Is CoPPiR associated with the Kaiser Permanente Research Bank?
Great question. No, Colorado Patient Partners in Research (CoPPiR) is not associated with the Kaiser Permanente Research Bank. These are two very different efforts.

If I join CoPPiR will my insurance status be affected?
Becoming a member of the CoPPiR network has no impact on your insurance status, coverage types, co-pays, or any other aspect of your health insurance.

The health history questionnaire asks about a lot of personal information – is it going to be kept confidential?
The information you provide through the health history questionnaire is stored in a secure database behind institutional data firewalls. The only people who will see your information are CoPPiR team members: our programmer and network administrators.  Every member of our team has undergone extensive data protection, privacy, and confidentiality training.

Will CoPPiR access my electronic medical record?
Absolutely not! The only health information the CoPPiR team will see is anything you choose to share on the health history questionnaire. And the questionnaire is completely voluntary: you don’t have to answer any questions (except to provide your name and email address).  We connect you to research teams based on the match between your health history and interests however, so by providing information about you we can better connect you to research teams who are looking for a patient partner that has your characteristics (like experience with a certain disease or condition).

Who will see my contact information?
Your email address will be used by the CoPPiR team to send you occasional updates on patient engagement in research opportunities, virtual trainings, and news about the network and research studies that have patient partners on their teams.  We will also contact you by email to let you know when there’s a research study looking for a patient partner with your characteristics. We will never share your email address with a research team, or with any outside organization or business for any purpose.

How do I join a particular research team?
When a research team requests to be connected with potential patient partners with particular characteristics that are relevant to their research topic, we will look in the CoPPiR network for members with those characteristics.  If you provided information that matches the researcher’s request, we will send you an email letting you know that there’s a study we think you might be interested in, and ask you to contact us to learn more about it.  We’ll then tell you the study topic, the role(s) available for patient partners, how much time it would take, and for how long. If you’re interested to learn more about the opportunity we will give you the contact information for the research team.

Will I be paid for my work on a research team?
Yes, you will be compensated for the work you do for any research team; the team will negotiate the amount with you after you contact them to learn more about the study, and have a chance to decide whether the “fit” for you and the team is right.

What if I change my mind?
If you join a research study as a team member we ask that you commit to work on it for the duration of the study (which could be as long as 5 years). However, we understand that life events can dramatically affect our abilities to maintain some commitments, and recognize that there are times when partners will need to drop off studies. Please discuss your changing commitment with your team as far in advance as possible so everyone is prepared for your departure.

Do I have to join a research team?
When we email you to let you know there’s a team you might be interested in, you do not have to respond!  We will try once more to tell you about them, so if you want to avoid that second email you can respond to the first one and we won’t follow up with you on that opportunity again. And if you contact us for more information about an opportunity and THEN decide you’re not interested, that’s ok too.

How do I leave the CoPPiR network?
Easy: just email us at info@coppir.org and we will remove you and all of your information from the network, and you won’t be contacted again.

How much time does it take to be a patient partner on a research team?
The time commitment varies from team to team and depends on what role on the team the patient partner plays. In general, partners who are consultants/advisors can expect 1-3 hours per month for team calls, and partners who are more heavily involved as co-investigators on studies can expect 1-2 hours per week. Some teams also budget travel for partners to attend relevant scientific meetings and present on the study’s results – all voluntary, of course, but those opportunities require more concentrated time.