Patient Resources

Click for Contact Info for Patients


Please Contribute (Links, not Money)!

I compiled these resources based on many years of prescribing information and resources to patients and learning from my patients. It is based on work I did at Beth Israel Deaconess when I created the Patient Resources section of the clinical portal in ~2000 (which has since been taken down). I’d like this to be a dynamic, crowdsourced list of resources, but it won’t be exhaustive–after all there are tens of thousands of health websites. This should just be a starting point.

To that end, please contribute! Use the discussion section at the bottom of the page to make suggestions (or to inform me of bad links). Thanks.

Beth Israel Deaconess and HealthCare Associates

End of Life Planning

Everyone should prepare for the difficult decisions that can come near the end of life. This includes choosing a health care proxy, who can make decisions on your behalf if you aren’t able to do so, and declaring your priorities and preferences for life-sustaining interventions. Particularly good are the six questions recommended by Dr. Angelo Volandes from Massachusetts General Hospital and Advanced Care Planning Decisions:

  1. What kinds of things are important to you in your life?
  2. If you were not able to do the activities you enjoy, are there any medical treatments that would be too much?
  3. What fears do you have about getting sick or medical care?
  4. Do you have any spiritual, religious, philosophical, or cultural beliefs that guide you when you make medical decisions?
  5. If you had to choose between living longer or having a higher quality of life, which would you pick?
  6. How important is it for you to be at home when you die?

Links:

Tips for Healthcare Consumers

Information

Francis Bacon wrote that “Knowledge is power.” Get powerful by becoming knowledgeable about your medical conditions, health, and health care through some of these site.

  • Medline Plus (brought to you by the US National Library of Medicine and the National Institutes of Health, this site has a great many resources and also links to allow you to search the world’s medical literature)
  • HealthFinder (brought to you by US Department of Health and Human Services, this site has many useful resources, as well)
  • WebMD (the most popular commercial health website, which is really quite good)
  • Up To Date for Patients (the patient version of a frequently updated online medical textbook that is very popular among physicians, including me)
  • American College of Physicians Patient and Family Resources (the ACP is my professional organization and they produce some good, evidenced-based resources for patients)
  • Consumer Reports Health (a good website that may help you avoid scames and seek the best treatments possible)
  • ACP/Consumer Reports High-Value Care (ACP and Consumer Reports partnered to produce this site focused on managing costs in healthcare–eventually these costs are borne by you)
  • Choosing Wisely (the American Board of Internal Medicine and Consumer Reports runs this program to spark conversations that help you avoid unnecessary and sometimes harmful tests and treatments.
  • Preventive Health Recommendations (the US Agency for Healthcare Research and Quality has a great tool that presents preventive health recommendations customized to you)
  • Others to be added based on your feedback below.

Clinical Trials

For many serious illnesses there are clinical trials underway that may help you, and your participation will help others with your condition in the future. While it’s difficult to identify all trials that are enrolling patients, these sites are a starting place.

Online Patient Communities

If you have a chronic or serious illness, I strongly urge you to learn what you can from other patients, in addition to health care professionals. Online support communities are the ideal way to do this.

Other Sites of Interest

  • Society for Participatory Medicine (and organizations that I co-founded, it’s dedicated to changing the culture of healthcare to become more collaborative between patients and their providers)

Quick Link for this page: http://drds.us/patientres


 

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