How to Find Credible Medical Insights Online
I heard from my mother-in-law today that she was diagnosed (dx) with coronary heart failure. It sounds very ominous and scary just saying it out loud. Many dx carry a heavy weight including cancer and any form of chronic illness. It is important to learn more about a loved one’s (or your own new diagnosis) and not by just surfing the Internet or you can end up down a rabbit hole until your prognosis is ultimately death. You know, you’ve done it before!
I want to share with you how NOT to get freaked out! You can become an educated healthcare consumer in many ways. It is important to first learn how to find credible medical information and I have a few resources and tips of where you can start, and it’s not by calling Dr. Google.
Today, we have an explosive amount of information at our fingertips. But we must be careful with the power of the Internet to use it wisely for our health as we advocate and seek answers for ourselves. Here are a few tips from my recent interview with Trisha Torrey, author of You Bet Your Life: The Ten Mistakes Every Patient Makes:
Follow the money – In the provider scenario, ask yourself “who is paying who” to best judge who can help you best.
Find a second or third confirmation of a new diagnosis – Do your due diligence before trying anything new and read your medical records carefully to ensure you are not misdiagnosed.
The HON Code – HON developed a set of legal, ethical, and practical criteria for websites. Make sure any website you use has an HON badge and verify it before following their advice.
Peer-reviewed – Medical scientists share information in two primary ways – presenting findings at conferences and publishing in medical journals. These journals are typically peer-reviewed, meaning other specialists must attest it is evidence-based. Be very skeptical of therapies that are not peer-reviewed.
Discuss any and all standards of care with your doctors.
Medical Research Information Websites You Can Trust
The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.
National Institutes of Health website: is a good place to start for reliable health information.
American Medical Association: It is the largest associations of DOs, MDs, and medical students in the US. Their mission is to promote medicine, science, and betterment of public health. It is also behind the Journal of the American Medical Association.
CDC.gov: This is a great website for a wide range of health conditions but it's particularly excellent for information, stats/epidemiology and health epidemics that pop up in the news.
Heart.org: Cardiovascular disease is the leading cause of death in the US. For all of your heart health questions, this is a great place to start.
Healthline: The aim of the site is to find content that is empowering and empathetic and then present it in a manner that ordinary users can understand.
HealthyChildren.org: This site provides accurate, easy-to-understand information about health conditions that affect kids. It also gives health tips and suggestions to parents.
FamilyDoctor.org: This site is excellent for covering basic health conditions that you see your family doc for.
Mayo Clinic: Its data is always updated and contains all the latest treatment options for patients. Additionally, if you wish, you can get a list of reliable references, which are found in each article so users are assured that it is based on scientific facts.
MedlinePlus: Designed by the National Library of Medicine to help you research your health questions.
Medscape Reference: This site provides information on this topic (you may need to register to view the medical textbook, but registration is free).
PubMed: A searchable database of medical literature and lists journal articles.
MeSH® (Medical Subject Headings) This is a terminology tool used by the National Library of Medicine.
In-depth medical information on rare genetic diseases can be found at the following sites:
GeneReviews: This group provides current, expert-authored, peer-reviewed, full-text articles describing the application of genetic testing to the diagnosis, management, and genetic counseling of patients with specific inherited conditions.
Genetics Home Reference (GHR): This website is maintained by the National Library of Medicine.
Online Mendelian Inheritance in Man (OMIM): This site is a catalog of human genes and genetic disorders. Each entry has a summary of related medical articles. It is meant for health care professionals and researchers.
Orphanet: Access to this European database reference portal for information on rare diseases and orphan drugs is free of charge.
NORD’s Organizational Database (ODB): This database was established to provide organizations and resources for patients and families affected by rare diseases. Organizations can be included in the ODB if they provide free information and/or services helpful to individuals and families affected by one or more rare diseases; have a website; are non-commercial; are transparent regarding sponsors or sources of funding; and are transparent regarding sources and/or reviewers of medical information provided on their websites and/or publications.
GenomeConnect: This site is an online tool people can use to share their genetic test results and health information with researchers and healthcare providers. You can also connect with other individuals who have a similar diagnosis or related symptoms.
MyGene2: Similar to GenomeConnect, MyGene2 is an online tool that families interested in sharing their health and genetic information can use to connect with other families, clinicians and researchers.
RareConnect: This site has online communities for patients and families with rare medical conditions so they can connect with others and share their experiences.
RareShare: This site too offers an online social hub dedicated to patients, families and healthcare professionals who are affected by rare medical disorders.
DNAandU.org: A website and blog that collects firsthand stories from people making tough decisions about using genomic (DNA) information in their own healthcare choices.
Medical Crowdsourcing
If you’ve bounced from doctor to doctor with a difficult–to-diagnose condition or live in a rural area, there are many reasons why you might seek out expert medical advice from a larger community of like-minded people. While patients have long turned to social media to seek answers to their medical questions, there are now more reputable sources than Facebook. Seeking feedback from other patients or getting a second opinion is as easy as going online. While many non-profits offer hope and information, a few tools are very helpful in bringing the wisdom of many to your fingertips. Medical crowdsourcing sites and apps are gaining momentum and are powered by AI, including patient-focused sites like CrowdMed, StuffThatWorks, and PatientsLikeMe. They share the same mission of empowering patients, reducing misdiagnosis, and improving medicine by gathering the greater power of patients’ experiences.
As you can see, there are plenty of resources so you don’t have to dial up Dr. Google for a house visit. Become a smart patient first. If you must, try Google Scholar – a simple way to search for scholarly literature online through your most trusted search engine.
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