We need to find out what health care is and is not working. That's the only way we can change things for the better. But our health care system doesn't do well at measuring health care quality. Right now we rarely learn from patient care. That's because very few breast cancer patients take part in clinical trials. And we don't collect very much data on patient care. We need to turn that around. We need a health care system that always learns from patient care. This means more and better:
This is a whole new way of thinking. It would change what medical research means to the average patient.
What You Can Do:
Then let other breast cancer patients know what you've learned. Clinical trials are not about proving what we already know. They're about asking questions that we don't have answers to. Clinical trials are how we learn to make breast cancer treatment better. They're also how we get answers about causes, prevention, and cures. Well-designed clinical trials are a good way for patients to get care. All breast cancer patients should know about clinical trials they could take part in. Learn more about clinical trials here.
NBCC offers a Clinical Trials Project LEAD® program, an advanced course for Project LEAD® graduates that is offered every other year. Clinical Trials Project LEAD® trains advocates to participate in all levels of the clinical trials process from evaluating trial design to serving on Institutional Review Boards and Data Safety Monitoring Boards. Clinical Trials Project LEAD® graduates represent NBCC in research partnerships. As NBCC partners with more industry clinical trials, we will need a fleet of advocates who are trained to participate in the trial review process.
Trial sponsors pay most of the costs of clinical trials. But sometimes there are "routine patient care" costs that aren't covered. Some states have laws to make health plans pay those costs. If your state doesn't, you can ask your state representative to try to pass a new law in your state. NBCC has written some model state legislation to help get you started.
Ask local doctors and hospitals how you can help them get more patients into quality breast cancer clinical trials. Ask them if they give information on clinical trials to their breast cancer patients. Offer to help them create a system for telling patients about clinical trials.
One way to learn from patient care is to measure the end results of health care. Research that looks at the end results of care is called outcomes research. These results can include changes in:
This research is key to developing better care.24
We need a national health outcomes database. It would help us learn how to best treat patients with all types of health problems. But this kind of program needs a strong national commitment. It needs to involve national leaders and local, state, and national teamwork. It needs data standards and a framework for the information. It needs ways to keep patient data private.
A national health outcomes database would give information we can't get from clinical trials. New treatments usually work better in clinical trials than they work in the real world. This is because clinical trials take place under closely controlled conditions. The outcomes database would tell how treatments work when the average patient sees the average doctor.25
Contact the Health Legacy Partnership to learn more about the group's effort to create a national health outcomes database.
24. Outcomes Research. Fact Sheet. AHRQ Publication No. 00-P011, March 2000. Agency for Healthcare Research and Quality, Rockville, MD.
25. McGlynn, EA. Building a health care information system for decision making in the 21st century. 2000. Unpublished manuscript.