Rise of the Smart Patient

Introduction: The Rise of the Smart Patient

How often does this happen in your practice: You enter the room to meet your patient, who presents you with a stack of literature she has downloaded off the Internet, self-diagnosing her perceived medical condition. You walk into the next room and a patient states that he wants a prescription for a new drug after reading information contained on that drug’s website, which he saw advertised on TV.

Like it or not, patients are searching the Internet to find healthcare information. At latest count, over 113 million individuals in the United States have searched for healthcare information online. They are finding answers to almost any health concern, creating personal health records, finding doctors, hospitals, and clinical trials, and managing insurance-related concerns. We are witnessing the rise of the smart patient, driven by the availability of 24/7 health information, reduced time for office visits, rising premiums, and the emergence of high-deductible health plans, all of which press patients to find their own answers to maintain both physical and financial health.

With over two million articles published in the literature each year and the emergence of thousands of health-related websites, we are also in the midst of an unprecedented information explosion, which can make it very challenging for the patient to find reliable information. And while being more informed is good, if the information is neither relevant nor reliable, then it’s distracting, time consuming, and potentially frustrating to both the physician and the patient. So the issue is, how can we, as physicians, help guide our patients at the crossroads of information overload and economic concerns to find more reliable information online.

For over ten years, physicians have been using evidence-based medicine (EBM) to sort through the overwhelming amount of information. However, due to time constraints, this is often challenging to do in daily practice. On the other hand, many patients have the time, interest, and willingness to perform research online, but they don’t have a systematic way of doing this. This article presents an EBM-aligned strategy to empower physicians to take an active role in enabling these patients to make wise use of online resources to support their quest to become smarter and healthier patients.

Harnessing EBM to Support the Rise of the Smart Patient

Most clinicians do not have the time to educate patients on the intricacies of EBM. But, if we can identify and invest our patients with the most basic principles of EBM, and offer appropriate evidenced-based resources, it will likely result in their bringing higher quality information to the visit, open new lines of communication, and strengthen a shared decision-making bond that may even save time in the patient encounter.

The Evidence-Based Medicine Resource Center at SuperSmartHealth.com provides a free resource that teaches patients the basics of EBM and also provides links to many of the resources mentioned below.

EBM teaches patients to think about their health decision-making as a four-step process that supports them to:

1. Frame their questions properly;
2. Find the best evidence to answer their questions;
3. Evaluate what they find to ensure it’s relevant and reliable; and
4. Apply the evidence to the particulars around their care.

Step 1: Framing the Question

The problem with much of the information patients bring to providers is that it does not answer the right question to begin with. For example, let’s return to the patient with Internet research supporting his request for the drug he saw advertised on TV. While the patient might initially believe he is the perfect candidate for the medication, re-framing the question using the EBM PICO model (Patient, Intervention, Comparison intervention, Outcome) helps to clarify crucial gaps in the information required to make a fully informed decision.

Introducing and using the PICO format with such a patient invites a discussion about whether the patient population (P) in the study is indeed similar to the patient; the intervention (I) is available on his health plan; the benefit of this particular therapy was found not only more effective than placebo, but also more effective when compared (C) against the current best available regimen; and that the outcomes (O) of benefit demonstrated in the research are truly meaningful to the patient’s quality and length of life, rather then simply a change in some laboratory test value.

This format saves everyone time by streamlining the discussion and increasing the likelihood patients will find the right answers to the right questions when they proceed to search for information on the Internet.

Step 2: Finding the Evidence

When it comes to guiding our patients to help them find better information on the Internet, it’s important to recognize where they are searching and to direct them to high-quality resources that may be underappreciated.

According to the Pew Online Health Search Survey (2006) 66 percent of individuals begin their health inquiry at a search engine like Google. This returns an overwhelming amount of information, although Google now enables one to refine the search by categories such as treatment, test/diagnosis, symptoms, causes/risk factors, and alternative medicine.
Another 27 percent start at a health-related website. The top trafficked websites according to Compete.com are listed in Table 1 below. The quality of these health-related websites has improved dramatically over the years. It is worth surfing these top ten sites to explore some of the information they provide.

Website Rankings

1. WebMD.com —  15.1 million visitors per month (Jan. 2008)
2. NIH.gov — 8.2 million visitors per month (Jan. 2008)
3. RevolutionHealth.com — 6.1 million visitors per month (Jan. 2008)
4. RightHealth.com — 5.6 million visitors per month (Jan. 2008)
5. everydayHealth.com — 5.0 million visitors per month (Jan. 2008)
6. MayoClinic.com — 5.0 million visitors per month (Jan. 2008)
7. MedicineNet.com — 4.2 million visitors per month (Jan. 2008)
8. RealAge.com — 3.0 million visitors per month (Jan. 2008)
9. Drugs.com — 2.8 million visitors per month (Jan. 2008)
10. Healthline.com — 2.4 million visitors per month (Jan. 2008)

Of the top commercial websites, WebMD.com and RevolutionHealth.com include comprehensive coverage of health conditions, drugs, assessment of symptoms, screening, risk assessment tools, discussion boards with physicians and fellow patients, personal health records, and directories for healthcare providers and hospitals.

The top nonprofit health site, NIH.gov, the medical research agency for the United States, acts as a clearinghouse for the 27 institutes and centers that make up the NIH. It provides access for consumers to high-quality information on a comprehensive A-Z list of health topics, as well as newsletters, and a helpful list of toll-free hotlines to health organizations across the country.

Beyond the websites ranked most popular are other quality resources too numerous to mention in the space of this article. However, you can find links to many of them through The Consumer and Patient Health Information Section (CAPHIS) of the Medical Library Association’s “Top 100 List” of “Health Websites You Can Trust” at http://caphis.mlanet.org/consumer/generalhealth.html.

One resource worth mentioning is the first referenced on the CAPHIS list: MedlinePlus.gov from the National Library of Medicine. Drawing approximately 200,000 visitors per month (according to Compete.com in January 2008), it is relatively underappreciated when compared with the most trafficked websites above. MedlinePlus is one of the best patient education resources you will find with extensive information on 750 health-related topics, the latest health news, a comprehensive resource on drugs and complementary alternative medicine supplements, an illustrated medical encyclopedia, interactive patient tutorials, a medical dictionary and physician and hospital directories. One of their most useful resources is an extensive list of organizations by health topic (http://www.nlm.nih.gov/medlineplus/organizations/orgbytopic_a.html), which have been pre-screened for quality, authority and accuracy of health content, thus enabling the patient to efficiently identify the top few websites related to their particular health condition.

A few other resources referenced by CAPHIS also bear mention: Healthfinder.gov developed by the Department of Health and Human Services, MayoClinic.com (one of the top 10 most popular sites above and contributes information to Revolution Health), the ClevelandClinic.org/health/ (which contributes information to WebMD), and FamilyDoctor.org produced by the American Academy of Family Physicians.

The strong point of many of the resources listed above is that they cater to the health literacy of the average Internet user. For select patients with high health literacy (or for their designated “EBM champions” who search on their behalf), the following three-step drill down strategy may also be offered as an efficient and rigorous way to find high quality evidence-based information.

First, these patients may begin searching the same online medical textbooks healthcare providers search, such as those at Emedicine.com and UpToDate.com. Many chapters of both resources provide links to free consumer information. The health professional information of UpToDate requires a subscription, but motivated patients may pay $20/week or $45/month for full access.

Next, patients can drill down further looking for high quality evidence-based information on focused clinical questions in the form of systematic reviews or practice guidelines. The Cochrane Collaboration (www3.interscience.wiley.com/cgi-bin/mrwhome/106568753/HOME) publishes some of the highest quality reviews around and provides free abstracts with easy to read plain language summaries for patients. The National Guidelines Clearinghouse (NGC) (www.guidelines.gov) is the single best resource to find practice guidelines from hundreds of institutions and affiliated organizations. Links are provided to the major recommendations and, where available, to the full text of each guideline and handouts for patients.

Finally, patients who want to drill down even further to search for the latest studies on their specific questions of interest can search the U.S. National Library of Medicine’s MEDLINE database at Pubmed.gov. PubMed currently searches over 17 million records from over 4,800 journals. A helpful tutorial is available to guide individuals in using its powerful search tools, including the “Clinical Queries” link that has filters for searching on questions of therapy, diagnosis, etiology, and prognosis. Abstracts can be downloaded for most articles and some have links to free full text articles. For those that don’t, one can try retrieving the full text article through freemedicaljournals.com, which provides free access to over 430 journals.

Step 3: Evaluating the Evidence

According to the Pew survey, almost three quarters of health seekers do not consistently check the sources and date of the health information they find online. In partnering with patients to improve healthcare, it’s essential to highlight the importance of evaluating the reliability of online information.

There are two key steps to evaluating information online: First, evaluate the reliability of the website searched, and second, evaluate the quality of the research that the website ideally references.

MedlinePlus has a great section on “Evaluating Health Information Online” at www.nlm.nih.gov/medlineplus/evaluatinghealthinformation.html. It leads off with a flash tutorial at www.nlm.nih.gov/medlineplus/webeval/webeval.html, which goes through four key considerations, including who authored and funded the site, how to determine quality, and issues of privacy.

The big issue for patients evaluating the quality of research referenced on websites involves them recognizing a hierarchy of evidence: how randomized controlled trials (and systematic reviews they contribute to) provide more reliable information than observational studies, which provides superior information to anecdotal evidence. Healthcare providers and patients can find more information on this and on how to tell whether evidence is relevant, believable, and meaningful at the EBM Resource Center at SuperSmartHealth.com.

Step 4: Applying the Evidence

Once patients identify more reliable information, they will be more prepared to engage in the final step, discussing how the evidence applies to them and share in the decision making process.

This step involves a consideration of the best options, extrapolating from the evidence the likelihood of the key outcomes for each option and weighing the patients’ preferences for those outcomes.

In deciding whether one approach is a step better than another, physicians can outline several factors the patient may consider by using the pneumonic STEPC (Safety, Tolerability, Efficacy, Price, and Convenience). This pneumonic may help the patient remember the key outcomes to be weighed and frame subsequent discussions with health care providers.

In addition, great resources are available to help prepare patients in advance for decision-making discussions with their providers. The Foundation for Informed Medical Decision Making (informedmedicaldecisions.org) and its partner Health Dialog (healthdialog.com) work with health plans and employers to provide shared decision programs that help patients clarify their options and the risks, benefits, and preferences associated with each. The Ottawa Health Research Institute (http://decisionaid.ohri.ca/index.html) provides one of the best free resources for patient decision aids. In addition to providing generic forms to help patients structure their decisions, they provide an extensive A-Z list of disease-specific decision aids, all of which have been graded according to the International Patient Decision Aid Standards to ensure they incorporate valid information.

As patients become more informed about their options and empowered to make decisions, we also need to be mindful of the context in which decisions are made. Optimal health is more than treating disease. Any decision may also be influenced by patients’ socioeconomic circumstances, cultural context, spiritual values and their personal vision and goals for optimal health and wellbeing.

Conclusion

By working with our patients, we can play an active role in supporting the rise of the smart patient. In teaching patients EBM-aligned strategies, which enable them to frame questions properly, find evidence in more reliable databases, and become more critical in the way they evaluate information, patients will bring more reliable evidence to their office visits. If they also have the ability to recognize the factors that contribute to the decision-making process, they will come to the visit well-prepared to discuss their various options. It’s a vision to the future — a partnership between physician and patient, leveraging the skill set and time of both parties — that may not only save time but result in more fulfilling encounters and smarter, healthier, and more satisfied patients.