Healthcare Self-Management Suggestions for e-Patients

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We are witnessing a transformation of healthcare in the information age. The Internet has become a powerful healthcare resource for both physicians and patients. e-Patients represent a new type of informed health consumer, a term encompassing both primary patients who use the Internet to educate themselves about a given medical condition for their own illness and the friends and family members who go online on their behalf [1].

In 2003, a WebMD study found that the Internet was the primary source of health information for consumers, spending more time researching health information online than any other media source [2]. According to another study, Internet health seekers reported two effects of online health resources – better health information and services, and different (but not always better) relationships with their doctors [3]. A 2005 survey found a significant number of respondents that turn to the Internet for health issues. When extrapolated to millions of American adults who utilized the Internet for decision making, 7 million online users said the Internet played a crucial or important role as they coped with a major illness, and another 17 million online users indicated that the Internet played a crucial or important role as they helped another person with a major illness or medical condition [4]. However, only 15% of Internet health seekers consistently check the source and date of health information they find online and an additional 10% check these two essential information quality indicators “most of the time” [5].

These numbers underscore the need for a system to evaluate reliability and credibility of healthcare information found on the Web. Indeed, a recent study by The Pew Internet & American Life Project, an organization that explores the impact of the Internet on (among other things) healthcare, found that 73% of health seekers have at some point rejected information from a website during a health search due to lack of credibility [6]:

“Still, 73% of health seekers have at some point rejected information from a website during a health search for one reason or another. Here are the major reasons they cite for turning away from a site:

  • 47% of health seekers have decided not to use information they found because the website is “too commercial and seemed more concerned with selling products than providing accurate information.”
  • 42% of health seekers have turned away from a health website because they couldn’t determine the source of the information.
  • 37% of health seekers have turned away from a health website because they couldn’t determine when the information was last updated.
  • Other reasons for turning away: no visible “seal of approval”, sloppy or unprofessional design, or the presence of bad information (as judged by the health seeker or the health seeker’s own doctor).”

The most widely recognized standard-setting organization on the Internet, the Heath On the Net (HON) Foundation is attempting to guide the growing community of healthcare providers and consumers on the World Wide Web to sound, reliable medical information and expertise through quality assessment and systematic and stringent peer review. The HON Foundation Code of Conduct (HONcode) addresses the issue of reliability and credibility of healthcare information found on the Internet, and sites that follow the HON Foundation’s code of conduct can display a HONcode seal. The HONcode seal links to a registration status report on the HON Foundation site and allows a visitor to verify the site’s registration. Over 4,700 HONcode accredited websites honor the standards for disclosure and responsibility in online medical publishing, making it the largest voluntary accreditation network on the Web [7]. Thus, e-Patients using the Internet to educate themselves about a given medical condition can have confidence that websites bearing the seal comply with the HONcode standard for trustworthy health information.

I’ve written a number of articles here on Highlight HEALTH that advocate taking an active part in managing your health. But how much is too much? In his article Self-Management: How Far Should you Go?, Dr. Charlie Smith writes:

“In general, it seems proper for patients to take responsibility for educating themselves about their condition, carefully consider questions they would like the physician to answer, and commit themselves to an overall fitness plan. The physician should commit to monitoring their condition, obtaining appropriate laboratory and screening tests at the right time, performing periodic examination, filling and refilling medication prescriptions, and providing recommendations and suggestions about modifications to treatment approaches.

But, this is not a clearcut forumula and, I think, the only way to strike a proper balance in defiing the right roles for an empowered patient-doctor relationship is to maintain an open attititude, discuss the issues regularly, and be prepared to adjust roles over time.”

With that in mind, here are some suggestions for managing your own healthcare in partnership with your doctor:

  • Keep a copy of all your health records.
  • Request an immunization schedule and maintain a record of your child’s immunizations.
  • Use the Internet to educate yourself about your medical conditions.
  • Ask both your doctor and pharmacist questions when you are prescribed medication.
  • Research your medications and familiarize yourself with possible drug interactions.
  • Prior to visiting your doctor, make a list of all prescription and non-prescription medications you are currently taking. Non-prescription medications include dietary supplements (vitamins, herbs) as well as over-the-counter products such as cold medicine and pain relievers.
  • Ask if you can email your doctor with questions between visits.
  • Maintain a journal of doctor visits with details on your symptoms, what was discussed and what was done (e.g. medications prescribed, x-rays ordered).
  • Provide your doctor with regular feedback regarding office visits and staff.
  • Maintain a healthy lifestyle. Don’t forget to wash your hands!

I encourage e-Patients and physicians to comment with their own suggestions.

References

  1. Ferguson and Frydman. The first generation of e-patients. BMJ. 2004 May 15;328(7449):1148-9.
    View abstract
  2. Research Reveals That Internet Has Become Primary Means by Which Consumers Access Health Information. WebMD press release. 2003 Feb 10.
  3. Fox S and Fallows D. Health searches and email have become more commonplace, but there is room for improvement in searches and overall Internet access. Washington (DC): Pew Internet & American Life Project Report. 2003 Jul 16.
  4. Horrigan J and Rainie L. Reports: Family, Friends and Community. Washington (DC): Pew Internet & American Life Project Report. 2006 Apr 19.
  5. Fox S. Online Health Search 2006: Most internet users start at a search engine when looking for health information online. Very few check the source and date of the information they find. Washington (DC): Pew Internet and American Life Project. 2006 Oct 29.
  6. Fox S and Rainie L. How Internet users decide what information to trust when they or their loved ones are sick. Washington (DC): Pew Internet and American Life Project. 2002 May 22.
  7. Boyer and Geissbuhler. A decade devoted to improving online health information quality. Stud Health Technol Inform. 2005;116:891-6.
    View abstract
About the Author

Walter Jessen, Ph.D. is a Data Scientist, Digital Biologist, and Knowledge Engineer. His primary focus is to build and support expert systems, including AI (artificial intelligence) and user-generated platforms, and to identify and develop methods to capture, organize, integrate, and make accessible company knowledge. His research interests include disease biology modeling and biomarker identification. He is also a Principal at Highlight Health Media, which publishes Highlight HEALTH, and lead writer at Highlight HEALTH.