We at Rare Patient Voice are conducting more and more studies that involve Institutional Review Boards – IRBs. These are often Health Economics Outcomes Research -HEOR. Sorry for all the acronyms!
We are happy to provide patient sample for these important studies. And we’ve learned over the years some tips and tricks to make these projects run as smoothly as possible.
What we hear from clients is that once a research protocol is approved by an IRB, you really don’t want to make changes. That requires going back to the IRB, which can be like requiring an act of Congress to get changes approved. So, you want to get the protocol set up in the best and most efficient method from the start!
So, we encourage you, when you have an IRB study that may require our patients, please contact us before you submit the protocol to the IRB. We are happy to go through our process and work with you to determine what will work best to meet your client’s needs. If we do that before the IRB takes a look, that saves a lot of time later. And it prevents the “sorry, we’d rather do it the wrong way than go back to the IRB” approach!
One issue that comes up is what the emailed invitation to our panelists looks like. We are happy to share our preferred template with you to work with, so the IRB sees it from the beginning. When this doesn’t happen, the IRB may have approved an approach that doesn’t mention some of the key items we need to include in our invitation. They may need a banner that we aren’t able to include. We need to include our own signature line, so our panelists aren’t confused – they expect the invitations to come from Rare Patient Voice. As well as our study opt out link, and our privacy policy.
So please, try to plan for this in advance. We are happy to provide our template as early in the process as possible! We want you and your clients to be happy, and to follow the IRB-approved protocol.
