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    The Powerhouse Patient’s Homework: Research The Information You Need To Make The Right Medical Decisions For You By Julie Buyon

    By agebuzz Contributing Editor Julie Buyon


    Nearly everyone asks Dr. Google for information about their health concerns, but Powerhouse Patients know how to dig deeper to get information that can help make the medical decisions right for them.


    Use these three questions as a guide for any health research you do on the internet:


    -Is my health history complete and up to date?

    -Can I trust the information on this website?

    -Have I gathered research I think is valuable in a way I can discuss it with my physician? 


    Is My Health History Complete and Up to Date?


    As we have discussed in previous posts, an illness episode is like a chapter in a book – it’s difficult to make sense of the chapter without reading it in the context of the whole book. You are the book. Your health care providers won’t be able to read the entire book that is you, so consider providing them with the “Table of Contents” so they have a better idea of what the book is about.


    The chronological “Table of Contents” of your health history is similar to your medical history, but more concise and will remind you and your providers to keep in mind important aspects of your story when evaluating possible treatments. Also, you may include things that are not part of a usual medical history, such as “history of dental issues – lots of crowns, root canals, fillings” or “frequent heat rashes.” Use this guide from UCSF Health to create a “Body Resumé.


    For example: a few years ago, my oncologist recommended a medication for me, based on a recent study of thousands of people with my kind of cancer. However, after researching the medication, I learned that there is a risk (although a very low risk) of developing a serious jaw condition and that major dental work should not be done while on this drug, which was an injection that lasted for months (so, not as simple as stopping a pill). With my “Body Resumé” top of mind, I remembered that I had a history of frequent major dental work that was not reflected in the “real” medical history that my doctor had. I needed some time to do additional research, including reviewing the proposed medication with my dentist. Doing this research enabled me to have a thoughtful, more personalized discussion with my oncologist about weighing the risks and benefits for me.


    Keeping important aspects of your health history front and center will provide the necessary context in which to evaluate the information you are researching.


    1. Can I Trust the Information on This Site?


    First and foremost: Do not spend a lot of time wandering the internet – there is a lot of misinformation out there and it will only waste your precious time and upset you.


    Focus your research on trusted sites and STOP researching once you have some satisfactory basic information. This should allow you to have sufficient information to bring to your treating physician so that you can have a more in-depth conversation about your specific condition and treatment options.


    Finding Trusted Sites


    What Do These Symptoms Mean?


    I recommend you try the Mayo Clinic Symptom Checker. Yes, there are others out there, but this one is reliable and will provide you with sufficient information to determine your next steps:


    -Do I need immediate care?

    -Which health care providers should I see about the problem? 


    My Most Trusted Places to Start Researching:


    MedlinePlus, from the National Library of Medicine, is a comprehensive resource written in easy to understand language. Always check it out in your search for information. For example, start with Health Topics, and then click on “A” and scroll down to arthritis. There you will find information about symptoms, diagnostic tests, treatments, living well with arthritis along with links to medical journal articles, clinical trials, and more expert information from professional societies and organizations. There is also a Medline section on Drugs and Supplements, which a Powerhouse Patient ALWAYS reads before taking a new drug. The Merck Manual Consumer Version is also excellent and thorough, as is the Patients and Caregivers Version of UpToDate.


    Disease-Specific Non-Profit Organizations:


    My next  “go-to” sites are always those of large, established disease-specific organizations like the American Cancer Society, The Lupus Foundation, The Arthritis Foundation, et al. They focus on their areas of specialization and tend to have current, broad, and user-friendly information. 


    Get Some Personalized Help


    Get some free research help from your local librarian. Many people don’t realize that librarians are expert researchers, and some even have specialized training in health and medical information. Find one through the directory of the National Network of Libraries of Medicine. (nb: It’s a long list so narrow the search by clicking on your state or region on the right-hand side!)  Also, many local disease-specific support organizations (such as Gilda’s Club, local Alzheimer’s Association chapters, etc.) may have collections of printed information (books, brochures, pamphlets, et al) about that disease.


    How to Evaluate Other Sites


    First of all, be confident that all the sites listed as resources on agebuzz are vetted and can be trusted. But if you are doing additional research, here is a tutorial and an article on how to evaluate health information websites from MedlinePlus. Also, the Merck Manuals have developed 6 questions to see where an online resource STANDS:


    • Source: Does the resource cite recognized authorities and provide their credentials?
    • Transparency: Is it open and obvious whether the site’s mission is educational or commercial?
    • Accessibility: Is the site available without registration, and is there a way for users to contact someone with questions or concerns?
    • Neutrality: Is the information available purely as a resource, or does the site benefit financially from what its users do (such as buying products or visiting advertised websites)?
    • Documentation: Is the site updated when needed by recognized medical experts?
    • Security: Can users access content without forfeiting personal information?


    1. Have I Gathered the Research I Think Is Valuable in a Way I Can Discuss It with My Physician?


    Take notes on all the information you are reading and indicate its source so you can return to the information and also share that information source with your health care providers. Instead of saying “I did some research on the internet and it said…” you’ll be able to say “I was reading up on my diagnosis on the American Cancer Society website and my takeaway was… Is this correct?”  


    Incorporate the information you find into your questions for your doctor (in your composition notebook that we recommended in an earlier post). Share what you have learned with your health care providers so that they can clarify, correct, and enhance the information you’ve gathered. And always ask your health care providers where they suggest you get more information! Knowledge can be powerful, and many people feel more confident in their medical decisions after doing some “homework”.


    Remember, your doctor is the medical expert, but you are the expert on you! Research by both experts will help you make the choices about medical treatments that are right for you.


    Julie Buyon is a palliative care patient advocate. She has professional and personal expertise in assisting people with complex illnesses navigate the health care environment. Julie’s role is to help patients feel empowered, and her agebuzz posts are intended to make sure agebuzz readers have all the tools and info they need to advocate for themselves and their loved ones. Julie would love agebuzz readers to email her at [email protected] with any questions or problems encountered with the health care system, and she will do all she can to address those issues in upcoming blog posts. She also welcomes feedback regarding her advice or recommendations. Read all of Julie’s agebuzz posts here and get in touch with Julie now at [email protected].