Signing up with PrivateAccess™ is free, and it just takes a few minutes. Once you’ve opened an account, you’re a few steps away from completely managing the privacy of your health information, and connecting, on your terms, with clinical researchers.

Here’s how the process works:

1. Basic Sign-up

To create a PrivateAccess™ account, you will be asked to provide some information about yourself, including your name, phone number, and email address. We will verify your email address by sending a message to the address you provide.

2. Account Information

You can create a PrivateAccess™ account to manage your own health information, or for your children who are younger than 18. You may create a different profile for anyone associated with your account. Each profile will contain the health information associated with that person, and its own Privacy Preferences.

3. Privacy Preferences

Setting your Privacy Preferences (or giving others “private access” rights) is the key to managing your health information. There are two types of Privacy Preferences: Search Preferences and Contact Preferences. This is a two-part process:

1. Select a Guide – We’ve invited some of the best-informed patient advocates to help you decide how to set your Privacy Preferences. You may read about each of them, and select one to make recommendations and help guide you through the process of setting your preferences. If you’d rather, you can bypass this step and set your preferences manually.
2. Set Your Preferences – You have two decisions to make for each researcher or group of researchers. First, you decide who may view your health information. These “Search Preferences” determine whether your health information will appear when that researcher (or group of researchers) performs a search that’s relevant to you. It’s important to note that researchers conducting searches will only see your health information—not your name or contact details. We “anonymize” your account in search results by removing your name and contact information, and replacing them with random alphanumeric codes. Next, you decide the conditions under which those researchers may contact you. These “Contact Preferences” are needed when a researcher performs a search and would like to discuss your eligibility for and interest in a clinical trial or study. When you set Contact Preferences, you can also ask for advance notice about a researcher who wants to contact you; so you can decide about these opportunities as they come up.

4. Basic Health Information

Now that you’ve set your “private access” rights for researchers, we’ll ask you some basic questions about your health and lifestyle. We will then present you with a detailed health questionnaire, that’s pertinent to your particular condition, or to that of your child. Your answers to the detailed questionnaire will help researchers understand whether you (or your child) are good candidates for their clinical trials and studies. This information will only be available to the researchers that you’ve given permission to see it, and will be displayed to them without your name, address and other identifying data. If you need more time, you can always save your answers and complete the questionnaire in another web session.

5. Registration Complete!

Once you’ve set your “private access” rights, verified your ID, and completed the basic and detailed health questionnaires, registration is complete, and your information is searchable by those researchers who have your permission to view it. At this point, you will also have full use of the PrivateAccess™ website. You will have the option to:

• Add another family member
• Edit your Privacy Preferences to give “private access” rights to additional researchers or to modify previously established rights.
• Update Contact and Health Information (It’s important to keep these current, so that researchers have a greater chance to find you for research studies.)
• Check back frequently. PrivateAccess™ is a new service that will soon feature many great options, such as creating privacy preferences and giving “private access” rights to your healthcare providers and others.