Patient empowerment doesn’t just mean finding information and handing it out. It also means showing patients where to turn for relevant clinical findings. Even on the policy circuit, it’s useful to have quick access to sources of accurate, in-depth, relevant data.
For many patients, a customized list of URLs is the best way to learn about diseases, clinical trial options, and other online information. Professional analysis of these sources gives patients a package to share with doctors and work collaboratively toward optimal care.
Still, a list of helpful sites is a good place for patients to start looking at a newly-diagnosed condition and the first-line sources for leading edge care. This is that list.
Clinical Information
National Institutes of Health: nih.gov
NIH listing of clinical trials: clinicaltrials.gov
PubMed research tools: www.ncbi.nlm.nih.gov/pubmed
National Organization for Rare Diseases: nord.org
Basic clinical disease information: webmd.com
Cancer treatment options and patient support: acs.org
Policy Information
Kaiser Family Foundation kff.org
US Agency for Healthcare Research and Quality: ahrq.gov
Pharmaceutical Information
Medicare Part D outpatient drug coverage: medicare.gov
Pharmaceutical clinical trials: fda.gov
Drug Side Effects: fda.gov/medwatch
Coverage and Reimbursement Information
Financial aid for drug costs: Partnership for Prescription Assistance: pharma.org/ppa
Medicare information for patients and others: 1-800-MEDICARE
