The more good data he can get, the better the chance of a good outcome. So come on all you PWP get along there, fill in your surveys and repeat after me: "aaahhh".
Does anyone know anything about these people? I've had a look at the website and maybe i wasn't looking in the right place, but I couldn't find anything about their affiliation. i couldn't see a research summary or patient information leaflet, or informed consent details. The T&Cs look more like those of a train company, and it's not clear to me from their privacy conditions that they aren't reserving the right to pass on your email address - and a whole bunch of other personal details.
I know Max Little (who is leading this research) - he is based at Aston University in the UK.
The patients like me website is US based. Its run by a commercial company Their privacy policy is balanced by their Openness Policy. they state very clearly that they will protect details such as your name and email address, but will share other details - such as your health data. I have therefore put in the minimum information on my profile. I would suggest its not very different from this forum - which protects our name and email (I trust!) but clearly any information we give about our condition is in the public domain. And the forum only works because we choose to share this information.
So, do I want my name, email, address broadcast to the world - no. And I have to trust Parkinson's UK to keep that data secret. Equally I have to trust Patients Like Me not to share this data. (Being based in the US, clearly the most litigious country in the world, there are undoubtedly hordes of US lawyers waiting to sue them if they do let private data out!.)
Do I care if you know that I am male, 63 years old, have Parkinson's, take Sinemet and Mirapexin CR which help considerably with my motor problems but that I suffer from insomnia, constipation, weak bladder and loss of concentration (maybe from the lack of sleep) - not really. And, if I share this information on this forum, maybe someone will help me find some solutions to my issues.
So I would encourage you to look again at the Patients Like Me site, which I think is very clear and open about their policies. Put in the minimum data on your profile and help Max in his research because it may in the future help PWps like us.
Just wanted to make some quick comments. To clarify, all the required information about the project that participants would need, such as the participant information sheet, consent procedures etc. are contained on the PatientsLikeMe website once you have signed up using the link in Andrew's post above. So, as it stands, you do need to sign up first to get this information. I don't think this is ideal though, so I have been in touch with the trial team at PatientsLikeMe and they will soon change this to make all this information available on the project page before sign up. I hope this will be helpful.
I should say that Andrew is right to point out that while PatientsLikeMe is a commercial company, they are founded on the principle that patients should be free to openly access and use their health data as they feel fit. One of the co-founders, Jamie Heywood, lost his brother to ALS and has been fighting to try to overcome the barriers to sharing medical data in an effort to speed up searching for cures. They have produced some remarkable, high quality successes with this approach as you can see if you go to their research pages. I'm very happy to be collaborating with them, and I genuinely believe that they are a unique organisation who really are on the side of patients.
The other organisation involved in this study is Sage Bionetworks. They are a non-profit with the aim of speeding up research by collating and sharing medical data, making it available to a wide and diverse set of researchers. They run highly innovative competitions to try to make rapid discoveries in disease progression and response to treatments, for example.
So, we are hoping that by combining our efforts in data collection, sharing and analysis, we can speed up research into treatments and cures for Parkinson’s. Of course, we need participation from the PD community to make this possible at all, and hope you can spare a little time to contribute.
Hope this helps!
Max
Thanks for your reassurances. I'm sure Patients Like Me will feel more secure when they put the information documents in front of the registration-wall, so thanks for suggesting that Max.
Part of my work involves evaluation, and I'm inculcated in the ethics traditions of anonymisation of (human) subject data, so I tend to get the willies when I see stuff that appears to have the potential to break those ethics. On the other hand, I'm firmly in favour of "expert patient", "managing my own condition", "owning my own health data" etc - which probably does require a different balance between openness, privacy, and anonymisation.
The right-wing cry of "if you have nothing to hide you've nothing to fear" (adds hastily, not that either of you have said anything remotely like that) is wrong. I've plenty to hide, none of which is illegal but which I want to keep private - of which my PD status is just one example: unlike AndrewJohn, I do care whether people know I have PD, and telling them also my gender and my age and my occupation etc just might be too much information. So, I'm needing to convince myself that openness (wherever) can't lead to identification (of me).
BTW Max, how does your work tie up with the Haifa researchers' work of three years ago now: Formant Centralization Ratio (FCR): A proposal for a new acoustic measure of dysarthric speech (and, no, I have no idea what I’ve just written!) http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2821466/ which was supposed to be the definitive voice test for early diagnosis?
