How often does this happen to you? You walk into an exam room and ask the patient what brings him in today, and the reply is something like, “Well, doc, I have stomach cancer.” You do a double-take and scan the patient’s chart, looking for test results or notes from a referring provider. Finding nothing, you ask the patient for more information on his diagnosis. To your surprise/dismay/frustration, he says, “Naw, I Googled my symptoms and that’s what I came up with.”
While you can’t control the Web-surfing your patients do before they present, you can influence their information-seeking behavior once you’ve delivered a diagnosis and/or treatment plan. You know they (and their family/caregivers) will have questions about the patient’s condition and how it can be managed for the long term. You hope they’ll come to you for answers. But since they are likely to use the resources at their fingertips, you at least want to ensure the information they receive is accurate and trustworthy.
With that in mind, we asked several Clinician Reviews board members to share the Web sites that they recommend to their patients. Some, including Cathy St. Pierre, PhD, APRN, FNP-BC, FAANP, and Ellen Mandel, DMH, MPA, PA-C, CDE, cited behemoths such as the Mayo Clinic Web site (www.mayoclinic.com/health-information), lauding it for being up to date, easy to access, and “clear and data-driven.” Other board members, as you’ll see below, suggested specialty-specific sites.
Freddi I. Segal-Gidan, PhD, PA, may speak for many clinicians when she explains, “We offer these [resources] to patients and families as part of health education, acknowledging that learning about someone’s condition is the first step to better understanding what they are experiencing and how this may change over time—since most of what we deal with are progressive, lengthy illnesses and chronic disease management.”
If you have reliable Web-based resources that you recommend to your patients, please visit us on Facebook (www.facebook.com/ClinRev) to share them!
Alzheimer’s Disease
ADEAR—Alzheimer’s Disease Education and Referral Center
www.nia.nih.gov/alzheimers
Who recommends it: Freddi I. Segal-Gidan, PA, PhD
Why: Operated by the NIH/National Institute on Aging specifically to provide consumers with current, accurate, state-of-the-art information about Alzheimer’s disease and dementing illness
Also recommended: Alzheimer’s Association (www.alz.org); Family Caregiver Alliance (www.caregiver.org); UCSF Memory Center for information on frontotemporal dementia (www.memory.ucsf.edu/ftd); Foundation for Health in Aging (www.healthinaging.org); Kaiser Family Foundation for information about Medicare, Medicaid, and health policy related to aging (www.kff.org)
Cardiology
Cardiac Arrhythmias Research and Education Foundation, Inc (CARE)
www.longqt.org
Who recommends it: Lyle W. Larson, PhD, PA-C
Why: Provides an overview of long QT syndrome (eg, management, genetics); includes links to a study registry for persons with implantable cardioverters-defibrillators who are participating in sports and a complete list of medications to avoid in this patient population. The information is collated and disseminated by health care experts in this field and is updated continuously as new data emerges.
Also recommended: CredibleMeds™ (www.crediblemeds.org)
Dermatology
American Academy of Dermatology: For the Public
www.aad.org/for-the-public
Who recommends it: Joe R. Monroe, MPAS, PA
Why: Provides patient information about a specific topic or diagnosis that is reliable, up to date, and in understandable language.
eMedicine
http://emedicine.medscape.com
Who recommends it: Joe R. Monroe, MPAS, PA
Why: The information is current and written by authoritative dermatologists or other relevant specialists. References are copious and relevant, and links in the text guide readers to equally good information on related topics.
Caveats: The only problem with eMedicine is that it’s jargon-heavy and meant only for those who are comfortable with the terminology. I reserve this suggestion for more medically erudite patients (eg, nurses or PAs).
Diabetes
DiabetesMine
www.diabetesmine.com/
Who recommends it: Christine Kessler, RN, MN, CNS, ANP, BC-ADM
Why: This is an award-winning blog by an individual with type 1 diabetes, but it has something for every diabetic patient and his/her family. Really awesome. I recommend it to my patients, and some of them blog for it!
Also recommended: American Diabetes Association (www.diabetes.org/)
Nephrology
American Association of Kidney Patients
www.aakp.org
Who recommends it: Jane S. Davis, DNP, CRNP
Why: Their information is written for and by kidney patients. It is for all patients with kidney disease, not just dialysis patients. They offer free publications that emphasize living with kidney disease; these pubs are attractive, with realistic information.
Kidney School
www.kidneyschool.org
Who recommends it: Jane S. Davis, DNP, CRNP
Why: This site offers about 16 modules, each on a different topic ranging from dialysis options to sexuality. It is for patients and allows them to pick the topic they want and view the module as often as they wish.
National Kidney Foundation
www.kidney.org