Summary: We should all be lucky enough to only have the need to learn about diagnosing medical conditions and finding appropriate treatment for making it through a class. But my journey through the maze of medical websites to find information that I could understand and trust might be the key to your quest as well.
Keywords: E-patients, internet, health research, health information.
Citation: Harmel M. Evolving from patient zero to Dr. House. J Participat Med. 2013 Jan 16; 5:e2.
Published: January 16, 2013.
Competing Interests: The author has declared that no competing interests exist.
I was a “patient zero” — not as the term is used in infectious disease outbreaks — but as in describing my level of knowledge entering a mini-med school class where my fellow public health students and I pretend to be TV’s House MD solving medical case mysteries. Some of my classmates had biology backgrounds, but most were as clueless as I was entering the class. In my case a gross-out frog dissecting experience in 7th grade relegated the world of cells and anatomy into a black hole. I entered at the patient level with zero background in biology.
Many other patient zeros are moving to become empowered patients, although along the way some have their own unpleasant experiences with research standing as barriers to overcome and minefields to avoid. The first danger is the miracle cure being promoted by the celebrity of the day or the newly self-proclaimed “expert.” Learning to find trusted sources of health information is an important goal. For many it means learning to avoid the sea of quack websites and the content generators that churn out health information designed to attract Google hits and deliver ads instead of provide meaningful information.
There is also the challenge of simply learning the language. The medical field is full of jargon, acronyms and too many Latin and Greek names. Much of this can be communicated in a way that is more easily understood, but that is not the goal of many research papers aimed at a peer audience. The challenge for patients is finding trusted sources of health information presented in a way that can be understand at a high school reading level.
Back in the classroom, our brave group of 20 MPH and PhD students jumped into the deep end. With help from a great basic anatomy and physiology textbook, some brief lectures from a caring instructor, plus a compulsion to find answers, we dove in searching for clues that would explain the symptoms and determine the cause of our “disease of the week.”
We all went straight to Google and experienced the wild west of the web. Wikipedia often wasn’t a bad start: it provided a quick overview of the issue and often some good references, but there are limits to how much it can be trusted. The consumer-focused sites were often too shallow and the medical journals were way too deep. I needed the “just-right” Goldilocks source that could be both understood and trusted. I found three solutions (and now have a fourth) that became my go-to sites for answers.
First on the list is the Mayo Clinic Health Information site. This resource is a hidden gem because it’s really many different sites mixed together. For class I often started with their Symptoms to look for clues and moved to Diseases and Conditions. Their site restricted search box is also a user-friendly approach to answers that are authoritative and easy to understand. Another highlight is the “Preparing for your appointment” section that provides questions for the patient to ask at their appointment as well as clues to collect to help with their diagnosis. Here is an example for an allergy appointment.
Your tax dollars are behind the creation of the second site: Medline Plus, which comes from the resources of the National Library of Medicine and the National Institute of Health (NIH). Fortunately, many health related Google searches return results from the nlm.nih.gov prefix that start at the 5th to 6th grade reading level and lead to news reports, health organizations, research reports and more. Here is a link to an example on the topic of cholesterol.
Again, the in-site search bar is a great place to start and the home page also has a medical dictionary that is essential when you begin exploring the more in-depth information. This is a deep site with links throughout the NIH departments and trusted outside sources. There is even the MedlinePlus Connect feature for health care providers that allow integration into electronic medical record (EMR) systems to provide patient education materials.
When my physician wife needs to research a topic outside her specialty, her go-to resource is UpToDate. When I started wading through the full version in my class research to find more detailed information I was quickly in over my head. I would get the background information from the Mayo Clinic and MedlinePlus sites and then return to do the best I could. After using the UpToDate site for a while through my USC library subscription, I discovered their patient information. I progressed to using it to see if I was looking in the right direction and if I were close, I did my best to understand the full clinical information.
As I became more knowledgeable I relied more on UpToDate and moved it from the final stop to my initial source. I recently discovered that their most useful layman’s information called “Beyond the Basics” is available without charge. After the initial research, perhaps the greatest value of this site is its credibility because the information comes from the same well-referenced source used by many physicians.
A full-access subscription to UpToDate will run $500 a year, but a shorter one-week, or one-month access is available. David Voren reported on the Society of Participatory Medicine listserv that UpToDate integration with EMRs increases professional usage and can be employed for patient education as well.
The final option was discovered after my class ended, but it’s been around for decades. The Merck Manuals for patients and health care professionals rarely show up in a Google search but either one could be a one-stop place for both basic and more detailed information. Here’s the comparison of information about a stroke for both patients and professionals. The patient reading level is higher than Mayo and Medline Plus, but definitions of medical terms are provided and the jump up to the professional side is not much harder to understand. The information is also available in book form or as apps for Apple devices.
My general approach of starting with the basic patient information to get an overview of the topic and grounding of the terminology before diving into the professional material served me well and helped my classmates and me save a number of theoretical patients from certain death.
Mayo, UpToDate, and Merck can all be one-stop locations and Medline Plus serves more as an appetizer and launching pad to external resources. Each approach has advantages and while these four options may start the list, but they certainly are not the end.
Many of you will have other favorite sites or apps to offer as well. Where do other patient zeros go for health information, and what do providers use to educate their patients? Please share your experience with the resources I mentioned and add your suggestions to the list.
- Mayo Clinic – Web access
- MedlinePlus – Web access
- Merck Manual for Patients and Caregivers – Web, IOS app and book version
- UpToDate (Free Beyond the Basics) – Web access
- Valerie C. Scanlon, PhD, Essentials of Anatomy and Physiology, 6th Edition – Book with companion website
Health care Professional Focused:
- Merck Manual for Healthcare Professionals – Web, IOS app, and book version
- UpToDate (Subscription or library access) Web; IOS and Android apps
Copyright: © 2013 Mark Harmel. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the author, with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.