How can I participate in the Rochester Epidemiology Project?
Patients who visit a participating health care clinic or hospital in southeastern MN for the first time are asked to sign a form that gives permission for their medical record to be used for research. If you give permission for your information to be used for research, your data automatically becomes part of the REP, and you allow medical scientists to use your medical information to conduct research without any additional demand on your time.
Is my medical information protected?
Yes, your safety and the confidentiality of your medical information are protected. All studies using the Rochester Epidemiology Project are required to be reviewed by a group of experts in patient's rights and safety called the Institutional Review Board or IRB. All studies conducted with the Rochester Epidemiology Project need to pass this test with both the Mayo Clinic IRB and the Olmsted Medical Center IRB. Researchers who look at your record or contact you for further information will keep your information completely confidential. You will never be individually identified in any report about a disease or symptom. Information from any given patient is always combined with information from many other participants so that it is impossible to tell which persons participated in a study. For example, it would never be reported that "John Peterson had a heart attack on January 1, 2005." Instead, an investigator might report, "20 men had heart attacks in January, 2005, in Olmsted County, MN."
Will researchers be calling me?
Most often, researchers will not contact you for further information. Instead, they will only look at your medical record and add your information to the information of other participants in the study. However, you may be contacted occasionally to provide further information for a specific research study. The initial contact is made by mail, and you may be invited to participate in a telephone interview or in an in-person visit. You may always refuse to participate in that additional part of the study. You can also change your mind at any time and send a letter to your clinic or hospital asking that your records not be used for research. Your current and future medical care will not be affected whether or not you participate. The choice is yours.
What are the advantages of being involved in the Rochester Epidemiology Project?
You can contribute to medical research that can improve the health of people in your community and throughout the world. REP researchers have published over 2,000 studies on diseases ranging from heart disease to cancer to strep throat. These studies have frequently changed how diseases are understood and treated. Your own past medical care may have been improved because of people before you who gave permission to use their data for medical research. For example, a study by Dr. Barbara Yawn demonstrated that screening and follow-up programs could greatly increase the recognition and treatment of postpartum depression (i.e., a depression that may develop after the delivery of a child). The program continues to be a part of care for all women who have babies in Olmsted County.
By agreeing to participate in the REP, you can help researchers discover factors that cause or help prevent diseases, and identify new ways to treat or prevent diseases. Your medical information is important to the REP, because each individual piece of information helps researchers create a complete picture of healthcare in our community.