Just the Fax, Doc

What is it about faxes that physicians’ offices love so much? Is there a worse way to protect patient privacy than sending test results to a machine where the pages pile up for hours and everyone in the office will see it before the patient? But they do love faxes, and we end up using them quite a bit in outcomes research.

We’ve been recruiting quite a few rare patients from our panels for outcomes research. We’ve learned a few things:

  1. Institutional Review Boards (IRBs) will accept patients from our panels. We’ve described our recruiting methods in detail for clients to submit to IRBs, and we haven’t had them rejected. I think IRBs particularly like that we meet many of our patients at conferences, walks, fund-raisers, etc., assuring their authenticity.
  2. We can obtain physician confirmation of patient diagnoses. We ask the patient to obtain it from their physician, or we get the patient’s written permission to obtain it directly from the physician. Either way, we get a fax back with the signed and stamped confirmation of diagnosis, just what the IRB ordered.
  3. Outcomes studies tend to have more consent forms than standard market research studies. Not to worry. If possible we obtain permission to collect this electronically. We prefer to include these consents in our online screeners. That way, it is part of the qualification criteria, so we get it for 100% of the patients who participate right from the start. There is no need to delay field, and we don’t lose patients who qualified but don’t get around to returning their forms.

We’d like to learn more about your rare patient outcomes research needs. See our booth at ISPOR (International Society for Pharmacoeconomics and Outcomes Research) May 17-20, at the Marriott in Philadelphia.

About the author: Wes Michael, President and Founder of Rare Patient Voice, has been involved in rare and orphan diseases since 1998, interviewing and surveying patients, caregivers, physicians, nurses and advocacy leaders. Wes has more than 30 years experience in marketing research, and more than 15 years in healthcare marketing research.

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