Why A Patient Network?

Medical researchers and federal health agencies have expressed interest in having a greater input from patients, so that the studies they conduct on prevention and treatment consider the risks and benefits that are most important to patients. We are training patient partners who can provide important input to FDA, NIH, researchers, and others involved in such studies. The Network also includes patients who want to be part of an independent network to raise awareness of patients’ viewpoints and concerns. 

VISION: Ensuring that medical treatments involving drugs or devices are safe, effective, and affordable.

MISSION:  An independent voice to strengthen the safety and effectiveness of pharmaceuticals and medical devices for patients through advocacy and education.

How can patients help improve the quality of health care, including medical tests and treatments?

In the United States, the Food and Drug Administration (FDA) approves drugs and medical devices for specific types of patients and treatments when the agency concludes that the benefits usually outweigh the risks.  That does not mean that all medical tests or treatments are beneficial to all patients, or even to most patients.  It also doesn’t mean that a treatment is safe for all patients.  

 

Equally important, FDA approval does not mean that a new treatment is better than older treatments – or even as good as older treatments.  In fact, the FDA’s decision to approve a new drug or device often does not take into account how effective a drug is compared to other treatments, and never considers the cost of the new treatment compared to other treatments.

 

And yet, new medications and devices are widely advertised, to doctors and to patients.  In addition to ads on TV and in magazines, news stories in the media are often initiated by the companies, who hire physicians and PR experts to generate enthusiasm for their products. As a result, many patients and physicians assume that what they hear about these medical products is true – that they are the best treatment available, and worth whatever they cost.

 

Some patient advocates worry that too many patients are being harmed as a result of advertising and of FDA approval of new treatments that are inferior to older treatments.  Other patient advocates believe that there are many desperate patients and family members who are willing to take big risks in order to try a new treatment that might possibly save their lives.  These perspectives are important to share with researchers and others who are in decision-making positions regarding the availability of medical tests and treatments.

 

Few patients are aware of the opportunities to have their voices heard as the FDA or researchers make important decisions about how to study whether a new medical product is better, worse, or the same as other treatment options. 

 

The USA Patient Network helps patients in the following ways:

1. Train patients/caregivers in understanding the types of clinical trials, the importance of the health outcomes being studied, and the need to test new treatments on all kinds of patients who might need them: women and men, patients in different age groups, and people of color as well as white patients;

2. Share information about available opportunities to provide a patient perspective on what outcomes are important to patients considering whether to use medical products or undergo testing;

 

3. Assist patients in understanding the implications of varying FDA approval criteria and sharing their views with the research and policy communities.

 

4. Train patients/caregivers to share their views at public meetings and written comment opportunities for federal health agencies.

© 2016 by The National Center for Health Research. 

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