If it’s hard for you to keep up on how best to stay healthy—and manage any medical conditions you have, you’re not alone. Over the last twenty years, the growth in health information has been exponential, as the chart below shows. In fact, over 1.5 million articles were published in medical journals in 2015 alone. Doctors and scientists can’t possibly review all of this literature, which amounts to about 20,000 reports coming out each day, seven days a week! Physicians can only be familiar with a small amount of the total literature. They can’t be up to date on everything. Even within their own specialties, it can be very hard to keep up. This is where you may come in as a determined patient with a very narrow area of health information that is relevant to you. You don’t have to know everything; you just need to know how to access and make sense of research that applies to you.
We understand what you’re experiencing. Together, we have been academic physicians and we are both actively practicing medicine. Dr. Danziger is running an NIH-funded basic science laboratory studying heart failure and hypertension; Dr. Gellens treated renal patients for many years and is knowledgeable in doing clinical trials on dialysis and renal failure. We have experienced firsthand the major shifts in how doctors and patients interact with each other in the age of information and how daunting it can be to find and focus in on the most important information for you in your unique situation. The explosion of disease-oriented sites and associations as well as books directed at patients reflect the changing landscape of health care: pharmaceutical companies, hospitals, and medical clinics are marketing directly to you, the health-care consumer. But do you know how to sort through it all and not drown in conflicting and confusing information? When you consult your doctor and ask questions, do you know what to ask? Are you confident in asking for further explanation? Do you follow up with more questions if you’re not completely clear about what you’re told? Do you understand why certain tests or procedures are being recommended and others are not?
Maybe you follow health news and hear about new research studies. Did you know that they are sometimes misreported—and that you can look up most of these studies and read them online for free or for a modest charge? If you hear about a breakthrough and want to ask your doctor if a new intervention could be helpful to you, we have good news. We will teach you how to make sense of the research that was done and how to figure out whether it applies to your unique situation.
Having fragmented knowledge about a particular condition and common treatments for it isn’t good enough if you want to experience optimal health.
Resources change all the time, and thanks to technology, we’ll see an increase in the number of options you have for quickly accessing the scientific and medical information you need to get a correct diagnosis and know your treatment options. We will also show you how to find the best health-care professionals and facilities for you (and they may not be near your home).
By becoming a determined patient, you can make up for any gaps created by the difficulties your medical team faces in managing the cases of hundreds of patients who have ever-changing conditions and needs. While customized medicine is becoming the norm, you have to start looking at how to customize treatments for your unique situation. Sure, you might end up doing exactly what your doctor prescribes. However, by researching on your own, you can feel much more confident in your decision to follow your doctor’s orders.
In The Determined Patient: How to Be a Powerful Self-Advocate and Take Charge of Your Health, we teach you how to make the best of your visits to your physician (which are often very brief), offering you ideas for asking important questions about your treatment, including what tests and medications you need and what you can do to avoid spending time and money unnecessarily.
Here are just some of the valuable resources you will find in The Determined Patient:
“If you’d like to learn more about your diagnosis, or if you’re not sure it’s the correct one, you might want to check WebMD and www.MedicineNet.com and their related sites. You might also want to check an official site dedicated to the understanding and treatment of your disease or the bodily system it affects, such as the Pulmonary Fibrosis Foundation website or the American Heart Association website, for example.
The National Cancer Institute’s list of NCI-Designated Cancer Centers can be found at https://www.cancer.gov/research/infrastructure/cancer-centers
To discover the latest information about treatments for medical conditions, go to www.UptoDate.com. You can access the same information about your condition that your doctor is reading. It costs about $20 for a seven-day trial subscription, which you can cancel after doing your research.
You can comparison shop for nonemergency testing through these sites:
You can find the website for your state’s medical board through an internet search and use it to double-check that a physician genuinely is board certified. You can also look up doctors on the website of the American Board of Internal Medicine (ABIM), the American Board of Medical Specialties (ABMS), and other boards, such as the American Board of Family Medicine (ABFM), to assure yourself that they are currently board certified.