Biobank for Tinnitus — Debate

Discussion in 'Awareness & Fundraising' started by Frédéric, Feb 14, 2020.

    1. Frédéric

      Frédéric Member Podcast Patron Benefactor Advocate

      Location:
      Marseille, France
      Tinnitus Since:
      11/19/2012
      Cause of Tinnitus:
      acoustic trauma
      I would like to launch a debate on the topic of Biobank. I see that BTA and some members on here argue for the creation of a Biobank.

      So far, thanks to Tinnitus Hub and other organizations, we have anonymously completed a few surveys which contain at the maximum the following data: age, gender, date of the onset of tinnitus, cause of tinnitus, tinnitus annoyance, treatments done so far, success of these treatments...

      What about pouring further details? Which ones?
      Tonal audiograms, Speech (in quiet room) recognition, Speech in noise recognition.

      What else (and more confidential)?
      Imaging data related to tinnitus (MRI, fMRI), DPOAE, ABR, VNG...

      More and more confidential?
      Every kind of exams not directly related to tinnitus, but which could be relevant like blood tests (including metabolic biomarkers).

      And the ultimate one: genetic data?

      I would like to give 2 testimonials:

      1) I did a battery of tests at IMERTA, a tinnitus clinic in Marseille, shortly after the onset of my tinnitus, 7 years ago. Now, I am going to follow a clinical trial in TIN-ACT Marseille. Despite the fact that IMERTA and TIN-ACT are partners, IMERTA did not warn me about this clinical trial, I learned it by chance. Moreover, I will have to bring the tests reports by myself to TIN-ACT.
      Question: does IMERTA share my test data to other researchers? Obviously not.

      2) A shared medical record system was implemented in France last summer. So I created my account. The process of accessing this folder is very secure with final and temporary passwords. Normally every practitioner should feed my medical digital folder. However, since last summer, I did a battery of tests for other issues, and no doctor has informed this folder, it is still a large empty shell.

      So 3 questions:

      First question: do the researchers community (TRI, ESIT, TINNET, TIN-ACT) call for that? What are their opinions? Which data exactly? So is there a real demand?

      Second question: are you ready to give all this data? For which conditions? Location of the datacenter which collects the data? Who will have access to it? Will it be secured? Will there be a mine of data big enough?

      Third question: In that case, is it legally possible? (I mean in France we must comply with the requirements of https://www.cnil.fr/en/home). Who should we lobby for? Have Tinnitus Hub or other organizations already done anything in this direction?

      What are your thoughts?
       
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    2. UKBloke

      UKBloke Member Podcast Patron Benefactor

      Tinnitus Since:
      1991
      Cause of Tinnitus:
      Loud Music / family history
      Hi Frederic,

      Not really sure about question 1 but have a couple of viewpoints on 2 & 3:
      Yes, I would happily give whatever test data I could for all conditions. In the UK I think for the purposes of data collection, GDPR would require any data center (storage) to be located within Europe (this I think will be the case even post Brexit). In terms of who will have to access to it, and will it be secured, I feel these questions kind of come under the umbrella of question 3.
      In principle yes, I believe anything's possible but I reckon it would not be without difficulty juristdictively to implement. GDPR has been a bit trying at times in the UK. It can create a lot of extra work for organisations, and I've seen with my own eyes very innocent data "breaches" that ultimately cost the organisation time and money to report. Obviously the main thing with GDPR is all about tying the data to an individual with such things as name, NI Number, DOB etc etc. On that basis I do wonder whether the way forward with Biobanking might be to try and anonymize the data, or at least create a situation where it would require independent parties to tie the data to an individual.

      My main fear with the Biobank, if we essentially create an entire medical data avatar of ourselves somewhere in "the cloud" is, the potential for dodgy persons/organisations to abuse that data. That said, I'm 53 years old and come from the pre-Internet era when privacy was the norm, so I think people my age are more prone to carry this kind of concern forward with us.
       
      • Like Like x 1
    3. AUTHOR
      AUTHOR
      Frédéric

      Frédéric Member Podcast Patron Benefactor Advocate

      Location:
      Marseille, France
      Tinnitus Since:
      11/19/2012
      Cause of Tinnitus:
      acoustic trauma
      @UKBloke : hi, thanks for sharing your thoughts.

      Indeed, same fear about dodgy persons to abuse that data. Since I suspect insurance companies to track health testimonials on social networks, it will be easy to them to to find in this biobank, by crossing the date of birth, gender and location, the identity of the file of a tinnitus sufferer said to be anonymous.

      I would raise a fourth question (and I will try to give a trend by wednesday with my appointment with TIN ACT) : do the different tinnitus clinics share their data? If not, shall they accept to do it? Who shall be able to convince them to do it?
       
    4. MRItechssuck
      Disappointed

      MRItechssuck Member

      Location:
      USA
      Tinnitus Since:
      Severe 10/17/2019
      Cause of Tinnitus:
      Loud noise, MRI
      Someone will eventually abuse the data, or there will be a data breach IMO.
       
      • Agree Agree x 1
    5. UKBloke

      UKBloke Member Podcast Patron Benefactor

      Tinnitus Since:
      1991
      Cause of Tinnitus:
      Loud Music / family history
      Again, in principle, yes - but I think the case for anonymizing the data still needs to be explored.

      Perhaps there's a bigger hurdle that would need to be overcome, and that's the clinics that operate in the private sector. Take the Tinnitus Clinic in London for example. It operates out of Harley St., and Harley St. isn't particularly well known for its philanthropic endeavours. I think that at the boardroom level, discussions about sharing data for the better good would inevitably lead to whether doing so might blunt the commercial edge. It might not make a difference, but then again...
       
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