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
- Beth Israel Deaconess Medical Center
- HealthCare Associates
- BIDMC Find-a-Doc
- PatientSite (this is the only way you should be sending Dr. Sands e-messages–do not use e-mail)
- Before your annual preventive health evaluation:
- Review your prior notes and labs through PatientSite
- Download and complete Dr. Sands’ Annual Visit Form (to ensure we manage all your concerns and have an efficient visit)
- Review your advanced directives/end of life planning (see below)
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:
- What kinds of things are important to you in your life?
- If you were not able to do the activities you enjoy, are there any medical treatments that would be too much?
- What fears do you have about getting sick or medical care?
- Do you have any spiritual, religious, philosophical, or cultural beliefs that guide you when you make medical decisions?
- If you had to choose between living longer or having a higher quality of life, which would you pick?
- How important is it for you to be at home when you die?
- Advanced Care Planning Decisions
- Caring Connections
- The Conversation Project (Institute for Healthcare Improvement)
- Engage with Grace
- Get Palliative Care
Tips for Healthcare Consumers
- Medical Library Association Consumer Resources
- Finding and Evaluating Health Information on the Web
- Deciphering Medspeak (or this one may be easier to read)
- Medical Information on the Internet (tutorial)
- Understanding Medical Words (tutorial)
- Evaluating Internet Health Information (tutorial)
- Agency for Healthcare Research and Quality – Patients and Consumers
- Preparing for Your Doctor’s Appointment from the Partnership for Healthcare Excellence
- Massachusetts Health Connector (health insurance exchange)
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.
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.
- ACOR.org (cancer)
- Inspire.com (many other diseases)
- Patients Like Me (a community that allows communities to aggregate information about symptoms and the impact of treatments)
- This site is maintained by e-Patient Dave, who has compiled a great list of all support communities
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)