Research, HIPAA and You
On April 14, 2003, the Health Insurance Portability and Accountability Act (HIPAA) laws went into effect. This new set of Federal laws was designed to protect your privacy in health care. In short, all medical providers (including MD Anderson) have the same high standard they must meet in preventing your personal information from being disclosed to people who do not have the right to see it.
MD Anderson has always been a leader in standing up for patients' rights since it was founded in the 1940s. Protecting your healthcare privacy is not new to us. What is new is the process by which you may give or withhold your consent to participate in research studies.
The care that we provide our patients today is the result of decades of study. Thousands of people have volunteered to let our clinician-scientists learn from them and their experiences. What we learned in those years has become progress today and hope for the future. The patients we treat today have those volunteers to thank for their treatment options.
Volunteering can be simple or it can be challenging. Some volunteer by taking part in a clinical research trial of a new drug, or combination of therapies. Others allow a blood or tissue sample to be taken. Some patients and their families have shared their histories with the Epidemiology Department, in an effort to find the cause of pancreatic cancer in addition to the cure. Volunteering can even be as simple as allowing us to keep parts of your medical record in a special database where scientists can study groups of patients at one time. No matter what form of volunteering you choose, you can rest assured that only those few specialists directly involved in studying pancreatic cancer will have access to your information--and it will not go any further without your permission.
If you would like to volunteer to help us build a brighter future for pancreatic cancer treatment, let your doctor or nurse know when to you come to MD Anderson. You may be asked to sign a special consent form to clarify your choice. Due to the changes in HIPAA laws, there may be more than one form required.
Volunteering for a study does not change your rights as an MD Anderson patient. You can change your mind at any time. Plus, whatever choice you make, you will receive the best, most appropriate care we have to offer to you.
By volunteering to be a part of an ongoing study of cancer at MD Anderson, you join the ranks of other pioneers who teamed up with the medical professionals to work for the cure. Future generations will be thanking you for it.