Below are some of the frequently asked questions about PrivateAccess™. If you have other questions, please visit the
Contact Us page.
What is the Toolbox?
The Toolbox makes it easy for you to review, add, remove or change the information about you (or your family members) at PrivateAccess™.
- “My Account” allows you to update your account profile - including your name, address, password and security questions - with additional information, or to change or delete information that’s no longer applicable.
- “My Health Profile” allows you to edit the health and lifestyle information about the people associated with the account, like yourself or your children.
- “Privacy Settings” is where you control your privacy preferences and grant researchers “private access” rights, which determine how they can search for and contact you. You may change your current settings at any time.
- “Privacy Alerts” is how we inform you when someone wants to make contact with you. If, for example, a medical researcher wants to discuss your eligibility for participation in a clinical research study, that request appears in this section of the Toolbox.
- “Audit Log” tracks the entire contact history for your account. Go here to review who has expressed interest in contacting you and when. Whether you have allowed or prohibited these contacts will also appear in the audit log, giving you confidence that your privacy preference and the “private access” rights that you’ve established have been honored.
What is the relationship between Private Access, Inc. (the company) and PrivateAccess™ (the website)?
Private Access, Inc. is a new California-based company founded on the belief that patients can both protect their privacy – at whatever level they wish - and gain faster access to research and improved care. Building on their patented privacy platform, the company’s first suite of online tools and services puts individuals in control of the detailed and very personal health information that’s vital to the medical researchers conducting clinical trials and studies that may lead to breakthroughs and cures. Known as “PrivateAccess™”, this platform gathers and stores the unique privacy preferences that each of us has relative to who may see our personal health information, and how they may use it.
What other tools does Private Access, Inc. offer?
Building on the PrivateAccess™ platform, which gathers and stores individuals’ privacy preferences, the company also offers: RecruitSource®, a search engine for medical researchers that helps them find subjects for their clinical trials and studies; subjects who have already expressed interest and given search permissions to those researchers, and TrialsFinder®, which helps patient advocacy groups search for, identify and post clinical trials and research studies most relevant to their causes and communities.
How will researchers find me?
We will make your health information searchable and viewable according to the “private access” rights that you establish for researchers at PrivateAccess™. For example, you might allow all researchers from the Mayo Clinic to search for you. In order to do so, those researchers must be enrolled and their identities authenticated in RecruitSource® - that is, we have to feel confident that they are who they say they are. A Mayo Clinic researcher will be able to find you if he/she is searching for study criteria that match your personal health information.
How will researchers contact me?
When you set your privacy preferences, you may grant “private access” rights to certain researchers, giving them permission to contact you and determining the circumstances under which that contact can be made. For example, if you have allowed search by Mayo Clinic researchers, and there is a Mayo Clinic researcher who identifies you as a strong candidate for a clinical study, he/she will likely want to contact you. One of the following might happen, based on your current privacy preferences:
- If your privacy preferences allow contact by this researcher, he/she will get access to your name and contact details and may immediately reach out to you to discuss the study. If you have chosen to wait to decide whether to allow contact, the researcher might send you a message (at this point they don’t know your name or any other personally-identifiable information; the message comes through PrivateAccess™) asking to contact you. This message will appear in the “Privacy Alerts” section of your Toolbox. When you read the message, you can decide whether to allow that researcher to contact you. If you allow contact, you’ll be granting that researcher “private access” rights and the system will automatically send your contact details to the researcher. If your privacy preferences prohibit contact by that researcher, he/she will be informed of such (by PrivateAccess™) and will not be able to view or use your name, address, phone numbers or any other personally-identifiable information.
How much does it cost to use PrivateAccess™?
PrivateAccess™ is a free service to individual users and their families. If premium services are offered in the future, you will be under no obligation to purchase those services, and we will continue to protect your information as we do now.
Why haven’t I been contacted yet?
Clinical research studies can be very complicated, and they can take a long time - often years! - to complete. It may take some time to hear back from a researcher. Also, researchers are looking for participants with very specific characteristics or circumstances. If you want to increase your chances of being contacted for participation in a clinical research study, you may update your privacy preferences to give “private access” rights to more researchers to search your health information, and to contact you if you are a candidate.
Can I use PrivateAccess™ to transfer my medical records?
For now, the PrivateAccess™ website and privacy platform permits an unprecedented level of communication with medical researchers - about specific studies or general research. Private Access, Inc., in collaboration with other companies, government agencies and non-profit organizations, is working on soon to be available tools that leverage the PrivateAccess™ platform to manage requests for your medical information from providers, insurers, employers and others.
I have a question that’s not listed here.
For other questions and comments, please visit the Contact Us page, and we will respond as soon as we can.