Since you managed to find us, chances are you know of other patient-oriented websites and blogs. I’m very interested in hearing about your experiences as a web-using patient. Here are some sites that I recommend.
The National Institute on Aging website has an excellent section, called “Talking with Your Doctor: A Guide for Older People.” The philosophy pretty much parallels what you find here and in our book–maybe with a little less detail, less reference to recent findings in the literature, and more tips geared to older patients, such as the suggestion to take your eyeglasses and hearing aid on your appointment.
The Agency for Healthcare Research and Quality (AHRQ)–which soon could become a major part of the Department of Health and Human Services, equal to the FDA, NIH, or CDC, or could instead become a victim of partisan budget wrangling–promotes an approach to patient-centered care called CAHPS. That’s short for “Consumer Assessment of Healthcare Providers and Systems.” The main idea is to use surveys of patients’ experiences to rate health care providers. Check it out. (Also see AHRQ’s quick tips.)
You know that major diseases have diverse websites and online discussion groups. A good example is that of the Leukemia and Lymphoma Society. One site that many people appear to find very useful is that of the Association of Cancer Online Resources (ACOR). Patient advocates with an interest in cancer care speak highly of it. Similarly, Caring Bridge is geared to helping patients and families, especially those affected by cancer.
Many of the disease-specific sites and discussions fall under the mantle of “Inspire.” This group, based in my hometown of Princeton, NJ, also runs a blog. The group just got a new communications director, John Novack, who conceivably could develop forums that cut across diseases more effectively. Impressively, Novack’s first post was about Ulysses S. Grant, for whom our own Siamese cat is named. (Sadly, the cat and his brother Sherman were not visibly moved by the news.)
Similarly, Daily Strength is a consortium of support groups, a little less disease-specific. For example, topics include “Loneliness” and “Parenting.”
(Here I acknowledge my erstwhile blog adviser, Larry Blumenthal of Open Road Advisors, for helping me identify some of these sites.)
As you research particular symptoms or diseases (please see Section 4 of my book, the section on “Doing Your Own Research”), you will be drawn to sites maintained by outfits like:
- the Mayo Clinic
- the federal government in general
- the research-oriented National Institutes of Health
- National Institute of Mental Health.
For drug-related issues, visit the Pharmaceutical Research and Manufacturers Association (including the section on how to obtain discounts on drug purchases if you’re needy) and the Generic Pharmaceutical Association. (Disclosure: the last has been a client.)
On disease prevention, the world gold standard is held aloft by the U.S. Centers for Disease Control and Prevention (CDC). By far, most of the huge gains in longevity in the United States since 1900 resulted from improvements in public health, not in personal health care.
Final word: Please go viral. Forward this information–and a tip about this site, http://www.talkingtoyourdoc.wordpress.com–to your friends and colleagues!