes, organ donation, and safe sex.” The award was started by the CDC for soap operas and has been expanded to include “daytime drama, primetime drama, primetime minor storyline, primetime comedy and telenovela.”

While I am focused primarily on the use of health web sites and online health communities, I realize the strong influence of print, TV, plays, and movies. I wrote earlier this month about Ellen Goodman’s column about conflicting health messages and the difficulty of knowing what to do – or which study to believe – to stay healthy. The influence of TV, plays, and movies is more powerful since the message is more visual and designed to engage the viewer’s emotions (my heart was pounding the last time I watched Nip/Tuck). According to O Magazine, the CDC reports that 88% of Americans learn about health issues from TV and I imagine that the number is high for movies, plays, novels, and other creative media: virtually all include someone who is ill, dying, or dies during the course of the story.

Where is the line between accuracy and creative license? The CDC and other agencies are at the accuracy end, but efforts like HHS certainly increase the accuracy of the abundant creative outlets. On the one hand, Forbes reports that “a new study by researchers at the University of Southern California, published this month in the Journal of Health Communication,… shows viewers of an ER storyline about teen obesity, hypertension and healthy eating habits were 65% more likely to report a positive change in their behavior after watching.” And on the other hand, WebMD reports that the number of people having cosmetic surgery is increasing and that many people have inaccurate perceptions of the recovery process and the impact of the surgery on their lives due in part to television makeover shows like The Swan and Extreme Makeover.

Health web sites and online health communities share many of these problems in terms of their accuracy and potential impact, the primary difference being that they are not designed for entertainment.

Lowering the Barriers to Quality Health Care

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.