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UMotiff study

#1

This may be just me, but the information on the uMotif programme seems to be a little vague in places  and I was wondering if anybody could clarify a couple of things.
As far as I understand (which admittedly I really don't) uMotif is linked to SBRI Healthcare which:
'supports a programme of competitions inviting companies to come forward with their ideas and new technologies for known NHS challenges' (SBRI website). 
uMotif appear to be claiming that use of the  ' uMotif Platform' (whatever this is)  could save the NHS £20 million per annum; the savings, in terms of Parkinson's patients, seem to be expected to come about through 'empowering' PWP to 'manage their medication and improve their health behaviors'. I'm not sure I see quite where the savings are coming from, unless the suggestion is that using an app will be a substitute for face to face appointments with medical professionals?
My concerns about the future direction of the NHS aside, however, my major worry is that while I can find estimates of sales (seems likely to be profitable) I’m not sure I understand the privacy policy (http://umotif.com/privacyPolicy) which states, among other things, that:

We may use your data, or permit selected third parties to use your data, to provide you with information about goods and services that may be of interest to you. We or they may contact you about these by post or telephone.

And …  The information that we collect from you may be transferred to, and stored at, a destination outside the European Economic Area ("EEA"). It may also be processed by staff operating outside the EEA who work for us or for one of our suppliers or Partners. By submitting your personal data, you agree to this transfer, storing or processing.

  I don’t really understand what this actually means in practice,  but I worry about unwittingly handing over my confidential health data to private companies.

Sorry for the long post, just trying to get a fully informed understanding of this before deciding whether to sign up.
:-S

#2

Thank you, Jackson , for drawing this to our attention.

Whatever this is for it seems mainly to be about making a profit for the makers rather than improving life for the patient.......the passing on ( selling?) of your info for generation of sales of other products is ominous.

Not for us, I'm afraid.

GG

#3

Hi Jackson,

You can read our news article about this project here: https://www.parkinsons.org.uk/news/25-february-2016/take-part-research-100forparkinsons We are excited about this project and it's potential to help improve our understanding of Parkinson’s and shape future research. 

For more information about privacy and the way the data will be stored and used, we'd recommend contacting Umotif directly at [email protected].

Best wishes,

Joanne

(Digital team)

 

#4

Umotif says this...

"We may use your data, or permit selected third parties to use your data, to provide you with information about goods and services that may be of interest to you. We or they may contact you about these by post or telephone."

The PDUK article  says the data will be anonymous.

Both can't be correct.

Is it anonymous or isn't it?

Could you clarify  Joanne?

Thanks.

 

GG

 

 

 

 

#5

Hi GG,

The data collected in the research project 100 for Parkinson’s is anonymous.  There is a sign up process to download the app, and the information required by UMotif in this process what this disclaimer above relates to.

I hope this helps to clarify.

Best wishes,
Joanne 

#6

Hi,

Thank you both for replying, I am still a little confused, is it possible to have a copy out the  sign up form so that I can see what information is being asked for and, therefore, can presumably be passed on. Also, just to clarify, you're saying that the reference to passing  information on only applies to the sign up process because that's not clear from the company policy ( though I may be mis-reading).

Thank you a again,

J 

#7

If this is a study why is it necessary to pass on info to unconnected firms who want to market other products?

GG

#8

Hi both,

Here is a copy of the Participation Information Sheet: 100 for Parkinsons Participant Sheet (please note that clicking this link will start the download, Word document, 55KB)

This research trial is linked with Liverpool University and has been ethically approved.  Ethics approval is only given if the ethics board believe the research respects and protect the rights and dignity of the people taking part.  

If you have any more questions about this research, please do get in touch at [email protected].

Thanks,

Joanne 

#9

Hi,

Thank you for your reply.  I do understand that we all view data sharing differently but with the likelihood of a significant expansion in digital healthcare in the near future, having access to sufficient information ('being informed!') about the process and purpose of any data collection exercise in order to be able to make informed choices is, for me, an integral aspect of 'taking  control'. I wasn't intending to criticise the project, I was merely (and remain) curious about aspects of  data management as it relates to this type of collaborative exercise. I do, however, realise that I may well be just confusing myself so thank you also for your advice, I will follow up as suggested.

J

#10

I tried to get Parkinson's to adopt a really simple data collection programme that was totally in house, but this app is typical of their inability to look after our concerns and problems. I was diagnosed 3 years ago and in that time have had very little support, I believe this attempt to look proactive is not going to work, I couldn't find the app! With Parkinson's it needs to be simple, and I still work, but with a memory like a sive! 

#11

Data confidentiality is really important and it is also pretty complex. I signed up for this study three weeks ago and I have used the app every day since. I read the privacy policy carefully when I signed up and I reread it last night. To me it is obvious that Umotif have taken a great deal of care to explain what they will do with the data and what safeguards they will use. They have explained that it is impossible to offer a perfect guarantee of confidentiality.

In the end it is a question of trust. Personally I trust that Umotif are doing the right thing and I'm excited about the research potential of this project and others like it. When I was diagnosed over 10 years ago I was disappointed to discover that there were no projects trying to take accurate measurements of the progression of Parkinson's. I'm really pleased that this is starting now and I would like to see PwP support it.

This is just my opinion but I'm in.

EF

#12

I'm sorry EF but I have been around the block and the old addige of "what's in it for me" only makes me concerned it might be like that survey I signed up for until I realised it wasn't a purpose made survey for Parkson's

#13

Hi,

Having asked the question in the first place, I feel that I should post the answer now that I have one. I did as advised and contacted uMotif, who were extremely patient with my questions (thank you) and I think I understand it now. Data entered into an app usually comes under the privacy policy of the company promoting the app but these policies can be flexible. In this instance, the agreed process is that any data transfer (for various research purposes) will be effectively overseen by a data access committee chaired by the Cure Parkinson's Trust. They will only pass on anonymised data to other researchers who meet specific criteria. The explanation was longer (and clearer) with a diagram included. Maybe I should have asked the question privately in the first instance :- S though I figure that discussion is a healthy thing! I suppose my only other thought is why this info wasn't available on the website in the first place, I may be a lifelong conspiracy theorist but I think that it's always worth checking out privacy policies (well that's my defence anyway cool)

J 

#14

I have completed  25% of my UMotif 100 for Parkinson's research programme. So far I have found the App easy to use except that my  iPhone touch screen is rather too small for the 'flower floret' symptom tracker. Any slight tremor causes havoc! I do not worry about the use of my data and am amazed that it has taken so long for such an App to be produced for PD. I also was involved as a lay contributor to the GyroGlove development and look forward to seeing a useable version of this idea. Any opportunity to contribute to research is worthwhile in my view! Onwards and upwards.

#15

Hi all,

We've fed the points raised here back to UMotif - it's really useful to hear everyone's comments and how people are getting on with the project.

They have also now written a blog about how data will be used, if anyone wants to find out more: http://100forparkinsons.com/blog/what-happens-to

Best wishes,

Joanne 

#16


Hi eleganbt fowl,


Dx. 7 years ago, I too was amazed to find that there was apparently no long-term studies of the exact progression of PD.  Shortly after that  I joined the PD UK/Oxford long-term study on just this and have signed up for this one as well.  It seems astonishing that it has taken so long to harness the power of computers to analyse vast quantities of data in order to show up associations which can be further investigated

 

#17

Hi Hartfelt,

If you scroll right down the menu to the very end where is says Setting and then choose accessibilityyou can enlarge the segments to appear one at a time. 

I have found the site extremely helpful and I suppose they are just discovering what difficulties the user might have.  They sent me a link to a site with info. but my computer has been away an d come back missing a lot of my saved info. for the moment or I would pass this on as well.  I had only just acquired a smart phone with much trepidation given the tremors so some of my questionbs were probably quite daft but they arfe a very friendly, helpful team, even to the point of following up their request for further information as to what phone I was using when I did not reply.