Reputation is All

Yesterday was the worst day in my professional life. What happened? Did I lose a client? Have a difficult project? Have an upset employee? No, yesterday I was accused of being unethical! That really stings, because of everything that I do, that I try to teach my kids, and that I learned from my parents, the most important is to do the right thing. And I try to live by those ethics.

Someone sent a contact of mine an email that pointed to our Rare Patient Voice privacy policy and said it was “invasive and unethical.” I don’t know who the person was, they did not try to contact me. But it was all based on a misunderstanding. We take our members’ privacy very seriously. We never have, and never will, share anyone’s contact information. Our privacy policy, taken from standard market research language, mentioned that we may need to share personal information with third parties. But we never do that, and never will do that, so we have changed our privacy policy language to reflect how secure we do keep identifying information.

Hard as it was to be accused, it was a good wake up call, a reminder of how important it is to protect the private information we are entrusted with. Now at the very beginning of our privacy policy ( we state:

Our Privacy Pledge
When you participate as a panel member, your privacy is assured.

  • We will not make any personal information of our panel members available to anyone without your knowledge (as described in this policy), except in the rare instances required by law. This includes your name, address, phone number, and email address.
  • We will never try to sell you anything – that is not our business. We will never sell your name to anyone else who might want to sell you anything.
  • Occasionally, we may contact you to validate responses. We will never misrepresent ourselves or what we are doing.
  •  Your individual responses to surveys will also be kept confidential and will never be linked to your personal identifying information.
  • Your decisions about participating in a study, responding to specific questions, or discontinuing participation will be respected without question.

We based this language on the privacy policy of, so thanks to them. It accurately captures what we do and all of patient market research should aspire to this.

I have often said, if we break the confidences of our clients or our panel members, we will be out of business. If you have any concerns about your privacy in our hands, please contact me to discuss it.

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.

{ 15 comments… add one }
  • Deb Boulger July 9, 2014, 7:36 am

    I was disconnected after I said I worked for an advertising co. I find this presumptuous as you did not ask in which capacity. In my case I looked after my bosses home who owned the company . It was a sign company. How does this disqualify me?

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  • Karen Dady Burdette July 11, 2015, 1:08 pm

    I am completely shocked you received a complaint! I have found your company to be highly ethical and very caring. I am grateful for the surveys. I know they are important to assist you and other companies in understanding what we go through on a daily basis. I’m sure it hurt, but know there are many who appreciate you and we often forget to say “thank you”! I am saying THANK YOU! You are doing a great job.
    Karen Dady

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