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COMMUNITY

How can I participate in the REP?

Patients who visit a participating health care clinic or hospital in Minnesota or Wisconsin for the first time are asked to sign a form that gives permission for their medical record to be used for research. If you elect “yes” or simply do not respond to a request for research authorization, your data automatically becomes part of the REP.  When your record is part of the REP, it means that medical scientists are able to use the 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 must be approved 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 be approved by 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 a report about a disease or symptom. Information from any given patient is always combined with information from many other patients 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, “50 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 in research.

 

What are the advantages of being involved in the REP?

When you give permission for your records to be used for research, you are contributing to medical research that has the potential to improve the health of people in your community and throughout the world. REP researchers have published over 2,600 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 post-partum follow-up program continues to be a part of care for all women who have babies in Olmsted County.

 

How does the REP interact with community members in Minnesota and Wisconsin?

In the Fall of 2011, a group of 21 community members from southeast Minnesota were selected to participate in a facilitated event to obtain recommendations about REP operations and plans for expansion. A subset of this group continues to meet on a quarterly basis as a formally organized community advisory board (CAB). The mission of the CAB is:

To share personal perceptions, expectations, and concerns with the community and REP leadership as informed representatives of the local community.

 

The CAB has participated in various community outreach activities such as the Rochester Women’s Fall Expo and the Good Life Expo. In addition, the CAB has provided a community perspective on how to raise awareness about the Rochester Epidemiology Project and medical research.  Specifically, the CAB has advised the REP on such things as the development of a Facebook page and improvements to the REP website.  To learn more about upcoming CAB activities and opportunities to join the CAB, please email: info@rochesterproject.org.

 

 

 

Additional information about the REP is listed in this Brochure (updated June 2016).

 

Additional information about the Community Advisory Board is available in this Community Advisory Board REP Handbook (updated December 2014).

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