The Center for Patient Partnerships
Self-Advocacy Tools
Treatment
If you, a family member, or friend is in active treatment for a life-threatening or serious chronic illness, you likely have many questions. The following resources provide a starting point.
Understanding treatment options
- Agency for Healthcare Quality: Next Steps After your Diagnosis - Finding Information and Support
- American Cancer Society, Making Informed Decisions: A helpful guide which addresses questions from a patient's perspective such as: is there time to gather additional information, how do I find additional information and, how do I tell family, friends and my children?
- American Cancer Society, Treatment Decisions: Answers to questions dealing with what treatment is best for you, what methods have proven most effective, what to ask your physician, what's new in research and what you can expect after treatment is over.
- Getting Involved in your Treatment Decisions - Mayo Clinic: Ground rules for being an active participant in the decision making process about your cancer treatment plan.
Referral for treatment
- Comprehensive Cancer Centers: These are sites around the country affiliated with the National Cancer Institute (NCI). For a listing based on location: .
- Choices, Marion Morra and Eva Potts (can be found in CPP library)
Choosing a treatment
- Agency for Healthcare Research and Quality: Next Steps After your Diagnosis - Finding Information and Support
- Agency for Healthcare Research and Quality: Your Guide to Health Care Quality
Support for your treatment decision
- UW Health Patient Support and Services: Links to information on support groups and services, classes, grief support services, carewear and wigs, Integrative Medicine and nutrition services.
- The Leukemia and Lymphoma Society - Find Support: Links to current information about CML therapies and clinical trial updates, support services for patients and family members and educational programs.
- Dane County Support Services: Links to sixteen different support groups and services for cancer patients and patients with life-threatening or chronic physical illnesses. Also includes a link to "Transportation Air" and United Way 2-1-1.
- National Support Organizations: Links to national support groups and services including the Lance Armstrong Foundation and Share the Care.
Clinical trials
- NCI Clinical Trials Questions and Answers: Fact sheet covering types of clinical trials, who sponsors them, how they are conducted, how participants are protected and who pays.
- NCI - Information about Clinical Trials : Excellent overview of clinical trials: Topics include what is a clinical trial, questions to ask your doctor, protecting participants in clinical trials, ten things to know about cancer treatment trials and eleven things to know about cancer prevention clinical trials.
- Suzanne's Rules for Clinical Trials: Topics include: Doing research for a patient on a medical topic, overview of clinical trials, tips for communicating with your patient/client, information about Comprehensive Cancer Centers and alternative therapies.
- Clinical Trials Patient Worksheet
- UW Health Clinical Trials Information: Link to Clinical Trial information including Clinical Trial ABCs, phases of a clinical trial, questions to ask your MD about Clinical Trials and open Clinical Trials.
Identifying alternative therapies
- What is Complementary and Alternative Medicine (CAM)? (Source: Research/Clinical Trials by Suzanne Lee, M.D.) Description of alternative therapies.
- Selecting a CAM practitioner (Source: Research/Clinical Trials by Suzanne Lee M.D.) See also www.quackwatch.org to check on a specific practitioner or therapy.
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