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EMMA privacy

WSU – Notice of Privacy Practice

Your Rights Our Responsibilities

This Notice describes how medical information about you may be used and disclosed and how you can get access to this information.

Please review carefully

Changes to the Terms of This Notice
We can change the terms of this notice, and the changes will apply to all information we have about you. The new notice will be available upon your request, in our office, and below.
Updated: March 2023

This Notice of Privacy Practices applies to the following organizations:

Washington State University
Psychology Department – Link to departmental website 
Maureen Schmitter-Edgecombe
Phone: 509-335-4033
Fax: 509 – 335 – 2334
PO Box 644820
Pullman, WA 99163


Your Rights

When it comes to your health information, you have certain rights. This section explains your rights and some of our responsibilities to help you.

By law, researchers must protect the privacy of health information about you. In this form the word “you” means both the person who takes part in the research and the person who gives permission for another person to be in the research. Researchers may use, create, or share your health information for research only if you let them. This form describes what researchers will do with your information.

Please read it carefully. If you agree with it, please sign your name at the bottom. You will get a copy of this form after you have signed it.

If you sign this form, information will be shared with the people who conduct the research. In this form, all these people together are called “researchers.” Their names will appear on the research consent form that you sign.

The researchers will use the health information only for the purposes named in this form as described below:

1. What “health information” includes:

• All information about you that is collected during the research study. This might include the results of tests or exams that become part of the study records; diaries and questionnaires that you might be asked to fill out as part of the study and other records from the study.

• All health information in your medical records that is needed for this research study. These might include the results of physical exams, blood tests, x-rays, diagnostic and medical procedures and your medical history.

2. What the researchers may do with health information:

• The researchers may use and create health information about you for the study.

• They may also share your health information with certain people and groups. These may include:

o The sponsor of the study and its representatives

o Government agencies, review boards, and others who watch over the safety, effectiveness, and conduct of the research.

o Other researchers when a review board approves the sharing of the health information.

o Your health insurer if they are paying for care provided as part of the research study.

o Others, if the law requires.

• The listed sponsors are identified as:

o Department of Defense

o ORSO#AWD002175

o Grant title: A Digital Memory Notebook to Support Everyday Functioning,Decrease Caregiver Burden and Track Health Status

o PI name on grant: Maureen Schmitter-Edgecombe, Diane Cook

3. Removing your name from health information:

• The researchers may remove your name (and other information that could identify you) from your health information. No one would know the information was yours.

• If your name is removed, the information may be used, created, and shared by the researchers and sponsor as the law allows. (This includes other research purposes.) This

form would no longer limit the way the researchers use, create, and share the information.

4. How the researchers protect health information:

• The listed researchers will follow the limits in this form. If they publish the research, they will not identify you unless you allow it in writing. These limitations continue even if you

take back this permission.

• The listed researchers are identified as:

Name and WSU Email:

Reanne Chilton

Justin Frow

Sarah Norman

Callan Lujan

Brooke Beech

Catherine Luna

Maureen Schmitter-Edgecombe

Diane Cook

Bryan Minor

Jason Minor

Brian Thomas

Samina Rahman

Jamie Li

Chance Desmet

Carolyn Pagan

Nicole Whitely

Keira Monaghan

5. After the researchers learn health information:

• The limits in this form come from a federal law called the Health Insurance Portability and Accountability Act. This law applies to your doctors and other health care providers.

• Once the researchers get your health information, this law may no longer apply. However, other privacy protections will still apply.

6. Storing your health information:

• Your health information may be added to a database or data repository. This permission will end when the database or data repository is destroyed.

• You do not have to sign this permission (“authorization”) form. If you do not, you may not be allowed to join the study. You may change your mind and take back your permission at

any time.

• To take back your permission, contact the study manager (name, contact method):

o Sarah Norman email:

o Justin Frow email:

o Lab Phone: (509)335-4033

• If you do this, you may no longer be allowed to be in the study. The researchers will keep any information in the study record they already collected.

• Your authorization will expire when the goals of the study have been met.

• The listed research goals are identified as:

o Examine how older adults who are noticing changes in their memory or thinking abilities learn to use a personalized video-based training program to maintain routines and independence.

o Utilize a web-based training system to teach participants to use the


o Use EMMA to assist individuals with organizing and scheduling daily activities, recording events that may need to be remembered, monitoring health information and recording performed activities.

• During the study, you will not be allowed to see your health information that the researchers may place in your medical record. After the study is finished, you may see this