Often when I see a new patient, they confess early on in our conversation that they googled their symptoms already. They usually preface their admission with an apologetic “I know doctors hate when patients do this, but. . .”
My response is always the same: I know people search for answers to their medical questions online. I really don’t mind. In fact, I think a patient who comes to their appointment prepared gets more out of our limited time together. But there are some types of research that are more useful than others.
In my conversations with my colleagues, I have discovered that what they find frustrating is not a thoughtful, well-read patient, but rather when the patient has already diagnosed themself or decided on a course of action before our discussion has begun. Doctors don’t only have knowledge of specific diseases; we also have experience with how those diseases manifest in many different people, as well as an understanding of the real-world use of different treatment options that we want our patients to benefit from.
There is a lot of information on the internet that is reductive, not backed by research, or just plain false. Add to that, the experience of another patient may not apply to you even if you have the same diagnosis. What types of research can help you get the most out of your time with your doctor? And how can you sift through the reams of science, pseudoscience, comments from patients, and sales pitches to find what is useful and leave the rest behind?
What should the goal of your research be?
The most helpful research you can do prior to a visit with your doctor is that which helps you develop the questions you want to ask your doctor at your visit.
Imagine for a moment that you have started experiencing symptoms that you think are related to perimenopause. You know that hot flushes and night sweats are common perimenopausal symptoms, but perhaps there are other symptoms you have experienced that might also be related to perimenopause. You may want to research what symptoms are associated with perimenopause so that you can create a more complete list of your symptoms that could be related.
Another useful thing to research are different treatment options used to treat your symptoms. The goal of this type of research is not to decide which treatment you want to request at your visit. Rather, you want to familiarize yourself with the choices and consider whether you have any questions about them. In our perimenopause scenario, you might read a little bit about different hormonal and non-hormonal treatment options. This might lead you to ask your doctor where an estrogen patch is worn and how long it is left in place. If you are sensitive to adhesives, like me, you might ask your doctor if it is common for women to develop skin irritation with different estrogen patches.
In researching treatment options, you will often encounter a list of side effects that may help you to formulate questions. Patients interested in weight-loss medications like semaglutide (Ozempic/Wegovy) will often ask me how many of my patients experience side effects like nausea or vomiting. An incredibly savvy patient with Crohn’s disease once asked how many of my patients taking semaglutide have Crohn’s or ulcerative colitis and what those patients’ side effects were.
Google is not the best place to start
I, like many of you, google questions several times a day. But I never use Google for medical questions. This is because its algorithm doesn’t prioritize the most reliable information. It can be difficult to judge whether the site you land on as a result of your search is trustworthy or not.
When I googled “semaglutide side effects” just now, two of the top three results were not credible sites for medical information. The third was Ozempic.com, the marketing site for the medication, which may be a source of good information (more on that in a minute), but it is important to remember that the purpose of the site is to support sales of the medication.
If Google is not the place to start, what is? I think this depends on the type of information you are looking for.
When you are making sense of symptoms
If you are trying to research a group of symptoms or understand the symptoms of a certain disease, it is often best to start with a reliable general medical site. For example, the Mayo Clinic offers a comprehensive patient site that includes the ability to search by symptom or disease and offers information that spans all different areas of medicine, including surgery, neurology, gynecology, and ophthalmology.
If your symptoms seem related to a specific body system — a good example might be irregular vaginal bleeding — you might start with a more specific resource. In the case of vaginal bleeding, the patient site from the American College of Obstetricians and Gynecologists is a reliable resource. When it comes to symptoms related to pregnancy and women’s hormonal health — shameless plug — ParentData is a great place to start.
When you already have a diagnosis
Once you have a diagnosis, or you know what body system is involved, resources provided by specific medical associations can be helpful. Nearly every professional association, from the American Academy of Pediatrics to the Endocrine Society to the Menopause Society, offers a searchable suite of patient resources. Those include information about diagnostic testing, symptoms, and treatments. These resources can be especially helpful if you have been prescribed a specific test or treatment and want to know what to expect.
Drug marketing sites (as in the Ozempic site above, they are nearly always of the form drugname.com) are trying to market a drug, but they can also provide useful information. They typically offer some sort of savings program, which can help you get a sense of what you might expect to pay for a medication. If you choose a more expensive medication, these offers can help you defray the cost of nearly all brand-name medications. When a medication is administered by injection or through the skin in a patch or gel, marketing sites often include instructional videos that can give you a sense of what taking the medication might be like, or pictures showing the actual size and appearance of a patch or gel.
What other sites you should avoid
In general, I recommend avoiding most open forums where people share their medical information and experience in an unrestricted way. There are exceptions — for example, online support groups for patients with a specific diagnosis, such as Breakthrough T1D (formerly JDRF) for patients with Type 1 diabetes — but typically these types of forums do not offer evidence-based information. I also recommend avoiding sites that suggest that the only solution to your symptoms is purchasing their branded supplements; these claims are almost never true.
If you focus your research on helping you identify the questions you would like to ask during your visit, you are likely to find resources that provide high-quality evidence-based information.
The bottom line
- Conducting some research before your visit to your doctor can help you identify questions you would like to address during your visit.
- General patient websites offered by respected hospital systems like the Mayo Clinic can be a great place to start your research.
- Patient resources from medical societies such as the College of Obstetricians and Gynecologists, the Endocrine Society, and the Menopause Society can be helpful when looking for information regarding specific conditions or treatments.
- While there are exceptions, patient forums, and sites marketing expensive supplements, are not often good sources for evidence-based information.
Log in