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[mythoughts]

Good thing? Bad thing? Sounds like a good idea in principle, but there could be lots of problems though? Isn't an automatic opt-in to this system if you fail to actively opt-out a breach of confidentiality, possibly against the Data Protection Act and a stunning lack of courtesty to patients?
 
I expect many people won't have a clue what to do and will worry where their private information will end up. I'd also wonder how up to date this will be and thus the potential for a false picture to be painted if you end up in A&E unconsious. On the other hand, is it better that the person treating you knows your medical background and current prescriptions etc?
 
Personally, if I was assured/convinced that the system was completely secure, worked in real-time and I had the option to opt-in rather than be automatically opted-in if I did nothing I would probably do this. As it stands, it's yet another thing to add to my "To do" or maybe my "Not to do" list. Then again, if it goes in my "not to do" tray then the NHS will do it for me....yikes!
 
http://www.stalbansreview.co.uk/news/5027927.New_computer_health_records__in_Hertfordshire/
 
http://www.computerworlduk.com/management/government-law/public-sector/news/index.cfm?newsid=19036
 
http://www.nhscarerecords.nhs.uk/

[mythoughts]

At least our PCT is actually sending out information packs to patients = other bodies have changed their minds and are simply sending out letters and asking people to call a premium hotline which can cost more than 20p a minute.
 
 

Patients have been told to call a paid 0845 hotline number if they want advice about how their electronic records will be used by the NHS, after Government IT managers reneged on promises to provide detailed information, Pulse can reveal.

 
http://www.pulsetoday.co.uk/story.asp?sectioncode=23&storycode=4125163

[Lid]

This would be really useful if they could get it right. I have yet to find a surgery that have set up a sensible ' header page' for each patient stating key things such as allergies, current medication, numbers of children, ops undertaken, current medical conditions, etc. Perhaps they should start with this first and only make it more available beyond your own surgery when it is proven to be accurate and working.

[Hatfield Girl]

Lid,
Lister House has that.  I noticed it the last time I went for a test.

[GhostTown68]

MT do you work as headline writer for the Daily Mail?! Whats the thread title all about?!

SCR's, if managed correctly (which the Herts PCTs at least will) are a massive step in the right direction for patient record keeping. A lot of patient records are already stored electronically, this will just enable sharing of necessary data with relevant parties.

The opting in/opting out bit is another story altogether, theyve sent a letter to everyone explaining exactly what it is, and how to opt out - I'm not sure what more they could do to be honest? Have you got a better idea MT?

[mythoughts]

MT do you work as headline writer for the Daily Mail?! Whats the thread title all about?!

SCR's, if managed correctly (which the Herts PCTs at least will) are a massive step in the right direction for patient record keeping. A lot of patient records are already stored electronically, this will just enable sharing of necessary data with relevant parties.

The opting in/opting out bit is another story altogether, theyve sent a letter to everyone explaining exactly what it is, and how to opt out - I'm not sure what more they could do to be honest? Have you got a better idea MT?

I actually complemented our PCT's approach on this if you read my thread, juxtaposing it against other PCTs deciding to save money and pass the cost onto patients by simply sending them a letter and forcing them to phone a premium hotline number to find out more.

However, an important issue has come to my attention today regarding this: as our PCT's packs hit many peoples' doormats today it's evident that a bit more data cleansing needs to have taken place. One person I know, had several packs arrive for previous occupants of his house that hadn't lived there for over 15 years! Furthermore, somebody else I spoke to got their pack but the person that lives with her didn't.  Bearing in mind I only spoke to two people about this, that's a 100 per cent error rate so far. Other people reading this thread might also have had letters delivered to them today that were addressed to people that didn't live at their home anymore and perhaps they'd like to post here if they did.
 
That being so, the automatic opt-in if you don't respond strategy adopted is clearly flawed in that people that might have moved away and hadn't informed their GP and hadn't registered with a new one (whereby their records would be moved on) will have their personal data transferred to a system without them knowing. Indeed, the post being what it is, many packs will simply never get delivered.

From personal experience, and this was many years ago when I was 20, I went to see my doctor. The first things he asked me were "How are you getting on with your angina medicine?" He also asked how I was coping walking since "the accident". Not having angina and not ever having an accident that affected my walking I asked him to double-check he had the right records in front of him. He didn't. He was referring the records of someone with the same name who was actually 86!!! That being so, I insisted access to my medical records and found numerous mistakes that had to be corrected.

In a nutshell, I'm not knocking the PCT here I'm simply saying that I think a lot more work had to be done before releasing this system. And I'm not alone in this.


Mindful of this, before I decide to sign up to this system, I'll ensure my current surgery has the right information about me on its system.
 
On the whole, I don't agree with any "we'll opt you in if you don't respond" approaches. Imagine if they did this with, for example, voluntary ID cards or organ donations?

[GhostTown68]

If that happened on a paper record, then why would it being electronic make it any more likely? Why stick with the existing system?

SCR's work on your NHS number, the unique number assigned to each patient in England. Althought mistakes can happen, there are a lot more measures in place to prevent this than with the current 'bits of paper in a folder' method.

As I've said before, I've worked very closely with the NHS in the past and know the current PDS Spine system inside out. I no longer work in this capacity so have nothing to gain from blindly supporting this, based on my own extensive knowledge I can assure you that managed correctly (which in our area it will be) this is a great advance for patient care in England.

Your demographics have already been on the Spine for years.

[mythoughts]

If that happened on a paper record, then why would it being electronic make it any more likely? Why stick with the existing system?

SCR's work on your NHS number, the unique number assigned to each patient in England. Althought mistakes can happen, there are a lot more measures in place to prevent this than with the current 'bits of paper in a folder' method.

As I've said before, I've worked very closely with the NHS in the past and know the current PDS Spine system inside out. I no longer work in this capacity so have nothing to gain from blindly supporting this, based on my own extensive knowledge I can assure you that managed correctly (which in our area it will be) this is a great advance for patient care in England.

Your demographics have already been on the Spine for years.

I don't recall you revealing that. That being so, you'll be very familiar with the phrase "garbage in garbage out" As it stands, I only talked to two friends about this asking their thoughts 1) one had two packs sent to people that hadn't lived at their house for over 15 years 2) at the other friend's house, so far I suppose (it might arrive within the next few days) their partner did not get a pack.
 
Anyway, I don't think we're that far apart in terms of the principle of someone treating you having access to accurate records, it's more of a case that I think a lot more planning and thinking needed to have been done before launching this. Like many NHS IT projects, it could turn into a complete nightmare.
 
Let's agree to watch this space - especially as I want to see the end of Top-Gun...nighty night.

[GhostTown68]

If that happened on a paper record, then why would it being electronic make it any more likely? Why stick with the existing system?

SCR's work on your NHS number, the unique number assigned to each patient in England. Althought mistakes can happen, there are a lot more measures in place to prevent this than with the current 'bits of paper in a folder' method.

As I've said before, I've worked very closely with the NHS in the past and know the current PDS Spine system inside out. I no longer work in this capacity so have nothing to gain from blindly supporting this, based on my own extensive knowledge I can assure you that managed correctly (which in our area it will be) this is a great advance for patient care in England.

Your demographics have already been on the Spine for years.

I don't recall you revealing that. That being so, you'll be very familiar with the phrase "garbage in garbage out" As it stands, I only talked to two friends about this asking their thoughts 1) one had two packs sent to people that hadn't lived at their house for over 15 years 2) at the other friend's house, so far I suppose (it might arrive within the next few days) their partner did not get a pack.
 
Anyway, I don't think we're that far apart in terms of the principle of someone treating you having access to accurate records, it's more of a case that I think a lot more planning and thinking needed to have been done before launching this. Like many NHS IT projects, it could turn into a complete nightmare.
 
Let's agree to watch this space - especially as I want to see the end of Top-Gun...nighty night.

I worked for one of the developers of clinical systems on the Eastern cluster a few years ago, on the PDS side.

I understand what you are saying, but lost letters could just as easily be down to the postal service, as for incorrect addresses - again the data is only as current as we keep it, it doesnt like to the electoral roll so I would've thought these letters were generated from the Spine (which is generally GP led). My first thought was 'what a waste of money' for these packs to be sent at all, but I couldnt think of a better way of doing it to be honest.

I agree though, something massive like this needs a lot of planning. I have every confidence in the principle though.

[mythoughts]

Doctors are concerned about the rapid roll-out of the patient database, and are helping people who don't want to be on it
http://www.guardian.co.uk/commentisfree/henryporter/2010/mar/02/nhs-spine-database-opting-out

Patients Are Not Being Adequately Informed About Electronic Patient Records, Says British Medical Association
http://www.medicalnewstoday.com/articles/180709.php
 
Health records privacy risk is clear http://www.publicservice.co.uk/news_story.asp?id=12281   
 

[Anne]

In theory I'm in favour of this sort of system... but I would like to add an extra facility to allow patients to be able to read (only) their own records.

Mistakes and ambiguities would be much easier to sort out if they were noticed earlier rather than perhaps a few years later.

[GhostTown68]

This is pretty ridiculous - "the new system, WHICH DOESNT WORK IN SCOTLAND OR ABROAD"...... crumbs! you mean the existing 'bits of paper in a foolscap folder' system does?!

The only valid argument here is for patients making an informed decision. Addresses etc. are only as accurate as their local GP, which is only as accurate as the patient allows it to be (not necessarily deliberately, if you're not someone who goes to the GP often data could easily be out of date).

With the horror stories about data security and so on, I can understand the man on the street being a bit cautious with this - I can also understand this concern being exploited this close to an election.

The Spine has stored patient demographic details for years, its not a new system by any stretch. Furthermore, your records are already stored electronically on a computer system (most likely), this SCR will simply allow that information to be seen by relevant parties at a relevant time. Every access to your record is audited, every clinician that views your record is accountable, every access to your record is logged against that person.

Frequently asked questions                                                               by           reli1            —                                                                   last modified                          2009-08-24 16:32                                                                                                                        The NHS Care Records Service | My Health Records | How safe are my records? The NHS Care Records Service What is the NHS Care Records Service? The NHS Care Records Service is a secure service that links patient information from different parts of the NHS electronically so that health-care staff and patients, have it when they need it to make care decisions. How will the NHS Care Records Service work? At the moment, a lot of information is kept within one NHS organisation and not easily available anywhere else.
With the new system, people who are treating you will be able to access those parts of your records that they are allowed to see whenever they need it to provide you with care.
You will be able to see your Summary Care Record whenever you want to online via HealthSpace and together you will be able to make informed decisions about your care. You can choose what information is available to those treating you. Why do we need the NHS Care Records Service? The NHS Care Records Service will improve the safety and quality of patient care and give patients more control over who sees their records and the ability to view their records. I have received a letter addressed to someone else/the person on the letter you sent no longer lives at my address/the person on the letter has died/etc/what should I do with it? You should return the letter to your Primary Care Trust or GP Practice. They will then be able to update their records accordingly.

Back to the top

My Health Records What information will you include in my NHS Care Record? In the future, you can have an electronic NHS Care Record made up of a Summary Care Record and, over time, more detailed records. Can I access my own records? Yes, you can already ask to see your records where you are treated, at your GP, hospital or clinic. You will need to follow the procedures laid out by the Data Protection Act - i.e. make an application in writing or, if that's not possible, by some alternative method.
You may have to pay a small charge. You can also ask to see a copy of the GP Summary contribution to your Summary Care Record before it is created. Your Primary Care Trust or GP Practice can tell you where you can do this.
When your Summary Care Record has been created you will be able to see it through HealthSpace, a secure Internet site, free of charge, any time you like, by using your computer. Will the NHS ask my permission to create my Summary Care Record? You will be contacted by your GP Surgery or Primary Care Trust (PCT) before your Summary Care Record is created and you will have several weeks to think about your options.
An information pack will be sent to you that will explain the changes that are taking place and your options. How long will I have from receiving the leaflet to making my choice about whether I want a Summary Care Record and what information I want to share? The letter you received from your GP should mention a date, sometime after which your Summary Care Record will be created.
There will be a minimum period (currently 12 weeks) from when the information is sent to you before your Summary Care Record is created. What will happen if I choose not have a Summary Care Record? The NHS will always endeavour to provide you with the best care possible. However, it could mean that there might be times when key health information about you is not available.
For example, if you do not have a Summary Care Record and are taken into A&E, then the staff in A&E may not be able to access your current medications, allergies or bad reactions to medicines if they cannot access your Summary Care Record.
The same could apply if you need a doctor outside surgery hours. Please read the NHS leaflet If I do not have a SCR (PDF, 34 Kb). Can I limit particular items of sensitive information being accessed in various places where I receive care? Yes, you will be able to limit access to all or parts of your Summary Care Record. If you have concerns and want to limit access to sensitive information in your record, please contact your GP Surgery to find out who, at your local surgery you can discuss your options with. Will I be asked for permission to view my Summary Care Record? Yes, you are in control of your record and who can access it - you will be asked at the point of care if those treating you can look at your Summary Care Record. Will other people than those delivering my NHS care be able to access my records? People outside of the NHS will not be able to access your record without your permission other than in circumstances where it is allowed by law.
This is explained in the leaflet NHS Care Record Guarantee: Our Guarantee for NHS Care Records in England (PDF, 92Kb). Can I stop information being put into my record? Health- care staff are required to make accurate, relevant records of the care provided. You can discuss what is recorded, where it is recorded and how it is expressed but you cannot prevent a health-care professional from making some record of relevant information. Can I change information on my NHS Care Record? You cannot change information written by others, however if you spot an error you should let your GP know. Can I add information to my NHS Care Records? Not now, but in the future you will be able to add information such as your treatment preferences.

Back to the top

How safe are my records? Is the NHS Care Records Service safe from hackers? It would be very difficult to hack into it because the system uses the strongest national and international security measures available. It uses stronger safeguards than Internet banking. Could my records be accidentally deleted or lost? No there is strong protection to prevent any information about you being lost or deleted. The information is copied to a separate secure site so there is always a back up. What are my rights about how you keep my information confidential? You have the right to expect us to keep your health information private. You also have rights to make sure we keep your details confidential under the Data Protection Act, human rights legislation and the common law.
In every place we treat you, there are people who are responsible for making sure your details are kept confidential. They are sometimes known as Information, or Caldicott, Guardians.
Your rights to privacy and our commitment to protect them are set out in the NHS leaflet Your health information, confidentiality and the NHS Care Records Service (PDF, 82Kb). How do I find out who has looked at my Summary Care Record? A record is kept of everyone who looks at your Summary Care Record and an alert will be sent to a nominated member of staff where access occurs in an unexpected setting, for example, if a clinician who doesn't usually treat you accesses your information. If it is found that the access was unreasonable, we will let you know.
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[Lid]

In theory I'm in favour of this sort of system... but I would like to add an extra facility to allow patients to be able to read (only) their own records.

This facility will exist from the start. I rang and asked them.

[mythoughts]

On the back-page of today's Welwyn Hatfield Times a man has complained that his Summary Care Record pack contained a pack within addressed to another person. That pack would have contained the other person's confidential NHS number.
 
As you can see above, I've already pointed out people receiving letters at their house for occupants long "gone away". The PCT thinks this is an isolated issue but has pledged to undertake a thorough investigation. I really think it also needs to re-check the accuracy of its database (it's clearly out of date) not just problems at the mailing-house.
 
 

[Anne]

In theory I'm in favour of this sort of system... but I would like to add an extra facility to allow patients to be able to read (only) their own records.

This facility will exist from the start. I rang and asked them.

Apparently patients will be able to read a very brief summary of their medical records... such as medication / pills, and little else.

Personally I don't see the sense of this. If I am well enough to access my records, then I would guess that I might be well enough to know what pills I'm on, especially if I have a repeat perscription and a cupboard full of labelled bottles.

There might be a case for parents / guardians / carers / etc., but this would need very extreme security measures...