What Information is Collected?
In order to be effective and reach its goals, PHAR plans to collect a range of information about you and your PH. Of course, in order to understand your PH, we will need data such as:
- Your diagnosis details (For example: When were you diagnosed? What tests were used in making your diagnosis? What were the results of your first right heart catheterization?)
- Your clinical status (For example: How much trouble do you have doing activity? Have you been in the hospital or in the emergency room? What are your current medications?)
- Your follow-up information (For example: Has there been a change in the status/stage of your disease? A change in treatment?)
PHAR also needs to collect some personal identifying information that will help us identify you in the registry and keep track of you if you move to a different PHCC or change your name. We will also send newsletters to your residence, if you would like, to provide updates on PHAR. We understand how sensitive this information is; read on to learn what safeguards PHAR has established to protect your personal information. This identifiable information will include your:
- Birth name and current name
- Date of birth
- Social Security Number (optional)
- Birth city, state and country
- Current street address, city, state and ZIP code
- Phone number
PHAR will also collect other personal information which might help researchers understand why, for example, some treatments work better for some people than others. These are details that are not specifically about your PH, but nonetheless may provide valuable information that will improve our understanding of PH. For example:
- Other (For example: Are you married? Are you working? Do you have health insurance?)
Where would my information be stored?
The data would be stored on a server at the Collaborative Health Studies Coordinating Center (CHSCC) at the University of Washington in Seattle, Wash. CHSCC has more than 20 years of experience in running medical studies and clinical trials. They have collected research data for many studies. CHSCC would not release your personal (identifiable) information to anyone else, and it will be stored on a computer that is neither connected to the Internet nor a computer network.
How would you protect my personal information? What if I changed my mind?
To protect your identify and information, data would be collected at your PHCC on a computer that is used only for PHAR. The data would be secretly coded (“encrypted”) before it is sent to the CHSCC. We use similar technology to transfer money in our bank accounts and pay bills or buy items online. Once it arrives, the coded data is converted back to the original information and stored on a computer designated just for PHAR.
If you sign the consent form giving permission to collect and store your information, you can change your mind at any time. The PHCC would just have you sign a form notifying PHA to remove your data from the registry.
Who would be able to see the data?
The only people able to see all the data in the registry are those directly affiliated with the management of the project: the registry coordinators at the CHSCC.
The study coordinator at your PHCC will be able to access your information, as well as the information from any other patients who join the registry at your PHCC only. The information may be used for your care in clinic or during a research study. The information may also be used to review the care provided to PH patients at your PHCC.
After that, no one else will have access to all the data. Other investigators would only have access to limited datasets that remove ALL of your personally identifiable information. Under no circumstances would any identifying data be released.
This “de-identified” data — with personally identifiable information removed — will not be shared with just anyone, either. Before PHA releases any data, a researcher has to submit a plan about what he or she is investigating and what data elements are needed. The proposal would go through a review process at PHA to determine if it is reasonable before any data are released. If approved, only data elements related to the researcher’s study would be released.