Questions regarding donor privacy and confidentiality

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Dear NHS Blood and Transplant,

1) With reference to the document entitled "Your Information - A guide for donors about your rights and our responsibilities under the Data Protection Act 1998", available at:

http://www.blood.co.uk/pdf/publications/...

and the text on the fourth page of that document: "It is important to us to keep your address details up to date, so that we are able to stay in touch. To help us do this we may compare the details we hold with central NHS records,
or those of other organizations that offer approved services for checking and updating
addresses.", please could you tell me:

a) when it says you 'may' compare records, what would prompt you to actually compare your records with those of the 'central NHS records';
b) how do you decide whether it is your records, or the 'central NHS records', that are correct or more up to date;
c) if your records differ to the 'central NHS records', what action do you take;
d) if you are supplied with demographic information from a donor that does not already exist (or exists in a different form e.g. different spelling) in the 'central NHS records', would you transfer that information to the 'central NHS records' in order for their information to be updated;
e) if you do update the 'central NHS records' would you seek out consent prior to transferring this information;
f) if a donor deliberately removed (or never provided) a piece if contact information (for example a phone number) from their NHSBT records, would NHSBT obtain this information from 'central NHS records' if they decided they required it;
g) if a donor had their Personal Demographic Service flag set to 'sensitive', how would this affect their NHSBT held records;
h) if a donor had their PDS flag set to 'sensitive', would this have any effect on their ability to donate blood;
i) why do you use the term 'central NHS records', rather than something more accurate such as 'centrally held nationally accessible NHS records' and a link to information about these records;
j) which other organisations that offer 'approved services for checking and updating addresses' do or would you use;
k) and under what circumstances would you use these other organisations?

2) Blood Donor Online Service:

a) who runs the 'Government Gateway' through which Blood Donor Online is accessed (i.e. which department of the Government is responsible for it, and what organisation is contracted run it);
b) as the same username and password is used to access all Government bodies a blood donor may use on the 'Government Gateway', what safeguards are there in place to prevent state organisations using the Government Gateway from accessing information from other such state organisations that a particular person might be using;
c) if a donor alters demographic information on Blood Donor Online, does this then alter their main NHSBT held records of that donor;
d) if a donor alters demographic information on Blood Donor Online, would that then filter through to the PDS database;
e) if a donor has set their PDS flag to sensitive, would this have any effect on them being able to use Blood Donor Online;
f) do you have any plans to move away from a Government controlled portal for donors to access their records, such as your own stand alone system, or perhaps part of the NHS Healthspace project;
g) how many regular blood donors do you currently have, and how many of these regular blood donors use Blood Donor Online (please could you also state how you have defined a 'regular blood donor' in order to answer this question)?

3) Use of donated blood for research and development work:

a) is donated blood that is used for development or research anonymised, pseudonymised or a mixture of both;
b) if a blood donor were to make a Subject Access Request under the Data Protection Act, would they be able to obtain information regarding whether their blood has been used in any research or development, the nature of that research and development, and any results of any testing?

4) Part of the health screening prior to donating blood currently involves the question "Have you had the Smallpox Vaccine withing the last eight weeks?":

a) why do you ask this question when Smallpox was eradicated long ago;
b) why this question is asked verbally rather than included in the donor health check questionnaire;
c) are all donors asked this question, or only certain demographics (and if so, which ones?)?

5) with your Organ Donor Register offering people the opportunity to register to donate organs after their death and the consequence that relatives would know that this was the person's wish, do you offer a similar opportunity for someone to provide their dissent to donating organs in order that relatives could know that it was your wish that you didn't donate, and if not are there any plans to look into such a possibility?

Yours faithfully,

Mr Rawlins

NHS Blood and Transplant

Our ref: SC/190974

Dear Mr Rawlins

Acknowledgement

Thank you for making us aware of your comments.

We aim to respond within 20 working days.

In the meantime, if you have any urgent queries, please call our customer
services team on 020 8271 6343 and we will be happy to help.

Yours sincerely

Andrew Pearce

Head of Donor Advocacy

E-mail: [1][email address]

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NHS Blood and Transplant
Do something amazing today - Give Blood.
Organ donation. The gift of life.
You can visit us at [2]www.nhsbt.nhs.uk
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References

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NHS Blood and Transplant

1 Attachment

Our ref: PD/AP/KH/190974

Dear Mr Rawlins

Thank you for contacting us and please find attached the information you
requested.

Yours sincerely

Andrew Pearce

Head of Donor Advocacy

E-mail: [1][email address]

+++++++++++++++++++++++++++++++++++++++++++++++++++++++
NHS Blood and Transplant
Do something amazing today - Give Blood.
Organ donation. The gift of life.
You can visit us at [2]www.nhsbt.nhs.uk
+++++++++++++++++++++++++++++++++++++++++++++++++++++++
The views expressed in this e-mail are those of the sender, and not
necessarily those of NHS Blood and Transplant.
This text confirms that this e-mail message and its attachments have been
swept for the presence of computer viruses by NHS Blood and Transplant,
however we cannot guarantee that they are virus free.
All e-mails and their attachments to and from the nhsbt.nhs.uk domain may
be archived, and their contents monitored.

References

Visible links
1. mailto:[email address]
2. http://www.nhsbt.nhs.uk/