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.