1. Expert Q&A: Protecting a person with dementia from financial abuse - Weds 26 June, 3:30-4:30 pm

    Financial abuse can have serious consequences for a person with dementia. Find out how to protect a person with dementia from financial abuse.

    Sam, our Knowledge Officer (Legal and Welfare Rights) is our expert on this topic. She will be here to answer your questions on Wednesday 26 June between 3:30 - 4:30 pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

UKBiobank - a chance to make a difference?

Discussion in 'Dementia-related news and campaigns' started by Tender Face, Mar 22, 2008.

  1. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Well I received my invitation today .......

    "UK Biobank is a major UK medical research initiative, and a registered charity in its own right, with the aim of improving the prevention, diagnosis and treatment of a wide range of serious and life-threatening illnesses – including cancer, heart diseases, diabetes, arthritis and forms of dementia."

    http://www.ukbiobank.ac.uk/

    No it won't help mum (or anyone I have already lost to cancer or other diseases) or even my son - but maybe his children? ....... how could I NOT do it?

    Karen, x
     
  2. CraigC

    CraigC Registered User

    Mar 21, 2003
    6,630
    London
  3. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Haha! Craig!!!! :) Well as the government have already let my identity, bank account details, NI number etc etc 'slip' into the outside world (thanks to the Child Benefit fiasco) .... I figure the risk of my health details ever being known might actually deter criminals!!!!!! :D

    I do confess a small hesitation on the 'security' front ..... :(

    Karen, x
     
  4. CraigC

    CraigC Registered User

    Mar 21, 2003
    6,630
    London
    Interesting you should say that Karen. Being an bit of an IT chap I have read a few articles about BioBank along with the 'single patient record' plans that the NHS has been working on for many years now. Basically all your details will be held on a database in one central location and can be accessed anywhere in the country. So if you have an accident far from your home the hospital will have instant access to all your medical details including allergies/history/blood group etc etc. It is a brilliant plan.

    However, what concerns a lot of people is if this information falls into the wrong hands - for example insurance companies. It is very unlikely, but imagine how it could allow insurance companies to hedge their bets even better than they do. We all know how difficult it is to get insurance if you have any precondition.

    I think BioBank has got around this by giving you a unique number that will not be linked to your full name or NHS number. So in theory you would be anonymous. BUT please anyone who is worried, make sure you ask the right kind of questions about security. Personally, I would want a guarantee that my details could not fall into the wrong hands ever.

    Kind Regards
    Craig
     
  5. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london

    I thought so also when I heard it on the TV , then I read this .

     
  6. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Hmmmm .... are we so afraid of our own 'identify theft' that we have to back away??????

    I may be having a 'naive' moment ....... but I can't see what earthly good anyone obtaining my medical details would have - assuming all assurances of confidentiality were negated - (OK - one or two insurance situations may be at premium odds were I to need them if someone were to discover and divulge preconditions I am blissfully unaware of for now?) whereas knowing someone might know my NI number and bank account details naturally has me on the defensive ........

    Are we to deny putting ourselves forward for medical research on these grounds? I can see little or no harm from this for myself or my family - and only good ......???

    Yours, naively, Karen, x
     
  7. chip

    chip Registered User

    Jul 19, 2005
    400
    Scotland
    They sent my husband an invite to go to it!! I had to phone them up and tell them. They get your name etc from being registered with a GP practice. But they don't have access to medical records.
     
  8. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    I know chip, sorry, .... there is an apology in the covering letter in case the 'invite' is inappropriate ..... that I believe is part of the 'random' survey ..... people are 'only' being targetted because of age range and nothing else (although I do question would a lower age limit be more benefical to research? - but I'm no medic nor researcher .......)

    My husband's first reaction earlier today was 'no way' ...... had a gutful of tests for his own cancer and a family history full of heartache through supposedly genetic factors (cancer and CF) .... he is now more determined than me to take part .......

    Love, Karen, x
     
  9. CraigC

    CraigC Registered User

    Mar 21, 2003
    6,630
    London
    Hi Karen,

    It is unlikely, but as one example, lets just say someone tried to get a life insurance policy and the insurance company had access to the database (not legally of course). Lets just say that the records showed that this individual or a member of the individuals family had a history of a certain condition, like high blood pressure, cancer or dementia. Insurance companies are like bookies, they minimise risk. If they had access to this information they would be unlikely to take the risk. You could argue that you have to declare many of these conditions to get insurance anyway, but the national database will hold a lot more information than you'd like others to have access to.

    By no means am I saying this should stop anyone getting involved in valuable research, I'm just saying how important security is and as you mentioned it is concerning. The more people that highlight these issues when replying to these invites, the more likely we are to see security taken seriously.

    The above is just one example of how dangerous medical records can be if they get in the wrong hands. The irony is that I cannot even get access to my dads medical records as he did not give me permission to do so before he became unwell. I have registed EPA and his interest at heart, but his medical records are protected. I can actually see the logic, but I just want to ensure that his records are protected from everyone, not just me.

    Kind Regards and hope that is more help than a chocolate tea pot.
    Craig
     
  10. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,419
    I think I lot of the fears that you hear about regarding medical records and insurance companies are generated from countries like the USA where you have to buy medical insurance. I would do my level best to stay out of any data base for that reason alone. I think there are fewer concerns when you have free access to medical care.
     
  11. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    I love chocolate tea-pots!

    No - it's intriguing Craig, thank you - and so glad to be able to discuss this before I give consent to anything - the contract goes beyond death ...... how strange giving consent to on-going research on my 'samples' and any medical records when my own family may not be able to access any details long after I finally 'meet my Maker' ......???

    I maybe come at this from a different perspective than others - as an adopted person I have scant medical information about my genetic background (and what I have is bad!!!!!) ...... and with my husband already precluded from life assurance because of his cancer ...... we seem to have nothing to lose ........ but the research can't surely be made up from people who have little or nothing to lose?

    Karen, x
     
  12. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #12 Margarita, Mar 22, 2008
    Last edited: Mar 22, 2008

    It does not take a lot to confuse me , but I thought the link you left Wendy has nothing to do with the NHS data base or has it ?

    As I would put myself forward to do it , if they could guarantee that my details would not fall into the wrong hands .
     
  13. Grommit

    Grommit Registered User

    Apr 26, 2006
    2,127
    Doncaster
    The whole business of records and accessibility is now beyond stopping and creates dilemmas.

    With regard to insurance many of my neighbours have refused to comlete a form, sent out by the Environment agency, which registers the household for notification of floods.

    The reason they have refused is because they believe that, if they are placed on a flood alert register, the insurance companies will have access to the information and raise the premiums or even refuse to insure at all.

    So, at the risk of drowning, the forms are not completed.

    It would seem that we are relinquishing control over our lives, through no fault of our own and whatever we do will be overlooked by some agancy or another.

    Might as well roll over and let it happen, as it surely will, with the introduction of Identity cards which will contain much more information than is strictly necessary for finding out who you are.

    I have not had an invite yet but would certainly join if I did.
     
  14. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #14 Margarita, Mar 22, 2008
    Last edited: Mar 22, 2008
    We had Identity cards in Gibraltar for as far as I can remember . I presume the only different is with the one that are coming out soon in UK is that they have chip in it with all our information on it , like the new passport have now ?


    every one has an ID card & a passport in Gibraltar & spain & your can get on an airplane with the ID card alone ., even thought they no chip on the ID card .
     
  15. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Who's Wendy? :eek: It's me - Karen!!!!!! :) - TF (or more accurately TF's daughter!!!) ... nothing to do with the NHS database Margarita - that's a whole other aside - we are talking about the security of enrolling in medical research and the security and ethics behind voluntarily being added to a database - or more importantly into a research programme ... balancing any potential current personal risk against potential future benefit for others .........

    It's a 'no contest' as far as I'm concerned,

    Love, Karen, x
     
  16. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #16 Margarita, Mar 22, 2008
    Last edited: Mar 23, 2008
    Oh sorry Karen its just at the back of my mind . I keep thinking about my daughter who as asthma .
     
  17. CHESS

    CHESS Registered User

    May 14, 2006
    136
    LANCS.
    I, too, have had an invite and have arranged an appointment. If I can help in any way, I am more than happy to.
     
  18. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    May I ask why this thread has been moved to the Tea Room??

    :confused:
    Karen
     
  19. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    OK - if someone feels this does not belong in the 'main forum' - could the thread at least be moved to somewhere in the public domain? (Raising awareness- perhaps?) I have admitted I am not going into this with total confidence and would like some support ......:(

    To know there might be a few million others out there invited, and some like me, prepared to undertake this commitment but a tad nervous about it - and the big word in the invite that struck a nerve was 'dementia' .........

    I'm feeling quite unnerved just now ......

    Karen :(
     
  20. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,419
    #20 jenniferpa, Mar 22, 2008
    Last edited: Mar 22, 2008
    It my fault Karen - the policy is that if something doesn't directly relate to caring it should not be in the main support forum. However, you're are correct in suggesting raising awareness as the most appropriate place for it, so mea culpa, this thread is moving again. :)
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.