How can I do my own research on my diagnosed conditions, treatments, prescriptions, and results of my diagnostic tests; and how do I know I’m using authoritative and valid sources?
Let’s face it – while the internet has gone a long way towards emancipating information and making it wonderfully accessible to all, it’s also populated by sources of … let’s say, dubious validity. In a few keystrokes, you can access the Library of Congress. Look hard enough and you can find a website that speaks authoritatively on just about any topic, including passionate defenses of just about any opinion on any topic. Example? I recently heard, from a trustworthy friend, that space aliens are living amongst us. Maybe in your neighborhood. Put Men in Black on speed dial.
My point? Use the internet for your medical research, but use it carefully and selectively. It’s best to stick to sites that have been independently validated for accuracy, credibility, content, relevance, and currency. If you find something that merits discussion with your physician, be sure to let them know the source of your information. If you start the conversation with “I read on the internet …”, they’ll be rightfully skeptical, and what they’re likely to be thinking is that they’ll now have to spend time dispelling quackery. Start the conversation with “I read on MedLine …” and they’re far more likely to take your information or questions seriously.
What follows are a short list of excellent sources:
The Centers for Disease Control and Prevention is the leading national public health institute in the US. It is under the Department of Health and Human Services, and it’s main goal is to protect public health and safety by controlling and preventing disease, injury, and disability.
MedLine Plus is an online information service produced by the US National Library of Medicine. The service provides curated consumer health info in English and Spanish. The site brings together information form the National Library of Medicine (NLM), the National Institutes of Health (NIH), and other government agencies and health-related organizations. There is also a site optimized for display on mobile devices.
Another excellent HHS resource is HealthFinder, a website with tools and information to help promote health and wellness.
Harvard Medical School has been ranked the #1 research medical school in the US by US News and World Report every year since the magazine began publishing medical school ratings.
The Cleveland Clinic is a multispeciality academic hospital owned by the Cleveland Clinic Foundation, a non-profit established in 1921. The Cleveland Clinic is recognized as one of the top medical centers worldwide, particularly in the field of technological and management systems, and in the treatment of cardiovascular disease.
The Mayo Clinic is the first and largest integrated non-profit medical practice and research group in the world, employing more than 3,800 physicians and 50,900 allied healthcare staff. The practice specializes on treating difficult cases, and has an excellent reputation for integrated and coordinated, patient-centric care.
The Geisinger Health System is a physician-led healthcare system originally modeled on the Mayo Clinic. Geisinger enjoys a national reputation as a model for high quality integrated care.
Family Doctor is a website operated by the American Academy of Family Physicians with the mission of empowering patients to make informed decisions about their health and wellness; educating parents, caretakers, and families to support healthful behaviors, disease prevention and effective management of common diseases; providing tools to facilitate discussions with family physicians; strengthening relationships with family physicians; and increasing awareness of the importance of family medicine among the public.
NetWellness is a global, community service providing quality, unbiased health information on a variety of health topics (generally condition focused) from our partner university facility (University of Cincinnati, The Ohio State University, and Case Western Reserve University).
The NNT – a group of physicians who developed a framework and rating system to evaluate therapies based on their patient-important benefits and harms as well as a system to evaluate diagnostics by patient sign, lab test, or study. NNT applies the concepts of Numbers Needed to Treat (NNT) and Numbers Needed to Harm (NNH) to dispel misconceptions about how effective or harmful a medication or treatment can be predicted to be. Largely, but not exclusively, based on Cochrane reviews.
Consumer Health Choices – a combined effort between Consumer Reports and a long list of collaborators and partners (including AARP and many professional medical associations) to publish brochures and information on tests, treatments, drugs, supplements, doctors, hospitals, and price reports. Many are from the Choosing Wisely campaign that helps patients and providers focus on high value care and avoid unnecessary or ineffective treatments, tests, procedures, and medications.
Healthcare Bluebook – a site dedicated to pricing transparency, based on location (zip code) and drawn from nationwide claims data.
Surgery Center of Oklahoma – a surgical center, notable for it’s willingness to publish prices for all of their procedures on their website.
If someone has referred you to WebMD, Medscape, the Postgraduate Institute for Medicine, Research to Practice, the National Comprehensive Cancer Network, Medical Education Resources, or PER Group, be aware that these are the top communication company recipients of grants from industry and may have conflicts of interest.
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