Parkinson's Movement
12,395 members11,016 posts


As you may be aware, we at PM have asked Blue Latitude to look at areas where we might be able to improve PM and the Health Unlocked site. One area that some of you raised is the question of data. Specifically some of you were concerned about the results of the polls and how that information is used. So let me help clear up that one to start with.

Firstly, your personal information is yours and yours alone. No individually identifiable information is ever used by us.

Secondly, the information we obtain from the polls is used principally for our own research on patient attitudes, health, treatments and aspirations. That information is used to explain Parkinson's to people outside the field (raise awareness), to back up scientific hypotheses (with data or presented at scientific congresses) and to prepare briefing documents and press releases, as appropriate (to ensure that patient opinion is heard in the right circles).

We can't do that without you.

But let's also be absolutely clear here: We do not sell data to pharmaceutical companies or any other groups. Your answers to our polls are used for our research not for corporate profit. And we do not ask information of you that we, the founders of PM (also patients lest we forget), would not provide ourselves.

In the end of course, the choice is yours. You have the ultimate opt-out by simply not answering any poll that you wish.

We anticipate sharing some of the early poll results over the course of the next month. Some of the data is also being presented at THE MDPD conference in Berlin next month. Once presented, we will post that on the PM website.

I hope that helps.

1 Reply

Sounds good to me. If it helps PWP I am all up for it......thanks...


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