Access to NHS care records may be widened

Tags: Choice Community DH feedback GP NHS Choices NICE QoF Quality reporting Social care Vision

03 Jul 2008

The Department of Health is to review the scope of access to the NHS Care Records Service, including the possibly of making them available to non-NHS staff.

Under the proposals the DH will look at making the electronic patient records available to a much wider range of groups involved in patient care, including social care bodies, voluntary and private sector organisations and pharmacy, dental and optical services.

The plan is published today in ‘Our vision for Primary and Community Care' report, published today as part of the Next Stage Review of the NHS.

The DH says the aim of widening access to the CRS is to ensure that patients can be quickly given vital information in any care settings. The aim is to achieve more integrated care between all care settings – both within and outside of the NHS.

The report says: “To support more integrated care, we will review the scope of access to NHS Care Records Service to embrace a fuller range of organisations that provide care to NHS patients, including social care, voluntary and private sector organisations and pharmacy, dental and optical services.

“Our aim is for health professionals to be able to provide the best care and advice to patients quickly by accessing the information they need (e.g. on medical history or medication) from any setting.”

The next stage review for Primary and Community Care says that improved information and information tools will be used to ensure that patients get the care they deserve from primary and community care.

“We will assess the key improvements in information management and technology systems that are needed to improve data sharing, speed up access to appointments, support evidence-based practice and underpin strategic commissioning,” says the report.

“Our vision for Primary and Community Care' makes clear the central role that improved information use are expected to play: “We live in an information age. Companies succeed when they seek out ever more sophisticated ways of understanding their customers, listening and responding to their views. GP practices and other primary and community care teams should do the same.”

Today’s report also gives more details on the central role NHS Choices will play in helping realise the goals set out for the next decade.

“We will create a secure web-based system on NHS Choices called ‘HealthSpace’. This will allow people to access their personal health record, and update it frequently with information about their condition.

“It will facilitate communication between the individual and their care team, as well as allowing people to book appointments and request repeat prescriptions.”

Later this year, a national ‘Patients’ Prospectus’ will also be published on the NHS Choices website setting out choices which should be available for self care, such as telemedicine devices.

More comparative information about the range of services offered by GP practices – including their performance against quality indicators, as well as a “simpler way of registering electronically within a GP practice”. Patients will also be able to leave feedback on the website,

New information tools will be piloted to compare clinical quality, clinical productivity and patient experience in community health services and the Quality and Outcomes Framework (QoF) will be reviewed, as reported earlier this week.

Health minister, Ben Bradshaw, said more points should be given for prevention than the 5% offered at the moment.

“We want QoF to reflect our objectives of promoting healthy lives. I’d like to see much more focus on points for prevention and ensuring the patient population is receiving the best medical advice possible, though this is currently under discussion and by no means set in stone,” he said.

The report says NICE and patient groups are reviewing this to attempt to reduce the number of organisational or process indicators, and instead offer a series of quality indicators, which GP practices will be able to choose from. This will include patient recorded outcome measures.

As part of the new legal right to free choice of where patients go fro treatments, this will be published on NHS Choices “ to provide much greater transparency about the quality of local services and support the public in making more informed choices about which services to use.”

A process has been started to look into a new three-digit number to help find local services for urgent unplanned care needs and the report pledges that ‘the public should not expect to have to pay more than the cost of a local call when telephoning their practice.’

More support and development for PCTs to use in commissioning are also pledged including the use of predictive modelling and risk stratification tools, and the development of datasets to allow commissioners to collect, analyse and publish information, which can then be broken down for reporting purposes.

Bradshaw said: “Britain’s primary care system is the envy of the world, which many others wish they had. We should look to improve it and ensure it keeps its well-earned status.”

As EHI reported earlier this week the next-stage review says integrated care organisations will be piloted bringing together health and social care professionals from a range of organisations – community services, hospitals, local authorities and others.

‘Our vision for Primary and Community Care' expands on this saying “These pilots will test a range of innovative approaches for transforming patient services… we will pilot how primary and community clinicians can work in a more integrated way with local hospitals to provide seamless care and high-quality health outcomes.”

The DH’s national director for primary care, Professor David Colin-Thomé, told a press conference this morning: “The integrated pilots will be fundamental to linking primary care services with organisations such as local authorities and acute hospitals and providing patients with the best joined-up care possible in a simple, seamless approach.”

A new ministerial-led group will be formed to identify how best to support the organisations who wish to go further in integrating health and social care.

Links

Our Vision for Primary and Community Care

Joe Fernandez

Reader's Comments

Good grief

03 Jul 08 20:07

We are as yet struggling to achieve a position where we can identify who has looked at a record - witness reports from Derriford recently. Surely this is like taking up the 100m sprint while we are still in nappies. I cannot see that the broad church of clinical staff could support this let alone the increased potential for 'leaks' and the consequences in respect of killing patient confidence.

How many more?

03 Jul 08 20:07

So how many more people will get access to our centrally held medical records? I really think the Department of Health should tell us before we give permission to upload our records. This is just what many people feared would happen.

Project creep ..........

04 Jul 08 08:07

and this is why I have taken the decision NOT to have my details uploaded onto the National Spine. Project creep has started, I have already heard a senior police officer state he would like to gain access to health records as a matter of course. What next? insurance companies? Drug companies? etc. etc. etc!!

Practice what you Preach!

max.lock@live.co.uk

04 Jul 08 09:07

Computer Records should be limited to the number of persons required to provide healthcare to the patient. Come on what happened to Calidicott?

All I have to say on this is:- Ensure there is an audit trail of all the users accessing my records, because I will want to know why they are being accessed when I have no requirement for healthcare?

http://www.nhscarerecords.nhs.uk/your-confidentiality

More people

04 Jul 08 10:07

to lose your data !

This will be another reason to keep tight ownership of your prcioaus clinical information, and NOT upload it to the spine.

Opt Out

04 Jul 08 11:07

Just another reason for all patients to opt out, and only opt in when they are absolutely confident about the security of their records, the ways in which their data will be used, and know (and be happy about) exactly who can access them (and that list is clearly growing day by day). This is mission creep par excellence.

It is exactly why the BMA have always called for explicit consent before uploading any data.

Confident in this Government?

04 Jul 08 11:07

“Britain’s primary care system is the envy of the world,..."

So lets fiddle about with it until it is broken.

Timing is everything - or not!

04 Jul 08 11:07

As someone doing their best to explain and prepare for the implementation of the Summary Care Record, I sometimes get bemused at the way that the CfH juggernaut thunders on without recognising the legitimate concerns - and managing the illegitimate ones!

Prof Greenhalgh has identified several fundamental areas of concern about the SCR programme and what's happened in the pilots. She's called for reflection and reviews of what's proposed. CfH said "fair enough", but then what...?

... post-Greenhalgh requests to PCTs to prepare their plans for SCR implementation and national proposals significantly to extend the 'reach' of the SCR.

From a PR point of view if nothing else, wouldn't it have been a good idea to take stock of Greenhalgh and publish what, if anything, is going to be done about the recommendations BEFORE seemingly proceeding as if Greenhalgh doesn't exist?

There has been a lot of disinformation about the SCR, but CfH really do themselves no favours with this seemingly "press on regardless" approach.

Re: Confident in this government

04 Jul 08 13:07

At the moment we live in a (relatively) benign liberal democracy. After peak oil, global warming, resource wars - all the things the harbingers of doom tell us about - who knows? The ill-uses to which national databases of personal information could be turned hardly bear thinking about.

But why?

04 Jul 08 13:07

I can see absolutely no point in this. I have been in meetings with the department where it was made explicitly clear by local oerganisations that, regardless of the consent issues, this is the wrong way to share information. The information in the summary (emphasis on summary) care record will be of no value what so ever to social services. They will need specific parts of detailed records such as assessments to support shared care, based on local requirements for care models and local information exchange protocols which will include patient/client consent. Why are they picking this fight? Because they have been picked up on the fact that they have completely ignored Social Services to date and this is a quick fix, tick box answer which will be a benefit to no one other than the comms team at CfH

The inevitable next step

04 Jul 08 14:07

It has been clear from the outset that the CRS was little to do with patient care, but all about creating a database which the state could use for its own purposes - after all why else is it so lavishly funded ? No doubt the "wider range of groups", which will be allowed to access the data, will include civil servants, local authorities and politicians who wish to have means of exerting pressure to force us to act in the ways they deem suitable. Opting out of the CRS is the only sensible way forward.

Summary or Detailed?

04 Jul 08 16:07

"The report says: “To support more integrated care, we will review the scope of access to NHS Care Records Service to embrace a fuller range of organisations that provide care to NHS patients, including social care, voluntary and private sector organisations and pharmacy, dental and optical services." I agree with one of the previous comments - the Summary record would be of very little use - but nor would the Detailed Care Record if information relevant to the organisation was not entered systematically - just in case! Seeing the problems already identified in shared records, I cannot see that giving even more people and organisations access - and presumably allowing them to enter information - could do anything to help good patient care and it would risk destroying any remaining ideas that the **patients** have any business witholding their confidential information from any social worker who wants to see it. Do you suppose they haven't considered the implications of their ideas?

Confusion of information and knowledge

04 Jul 08 19:07

I am really concerned over this scope creep, even though it only appears to be the summary record. My point is that information can only be assembled into knowledge if the reader has been trained in and experience of, content meaning and interpretation. I wonder whether the police officer accessing the record will more or less likely to shoot the supposed criminal if he knows they have a mental illness? If the detained criminal has no evidence of diabetes doesn't mean that he/she isn't developing it in the cells where they appear to be suffering from intoxication. If the policeman is concerned over the health status of a detainee the police doctor should be called and not be delayed by the law interpretation of the record. I really wonder why such people - including social care should have this information - and it really worries me as to what use their untrained (medical) minds will make of it all! This aspect of the CRS must be challenged.

An interesting broken link

nhstechie@btinternet.com

04 Jul 08 23:07

I tried to access the full text of the original document to check whether the suggestion was limited to CfH systems or if it included local NHS systems and opening up access to Social Services systems and hit the following message

Error page We are sorry but the page you are looking for cannot be found. It may have been removed, had its name changed or be temporarily unavailable.

Is this a U turn I see before me?

How will it be done?

stressfreedave@hotmail.com

06 Jul 08 14:07

Although I am mostly against the national system I do think some things about it can be good depending on how it is done. If the new uses of data are to go ahead it should be on a push system rather than store and pull. I do not see a problem IF the only way the patient data is pushed to others, such as social services, if it is done by request of the patient but bassed on the Goverments past and CfH acttitude towrads patient confientality I doubt patients will be given much choice or they will be led to think that saying no will cause significant harm.

As for all those woh think people like me are paraniod and scare mongering, I hate to say we told you so, but.......

link

joe@e-health-media.com

07 Jul 08 09:07

The link has slightly changed from the one we posted to:

http://tinyurl.com/5bqxdb

If you can't manage RBAC for medical students, what about the voluntary sector?

maryhawking@tigers.demon.co.uk

07 Jul 08 10:07

A lot of the security around the NCR service depends on smart cards and RBACs. I am told it has been impossible to allow medical students to look at PACS because of problems with issuing them with smart cards when they are on short placements at different Trusts. How would you issue smart cards and establish roles for the voluntary sector and social services? Assuming, that is, that RBAC is not about to be phased out...

So - the message is we should not share information

07 Jul 08 22:07

Fact - day in, day out mistakes are made in the care of a patient or client because information is not available or shared. In the minority of case - this causes harm including death.

If this is false - end the CRS, do not talk about sharing information with other agencies, we can all build nice little information silos and not deal with or work through the complexities that common or shared information systems bring.

If the statement is true - then perhaps we all need to work to find a way of better sharing information, that maximises the benefit of shared access and minimises the risk of inappropriate access - rather than fall into what seems like ranting.

Personally - you are all talking about what I consider to be my data - which does not belong to a hospital, a GP or any other person involved in my care - it is my data. I don't want rants or scaremongering - I want facts to help inform my choice about who I share my data with. If I am unable to express my choice - I am happy to place the decision on what information should be accessed to the care professional and to record why.

Is it the concept of data sharing that is being objected to here - or something else - because I plain can't uderstand the logic or thinking behind many comments.

Re: So the message is ...

08 Jul 08 12:07

Evidence of widespread harm through lack of information is - at best - anecdotal. As far as I know, the coroners' courts aren't full of cases where mishaps due to lack of information have contributed to the patient's death.

And evidence that the CRS proposal will support the sharing of USEFUL information is even less robust.

Care or health

08 Jul 08 12:07

I would like those involved in my care to be able to work together in my support, not independently. This means them having relevant information, which needs restricting to the team involved in my care - the purpose of legitimate relationships, a common standard of some differing care organisations. Since I will have decided which agencies are involved, I would expect them to communicate effectively, and probably have shared records in an electronic age. I would assume that the data protection act and Caldecott protection would ensure that such information was used for the purpose of my care. Yes I am idealistic, and I am not convinced about centralisation of development (standards may be better), but one day I will need co-ordinated care, and it is not just about my health. Unfortunately I have had poor experience in my family about failures of communication.

So - the message is we should not share information......

08 Jul 08 15:07

The message is that I should be able to decide and control the use of my HEALTH data and track it's usage in the very rare cases where it is not directly under my control.

To let policy makers, police, the King of Siam access to my data without my consent is simply WRONG and not in line with the privacy imperatives of a liberal democracy.

If you're happy to let anybody look at your file then that's your decision and you're entitled to it. Don't make my decision for me. That's my right!

re difference between Information and Knowledge

isabel.robertson@ntlworld.com

08 Jul 08 19:07

Although i work in Scotland the issues are the same. The ideology of all this talk re sharing information is fine in theory, but in practice if you do not have properly trained and knowledgable staff the system will always be open to mistakes. I have a background both in Medical Records and in Information and can say from experience this is a dangerous road to go down. You have scenarios where although trained within Medical Records doesn't mean you understand what you are looking at because you have no clinical qualifications and from an Information point of view also, if you have no knowledge how can you decide if the information you are sharing is meaningful or indeed correct. A lot of reports currently being used to submit information are way off beam. There are too many people making decisions on the routes to take that have no idea of the complexities relating to health care. Everyone involved needs to tread very carefully. Just because someone writes something doesn't mean it is accurately documented never mind interpreted.

the wicked questions..

maryhawking@tigers.demon.co.uk

08 Jul 08 22:07

Calm down! there are different issues here. I don't think anyone is against sharing relevant information with patient consent: the problem is what is relevant, and how do you ensure that information sharing is organised to prevent promiscuous sharing of information irrelevant to the needs of the carer/organisation involved, as well as making sure that the individuals outside the main NHS can be identified and have a role that needs that information. If you construct an integrated care plan for Frank, (an elderly diabetic amputee in a wheelchair, lives alone with his dog) there are a lot of issues which need to be included (like emergency plans for dog) which will not be in the medical record. Looking at access to patient information: in the NHS it is controlled by smartcards and RBAC: is it the general feeling that NHS staff access needs these controls but social services and voluntary organisations do not? Look at the *implications* before ranting. I'm a GP. Patients have a right to see their records (Access to Medical Information Act) and share it with whomsoever they please. This is about sharing in other circumstances..

RE: Coroners courts

nhsperson@yahoo.co.uk

09 Jul 08 09:07

I struggle to understand how you cannot be aware of the number of real cases where Coroners do site lack of information sharing as being a major issue - many of which hit the press.

I also suspect that every day in most hospitals that some adverse incident occurs that causes harm through lack of acccess to information know elsewhere in the NHS - alergic reaction, drug interaction - basic stuff. I certainly get to know about a proportion or these where I work, many of which are dealt with - the occasional one that lead to significant harm or death.

Companies customers verses carers and patients

daryl.mullen@nhs.net

09 Jul 08 21:07

"Companies succeed when they seek out ever more sophisticated ways of understanding their customers, listening and responding to their views. GP practices and other primary and community care teams should do the same" So there we have it GPs are to be like companies (presumably motivated by their shareholders wants) and patients are to be customers -cash cows to be milked. It makes you realise how far the commercialisation of the DoH has gone. Most doctors wince when they read such stuff.

Re: Re: Coroners' Courts

10 Jul 08 07:07

Perhaps I read the wrong newspapers but - in my experience - identification of lack of information as a causal factor in deaths is not widely reported. However, I'm aware of lots of anecdotes as well as some hype from the proponents of the costly CRS programme.

The main concern, though, is that there simply isn't the evidence that what is being offered will support the sharing of useful information that might solve this hypothetical widespread mortality problem (were it to exist).

Mary - Post 23

10 Jul 08 11:07

"Patients have a right to see their records (Access to Medical Information Act) and share it with whomsoever they please. This is about sharing in other circumstances.."

Actually, it's the Data Protection Act 1998. I believe the legislation you are referring to is the Access to Medical Reports Act 1988 which allows a patient to see a report before it is sent (e.g. to an Occupational Health Department or Insurance Company) and to discuss and or comment on it. It also gives them the right to decline permission for that report to be delivered. The Report must be held for six months after delivery in case the data subject wishes to view it "post delivery".

Just thought I'd clear that up ............ sorry for being anal

:-)

re: Mary - Post 23

glen.griffiths@interactivhealth.co.uk

10 Jul 08 14:07

No need to be sorry I'm sure - everyone is just trying to inform each other but I think you'll find Dr Hawking is referring to the Access to Medical Records Act 1990.

"An Act to establish a right of access to health records by the individuals to whom they relate and other persons; to provide for the correction of inaccurate health records and for the avoidance of certain contractual obligations; and for connected purposes."

on the statute book since 13th July 1990

hope this helps

A legal eagle writes

10 Jul 08 16:07

If would assist the court m'lud ... The Access to Health Records Act 1990 pertained to manual records because these were not covered under the original (1984) Data Protection Act. It was superceded by the new Data Protection Act 1998 which extended its reach to manual records. The only provisions of the Access .... Act still in force are those that relate to acccess to the records of the deceased. The right of access to their records for the living is provided by the DPA.

The defence rests.

Timely policy

11 Jul 08 18:07

passed by the BMA at the ARM on Thursday. Not a minute too soon it seems.

that "there should be a national publicity campaign to warn patients of the dangers of consenting to their records being held on a national database."