The Hampshire Health Record


This non-commercial website was written by Dr Neil Bhatia, a GP and Caldicott Guardian / Information Governance lead in Hampshire.

Follow @docneilb


This site tells you very simply about The Hampshire Health Record.

The Hampshire Health Record (HHR) is yet another massive central database of medical records, and was established in 2004.

Uploaded to this database are the full GP records from participating GP surgeries as well as records from certain hospitals and NHS trusts, which are then potentially available to very many NHS staff across Hampshire.

The Hampshire Health Record is sometimes known as the Hampshire Clinical Data Repository, for obvious reasons.

The "official" HHR patient website is here.

Just like the Summary Care Record you will not have been asked for your explicit permission before your personal and confidential information is uploaded.

You can find out about all of the NHS Databases, and other NHS data sharing schemes, via www.nhsdatasharing.info


When it come to how your GP-held medical information is used:


Primary uses are uses of data for the main purpose for which they were originally collected directly from the individuals concerned.

For your GP record, this means making that information available, to healthcare professionals that you are seeing, for your direct medical care.

You can download a simple factsheet about data sharing between healthcare professionals here.

You have the right to opt-out of allowing your medical record to be shared, or be directly accessible, for primary purposes - for your direct medical care - beyond your GP surgery, if you so wish.

This may limit the opportunity for certain health professionals (other than those within your GP surgery) to directly access aspects of your electronic GP record in a particular way.

However, it in no way limits all of the other and many ways that your medical information can be made available to those who require it.

That information can be made available by you - the patient - directly, or by temporarily giving the health professional secure online access to your medical record.

That information can, is, and always will be made available to those who require it by your GP, whether directly, by phone, fax, text, letter, email, e-referral or e-prescription.

An example of preventing a primary use of your GP record would be opting out of the Summary Care Record.

You can opt back in and allow all the primary use schemes to extract and upload, or stream your data, or you can opt back into each scheme individually, as you prefer.


Secondary uses are uses of existing data for purposes other than those for which they were originally obtained.

For your GP record, this means making that information available, to anyone (not just within the NHS), for purposes other than providing your direct medical care.

Examples of secondary uses include, research, audit, healthcare planning, commercial and even political uses.

You can download a simple factsheet about the Type 1 secondary uses opt-out here.

You can download a simple factsheet about the Type 2 secondary uses opt-out here.


If you want to express a Type 1 and/or a Type 2 objection, then do so now.

The Government is currently consulting on consent and opt-outs, and it is highly likely that the right to express a Type 1 opt-out (at least, as it applies to the extraction and uploading of information from your medical record to NHS Digital) will be withdrawn from a certain date.

If you haven't opted out by that date then you may not be able to do so anymore.


You have the right to opt-out of allowing your medical information to be used for secondary purposes - in ways unrelated to your direct medical care - if you so wish.

Not allowing secondary uses of your GP record - which will prohibit risk stratification, the national audits and GPES extractions - will in no way affect the medical care that you receive, anywhere in the NHS or privately.

Opting out of secondary uses of your GP record will not prevent medical researchers accessing your information - they just have to ask for your explicit permission first.

An example of prohibiting a secondary use of your GP record would be opting out of one or more of the national audits.

You can opt back in to secondary uses of your GP record at any time in the future. You can opt back in and allow all the secondary use schemes to extract, upload and process your data, or you can opt back into each scheme individually, as you prefer.




Index to sections


  1. What are the purposes of the HHR?
  2. What is uploaded to the HHR - and who is uploading?
  3. What about consent?
  4. Will my hospital records always be uploaded to the HHR?
  5. Who is the Data Controller for my uploaded GP information?
  6. Do GPs need the HHR?
  7. Do I need the HHR?
  8. The HHR and secondary uses of your information
  9. The HHR and The Summary Care Record
  10. The HHR and EMIS Web data sharing
  11. The HHR and your GP surgery
  12. Opting out of secondary uses of the HHR
  13. How do I opt out of the HHR?
  14. Other ways by which you can share your medical information with healthcare professionals outside of your GP surgery
  15. Contact me



What are the purposes of the HHR ?


The Hampshire Health Record is an example of a database that processes your data for both primary and secondary uses.

The information held in the data repository is made available to healthcare professionals across Hampshire, for the provision of direct medical care should you have need to see a clinician outside of your GP surgery. This is known as a primary medical use of information, in the same way that your GP uses your electronic record as held by your surgery.

The information held in the data repository is also made available to organisations for the purposes of research, healthcare planning, audit etc. The information is disseminated in both anonymised and pseudonymised (potentially identifiable) formats. This is known as secondary uses of your information, as it has nothing to do with your direct medical care.

You can find out more about the secondary uses of information uploaded to the HHR in this FOI response, and this FOI response, and on this page of the official website.


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What is uploaded to the HHR - and who is uploading information about me?


GP surgeries, hospital trusts, community services, mental health trusts and local councils are all uploading information to the HHR.

Your entire GP record is uploaded to the HHR, that is every single coded entry on the GP electronic record. All diagnoses and medication, all results and all values and measurements. The only thing not uploaded is free text.

The Hampshire Health Record will only apply to you if :

Your GP surgery is required by law to tell you if it is uploading your information to the HHR.


Organisations that are uploading information that they hold about you (for example blood tests, xray results, clinic letters, care plans and hospital discharge letters) include:



Organisations that do not currently upload to the HHR include:


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What about consent ?


Confidentiality and consent are at the root of the trust between a patient and their GP.

An assumption has been made that everyone in Hampshire will be happy to have their GP records uploaded to this database and processed for:

Just like the Summary Care Record, in order to prevent this happening to your records, should you wish, you have to actively opt-out.

Between January and March 2005 - that is, about 10 years ago - 750,000 leaflets were delivered by Royal Mail to households within Hampshire and the Isle of Wight outlining the HHR. This was supposedly to provide comprehensive informed consent to the entire population of Hampshire & IOW and was based on an implied consent model - i.e. an opt-out model. You had to opt-out to prevent your medical records from being uploaded.

But the leaflets were unsolicited junk mail - the same sort of rubbish that comes through our letterboxes everyday advertising double-glazing, pizzas and the latest 2 for 1 offers from the local supermarket. It is very likely that many people in Hampshire never received the leaflet, never opened it up (binning it or recycling it without looking at it), never read it or never realised what it meant.

The HHR's attitude to 'obtaining' consent in this way was heavily criticised by the Department of Health.


"We have learnt from what Hampshire did, because we believe that it did not go to every person who needed to learn about it, and I have learnt more about the junk mail rule than I ever want to know, but it exists and you need to send to every addressed adult in order for it not to get thrown away if you have got Safeways or Tescos trying to tell somebody something at the same time."

Connecting for Health, oral evidence to the HSC Enquiry into the EPR


Today, few people in Hampshire are likely to be aware of the HHR. Hundreds of thousands of people will have had their records uploaded without their knowledge or understanding, and thousands more are at risk of this happening to their data in the future.


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Will my hospital records always be uploaded to the HHR - and can I prevent that?


Medical data for every single patient treated or investigated at contributing trusts is exported to the HHR.

Data:

is nevertheless exported to the HHR.

There is no point applying to University Hospital Southampton NHS Foundation Trust to prevent your hospital data from being extracted and uploaded to the HHR database.
That trust does not have policies or procedures in place to register and action any such objection.
You cannot prohibit the processing of your information in this way.

There is no point applying to Portsmouth Hospitals NHS Trust to prevent your hospital data from being extracted and uploaded to the HHR database.
That trust does not have policies or procedures in place to register and action any such objection.
You cannot prohibit the processing of your information in this way.

There is no point applying to Hampshire Hospitals NHS Foundation Trust to prevent your hospital data from being extracted and uploaded to the HHR database.
That trust does not have policies or procedures in place to register and action any such objection.
You cannot prohibit the processing of your information in this way.

There is no point applying to The Royal Bournemouth and Christchurch Hospitals NHS Foundation Trust to prevent your non-GP data from being extracted and uploaded to the HHR database.
That trust does not have policies or procedures in place to register and action any such objection.
You cannot prohibit the processing of your information in this way.

There is no point applying to Solent NHS Trust to prevent your non-GP data from being extracted and uploaded to the HHR database.
That trust does not have policies or procedures in place to register and action any such objection.
You cannot prohibit the processing of your information in this way.

All you can do is to opt-out of the HHR entirely at your GP surgery.

This will not stop your data being extracted and exported from your hospital or non-GP records, but will ensure that they are deleted upon arrival at the HHR database.

Opting out of the HHR entirely will ensure that either no personal confidential information about you from your GP record is extracted and uploaded, or that any already uploaded information is "blanked" or made unavailable, and that no further information is uploaded.

Opting out of the HHR entirely will also ensure that no personal confidential information about you from your hospital or other such record is stored in the HHR.

You GP record, hospital record, and any other non-GP records, remain unaffected if you opt-out. They remain, as always, available to relevant clinical staff as required.



Southern Health NHS Foundation Trust is one organisation that does allow patients to opt out of having their information sent to the Hampshire Health Record. Just like your GP surgery, they can set an electronic flag on their database so that information derived from their Rio database system is not extracted and uploaded to the HHR for any given patient.

However, the data controller for the HHR does not automatically provide Southern Health with the names and details of patients who have opted out of the HHR (and so therefore do not have a record on the HHR database).

If you wish, in addition to opting out of the HHR via your GP surgery, you can request that Southern Health does not extract and upload your information to the HHR database in the first place (albeit that the information would be ultimately deleted if you had opted out via your GP as well).

Should you have need to see a clinician from Southern Health, for example a District Nurse or Health Visitor, you can ask them in person to dissent you from their HHR feed, there and then on the Rio database.

Alternatively, you can send your request to Southern Health, though you have to make that request by email.

A suitable letter, including the email address to send it to, can be downloaded here, filled in, and attached with your email.

Remember to opt-out of the HHR at your GP surgery as well, unless you still want a Hampshire Health Record - but one that excludes information about you from Southern Health.

Be reassured - these actions will in no way limit the ability for Southern Health clinical staff to access your Rio record as and when required.
It just stops your information being extracted and uploaded in the first place (an action which has no purpose or justification if you have already opted out of the HHR via your GP surgery).


Hampshire County Council is the other organisation organisation that does allow patients to opt out of having their information sent to the Hampshire Health Record.

However, the data controller for the HHR does not automatically provide Hampshire County Council with the names and details of patients who have opted out of the HHR (and so therefore do not have a record on the HHR database).

If you wish, in addition to opting out of the HHR via your GP surgery, you can request that Hampshire County Council does not extract and upload your information to the HHR database in the first place (albeit that the information would be ultimately deleted if you had opted out via your GP as well).

You will need to download and fill in this form, and send it to Hampshire County Council (address is on the form). Section 1 has been already filled in to request that your information is not extracted and uploaded to the HHR, but you will need to fill in sections 2 and 3 as you see fit.

The "Your Information" booklet, mentioned in the form, can be found here.

Remember to opt-out of the HHR at your GP surgery as well, unless you still want a Hampshire Health Record - but one that excludes information about you from Hampshire County Council.

Be reassured - these actions will in no way limit the ability for Hampshire County Council staff to access any information that they hold about you on their datatbase, as and when required.
It just stops your information being extracted and uploaded in the first place (an action which has no purpose or justification if you have already opted out of the HHR via your GP surgery).


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Who is the Data Controller for my uploaded GP information ?


The data controller of your Hampshire Health Record is the Caldicott Guardian for the hosting organisation, NHS South, Central and West CSU.

Just like the Summary Care Record, whilst your GP controls your medical records as held by your surgery he/she is not the Data Controller for any records uploaded and stored on the HHR. Your GP has no control whatsoever over that data, although your GP can very easily set in motion the process to get your records deleted once your realise that they have been uploaded and if you wish.

The Data Controller alone decides the purposes for which your uploaded data is, or will be, processed and the way in which your uploaded data is, or will be, processed. He alone decides who has access to your records, and whether or not to seek your consent for any such access.


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Do GPs need the HHR ?


The HHR has been sold to GP practices as a way of getting to see results, xrays, letters from hospitals. But most GP practices receive blood results, pathology results, discharge summaries, hospital clinic letters and cervical smear results electronically and directly into the GP system. GPs generally do not have to logon to a separate system (such as the HHR) to access them. Many surgeries have access to all blood results on any of their patients, for example via an integrated application called Sunquest ICE. Any other results that they need a report on more urgently can be obtained immediately by ringing their local hospital laboratory or xray department and getting the result over the phone, by fax or by secure email.

Surgeries receive radiology results once they have been authorised by the Consultant Radiologist. They can obtain any result (by fax or secure email) urgently by ringing the local hospital x-ray department. They can access many results x-ray online (see below)

Surgeries receive reports from NHS 111 and their local out-of-hours provider on any of their patients that have been seen as an emergency in the evenings, at the weekends and on bank holidays. These reports are received electronically and directly into GP records system (such as EMIS Web). GPs check these reports every morning.

Surgeries can send information to their local out-of-hours provider on any of their patients in case they are seen there instead of the surgery. This is commonly done for patients with very complex medical problems, for those patients who are terminally ill, and for patients who are predicted to become unwell when their GP surgery is shut. They can do this via a secure web portal, for example using Adastra's Web Access software (Adastra is the biggest provider of clinical systems to GP out-of-hours organisations). GPs can login securely and add specific and relevant information directly to the database (see here for information about their end-of-life register).

GP surgeries in North East Hampshire and Farnham, using Frimley Park Hospital, can access that hospital's computer system via a secure link known as GP Browser. It enables them to instantly access certain bloods results, x-ray reports and out patient appointments on any of their patients. They can also find out whether any patients have been admitted to the hospital or been discharged, as well as reasons for any admission to hospital.


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Do I need the HHR ?


The choice to make your medical information widely accessible should be your active and explicit one.

There are many, and better, ways to make your medical information available to others if you need to or want to. The HHR is not the only way.

Not having an HHR, or opting out of the HHR, will in no way affect the medical care and treatment that you receive from your GP surgery, or affect the ability for your GP to refer you to a specialist for further care, should this be necessary. You remain fully (and legally) entitled to all the NHS care that you require, either from a GP, hospital A&E department or a hospital specialist, wherever you are in the UK.

Not having an HHR, or opting out of the HHR, in no way limits all of the other and many ways that your medical information can be made available to those who require it.

That information can be made available by you - the patient - directly, or by temporarily giving the health professional secure online access to your medical record.

That information can, is, and always will be made available to those who require it by your GP, whether directly, by phone, fax, text, letter, email, e-referral or e-prescription.

You will not be opting out of the NHS in any way.


In a Freedom of Information response, Frimley Park Hospital have confirmed that thay have no intention of refusing to provide, or of refusing to continue to provide, medical treatment to patients who have either opted out of the Summary Care Record and/or chosen not to have a Hampshire Health Record.


The HHR has absolutely nothing to do with the ability to securely access your GP electronic record online, as you are entitled to from 1st April 2015. Secure records access (as it is known) does not involve uploading information extracted from your GP record, and your GP surgery remains the data controller for the information. You GP records are only available to you in this way. In contrast to the HHR, you will need to give your explicit consent before your records are made available via secure records access.

Opting out of any or all of the NHS Databases, whether the HHR, the Summary Care Record or secondary uses, in no way prevents you from asking for, and being granted, secure online access to your GP electronic record.

You can find out about accessing your medical record online in this factsheet. EMIS is one GP software system that already offers this, but the other GP software systems will be doing this as well.

If you are interested in obtaining secure online access to your GP record then just fill in this form and hand it in to your GP surgery.

In addition, the HHR or any of the NHS Databases have absolutely nothing to do with the ability to securely access some aspects of your hospital records online, again only at your explicit request. These portals include Patient Portal and Patient View.


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Do I need to opt out of the HHR if I have already opted out of secondary uses of my GP record?


The Hampshire Health Record processes uploaded personal confidential information for primary and secondary uses.

Secondary uses are uses of existing data for purposes other than those for which they were originally obtained.

For your GP record, this means making that information available, to anyone (not just within the NHS), for purposes other than providing your direct medical care.

For further information about secondary uses, please visit www.nhsdatasharing.info

Secondary uses optouts, such as for the national audits and risk stratification, do not automatically prevent uploading of your personal and confidential information to the HHR.

You have the right to opt-out of The Hampshire Health Record entirely (at any time) and not allow your personal and identifiable information to be extracted from your GP record, uploaded, and processed for both primary and secondary purposes.

Alternatively, you have the right to opt-out of secondary uses of your uploaded information. This will not stop your pesonal confidential information from being extracted, uploaded and used for primary purposes by the HHR, but will prevent any secondary uses of your uploaded information by the HHR, as well as preventing the extraction and secondary uses by other projects such as the National Audits, risk stratification, and sick note data extractions to the DWP.

The data controller for the HHR, NHSSCWCSU, has confirmed that the presence of the secondary uses objection code, 9Nu0, in the GP record will prohibit secondary uses of any personal confidential data uploaded to the HHR, assuming any information is uploaded in the first place.

Only two contributing organisations, Hampshire Hospitals NHS FT and Southern Health NHS FT, prohibit the information that they upload from being processed for secondary purposes by the HHR database (whether the 9Nu0 flag is present in your GP record or not).

All other organisations that feed the HHR permit secondary uses of the information that they extract and upload.

Some information uploaded will not be in a format that can be subsequently processed for secondary purposes #45; for example, The Royal Bournemouth and Christchurch Hospitals NHS Foundation Trust only transfers discharge and clinic letters in PDF format into the HHR.

You cannot control how your data is used for secondary purposes by the HHR, for example to whom that data is given or for what reason, only prevent its use for such purposes entirely.

Opting out of the HHR entirely (9Nd1) will ensure that either no personal confidential information about you from your GP record is extracted and uploaded, or that any already uploaded information is completely deleted and that no further information is uploaded.

Opting out of the HHR entirely (9Nd1) will also ensure that no personal confidential information about you from your hospital record is stored in the HHR (it will be deleted upon arrival).

Opting-out of either the HHR or secondary uses, or both, will not in any way affect the medical care that you receive from your GP surgery.


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Do I need to opt out of the HHR if I have already opted out of the Summary Care Record ?


The Hampshire Health Record and the Summary Care Record are two entirely separate databases.

For further information about the Summary Care Record, please see my other site.

If you have already opted out of the SCR, you will have the read code 9Ndo in your GP record.

If your GP surgery runs EMIS software as its GP system then opting out of the SCR automatically opts you out of the HHR.


"EMIS' approach is take the presence of 9Nd0 as sufficient to stop any data from leaving their system, so if this code is applied to a patient in an EMIS practice then their data will not be passed to Graphnet, irrespective of the logic in our extract service."

Graphnet, the software that uploads data to the HHR


So you do not need to additionally opt out of the HHR, though you can do so if you wish.

But if your surgery does not run EMIS software, and instead runs software such as Vision, Synergy or SystmOne, then the SCR optout will not automatically opt you out of the HHR, and you will need to opt out separately as below.

If in doubt, opt out.

Opting-out of either scheme, or both, will not in any way affect the medical care that you receive from your GP surgery.


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Is the HHR the same as EMIS Web data sharing ?


The Hampshire Health Record and EMIS Web data sharing are two entirely separate schemes.

For further information about true, interoperable data streaming, please visit www.nhsdatasharing.info, or alternatively have a look at this example factsheet from North East Hampshire and Farnham.

EMIS Web data streaming, sometimes referred to as the MIG, involves information from your GP record being "streamed" in real time and on-demand, meaning that data from your GP record is neither extracted, nor uploaded, nor sent anywhere. The data remains within the surgery database and select organisations, such as your local Accident and Emergency department or GP out-of-hours centre, are only allowed to "view" it.

Since no information from your GP record is extracted or uploaded anywhere with data streaming, there are no secondary uses of the information made available.

In contrast with the HHR, your GP surgery remains the data controller and so controls who has access to your information, and can monitor who has accessed your information.

If data streaming is available in your area, then:

Opting out of EMIS Web data streaming will, however, automatically opt you out of the Hampshire Health Record.

Opting-out of either scheme, or both, will not in any way affect the medical care that you receive from your GP surgery.


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Can my GP surgery tell me when my HHR has been accessed, where, and by whom, or used for secondary puposes ?


No.

Your GP surgery is not the data controller for your uploaded information.

If you wish to find out when your HHR has been accessed by a healthcare professional - for primary purposes - you have to apply directly to NHS South, Central and West CSU, providing proof of identity.

Details of how to do this can be found here.

But you cannot find out if or when your HHR record was used for secondary purposes, what information about you was disseminated, or to whom.


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Can I opt-out of the secondary uses of my uploaded information but still allow healthcare professionals to view it, should I give my explicit consent at the time ?


Yes.

You have the right to opt-out of secondary uses of your uploaded information, by requesting that the 9Nu0 flag is added to your GP record. This alone will not stop your personal confidential information from being extracted, uploaded and used for primary purposes by the HHR (for your direct medical care), but will prevent any secondary uses of your uploaded information, both by the HHR and by other projects such as the National Audits, risk stratification, and sick note data extractions to the DWP.


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How do I opt out of the HHR, or get my uploaded data made unavailable ?


You have a choice. You do not have to allow your medical records to be uploaded to, or remain available via, the HHR database.


If you discover that your records have been uploaded, and you wish to have them made unavailable, then you can.

If you no longer want your records to be on the HHR, and you wish to have them made unavailable, then you can.

If you do not want your records uploaded to the HHR and wish to prevent any such uploads, then you can.

YOU can decide:

You can change your mind and join, or rejoin, the HHR at any time.

Opting out of the HHR will have no effect on your medical records as stored by your GP or local hospital.

Opting out of the HHR will have no effect on the care that you receive from either your GP or your local hospital.

In a FOI response, the HHR office has stated:

All your GP has to do is to add the read code 9Nd1 or 93C1 into your records, either to prevent any upload to the HHR or to delete any uploaded data from the HHR should you discover that this has happened to your data.

GP surgeries may prefer to add the 9Nd1 read code into your records, as the 93C1 code can have unintended consequences beyond that of simply prohibiting uploading of the GP record to the HHR. Your surgery will decide which code is appropiate - both are equally effective.

Opting out will ensure that either no personal confidential information about you from your GP record is extracted and uploaded, or that any already uploaded information is "blanked" or made unavailable, and that no further information is uploaded.

Opting out will also ensure that no personal confidential information about you from your hospital record is stored in the HHR (it will be deleted upon arrival).

ANY communication (in person, by letter, email, fax, telephone or text) to your GP stating your wish to opt out or have your data deleted is valid.


You can opt out or delete your data using a simple opt-out letter for your GP:

This form will allow you to opt-out of all of the NHS Databases or just the Hampshire Health Record, as you wish.

Download the generic opt-out form in PDF format

Download the generic opt-out form in DOC format

Download the generic opt-out form in RTF format

Do NOT send your letter to the HHR office. Your GP is responsible for adding the code to your records.

You can opt out or delete your data verbally (without an opt out form or letter) by:

Once again, request that your GP adds the read code 9Nd1 or 93C1 into your records.

Do NOT ring, email or attend the HHR office to opt out or delete your data. Your GP is responsible for adding the code to your records.

And be reassured that:

But please note : opting out of the HHR alone will not opt you out of either the Summary Care Record or secondary uses of your GP data, such as risk stratification or the national audits.

You will need to opt out of these separately, or opt out of all of the NHS Databases at once (via www.nhsdatasharing.info ).


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Other ways to share your GP information


When it comes to allowing healthcare professionals outside of your GP surgery access to information from your GP record, you have options:


You can have any combination of the above, opting out of any particular data sharing schemes, and/or opting in to any that you wish to.

You can find out about all of the NHS Databases, and other NHS data sharing schemes, via www.nhsdatasharing.info


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Contact me

Feel free to send me constructive comments about this site.

Neil.Bhatia@nhs.net

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I will read every comment sent, though please do not be offended if I do not reply to your message.

Privacy policy: I will not sell, trade or otherwise transfer to any third parties your personally identifiable information (your email address or the content of your email)


Last updated: 25.07.17

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