Access to your Medical records online – It’s hard work for practices, even to do the right thing….

It’s hard enough dealing with illness, worry and the pressure that results from this, without having a system which seems to be hindering rather than helping.  I’ve been touched by an event where someone who cares for their son (he has a life changing, long term illness) is despairing because of the struggle to get access to his medical records to make sure he is cared for safely and receives the right medical treatment for his conditions.

I thought I would try and explain why some practices have not prioritised this area of work.  That’s not to excuse them but more to give context to the problems.  I hope this provides a broader understanding of the challenges so that if you too are struggling to get access to your records and need to have a conversation either with your practice or local CCG, this is easier because you know some of the background details.

 I work as a Practice manager in West Cumbria and I’m also working across Lancashire and South Cumbria to spread digital working so Online Records Access is a bit of a passion of mine – largely inspired by the work of Ingrid Brindle and Dr Amir Hannan.

 

Haughton Thornley Medical Centre had a specific reason to start the records sharing  – they had to rebuild trust after Shipman.

Dr Hannan describes this as a Partnership of Trust and often a critical event like this triggers a huge swing in the opposite direction, hence their policy for openness and transparency.  He is driven by this almost like a crusade and has been doing this for 13 years.

Unfortunately, the majority of GPs do not have either his reason or understanding of the benefits of providing full records access.

This post isn’t to debate the pros and cons, more to explain why it’s not as easy as presented.   Most practices have only started in the last 2 years which have been an increasingly pressured time in General practice due to dwindling resources and increased demand.  Our practice started to provide detailed online records access in 2015 following an evening training session with our patient group, staff and with Dr Hannan and yet according to the lastest NHS statistics, we still only have 33% of records access.  I have been unable to spread this work across the practices in my area of Cumbria largely due to the chicken and egg situation; ‘patients don’t ask, so we don’t have to provide’ vs ‘patients don’t know what to ask for, or when they do ask, its too hard to do’ for the practice.   I also support our local group of PPGs and help to raise awareness about the benefits of records access and I’m often frowned at by my PM colleagues, who are finding it hard enough to do the day job with multiple complex priorities and change.

We are dealing with a society where increased litigation is creating more fear in clinicians than ever before, ramped up by risk aversion and caution in the medical indemnity and professional bodies such as RCGP

 

The guidelines we have to follow and assurances we have to give to regulators (CQC)  are confusing and completely at odds with patient experience and NHS policy directive ie our GMS contract See Section 3.

Pulse, like many other organisations provide both detailed and summary guidelines to address the new GDPR regulations but interpretation is varied across practices, some  provide the absolute contract minimum records access, others have increased their provision rather than deal with Subject Access Requests.i

I know there are really good General Practices, with Outstanding recommendations from CQC, who still only have 0.27% for their Detailed Care Record Access.

As a member of a patient group, I have asked my practice to enable some of this functionality, but have stopped asking as I’m aware that I could be perceived as a nuisance and that this may affect our relationship.  So I appreciate the experience from both sides of the divide.

If you are interested to see how your local practice compare, here is the latest data  so you can find your CCG and practice and see where they benchmark.

Many of you will know that General practice income is reducing year on year and expenditure increasing.  The Independent contractor business model means that any additional unfunded work comes directly from the bottom line of GP Partners income.  If Partners have a choice to pay locums to keep the service going, rather than spend this on clinical and admin time to carry out the data checking required to ensure the records are accurate, readable, viewable and cleansed (I mean redacting any 3rd party information which is required by law), then they will spend their money on the locum every time so that patients get seen.  It’s a continual balancing act between providing access and shifting to new ways of working.

GDPR has increased this anxiety and whilst from a patient perspective, the regulation is a good thing i.e we should know what’s in our records, this has created a huge amount of work in practice.  Software to help carry out this process is available such as iGPR but at a cost to the Practice or the CCG and is only recently developed.  Initial feedback is good, but their earlier versions of their insurance reports were clunky so many practices were put off by this.

 

Think back to the days when your GP wrote in Lloyd George paper notes, probably in medical shorthand to describe what your symptoms were.  Many of these old records are illegible, some contain inappropriate comments as societal norms and subsequent language has changed.  These were always the ‘GPs notes’, not the patient’s – but now thats changed, even if the content in the notes is the same.

Each time a patient moves from one practice to another, your new GP then becomes the data controller for someone else’s data entries.  Would you be happy with this responsibility and be willing to share without checking the historical records?  Until recently, none of this was taught in Medical School and I suspect its still skipped over. Our practice teach medical students – this topic is always on our training schedule – even if the Student tells me they want to be a surgeon.

Roll forward to today when people are requesting 10-30 years of this history to be viewable and I think you can appreciate the workload to share this in a presentable way.

Another feature of GDPR (in addition to the increased workload and anxiety) is the removal of the ability to charge for the work.  Hence, some practices suggesting to all patients that online access is the answer and then realising the workload to tidy the records is no less onerous than printing them.  Yet Practices still have to put in place mechanisms to ensure that records are continually checked for external 3rd party content and protect this information from disclosure.

I’m not aware that NHSE have provided any direct resource linked to the volume of this work to practices since 2012, when they funded a Direct Enhanced service for online services for a short period.  This work is now incorporated as a GMS contract requirement for online services, with a ‘stretch target’ for further adoption.  The current figures mainly reflect use of transactional services (online appointments and medication requesting) to present the story of ‘14million users’, so this satisfies the DH & Secretary of State’s headlines of success, but provide little support in terms of detailed care records access.  NHSE Patient Online team have reorganised as the ‘Empower the Patient team’ and whilst offer presentations and promotional materials to support practices, they do not have any budget for deployment or direct training at a practice level.

 

CCGs are responsible for the Infrastructure to support General Practice in terms of IT and local Training capability and capacity varies from area to area, so unless the Practice team has some understanding of what the patient can see through the various record viewers, then they wont understand the consequences of scanning correspondence, without details being attached to the images.  Correspondence may have scanned historically before this became a priority, hence many online records have no valid descriptions on the attachments.  Practice priority is to get the correspondence into the records asap so that if a patient comes into the surgery, the clinician can view the letters or act on the information contained therein.  Bulk adding of correspondence is a common task, followed by summarising of ‘read coded’ information and if a patient has a large record, then often the GP2GP (thats the electronic system for transferring the electronic record) fails.  So someone has to painstakingly read every piece of correspondence to glean the pertinent details and manually code this information.   There are add on software products that can help, but stable infrastructure is required or else this adds further risk if documents cant be accessed by the clinician in the consulting room.

 

In our practice we have 3 years worth of scanned images from 2006-09 that are unable to be converted into a viewable format.  That was due to the scanning system configuration at the time and long before records access was even considered.  Our CCG paid for the remainder of our historical scanned images to be converted to a readable format.  Many practices have to fund this cost themselves.

As Ingrid Brindle regularly points out, complex patients or their carers often have the best knowledge of their history – she says ‘it’s their life’s work’ and patients can be a great support to help practices correct any inaccuracies.  Patients can help by highlighting all of the pertinent information and checking with their practice that this is:
A. Read coded
B. In a format that is shareable across the health organisations in their area
C. Visible through whatever records viewer a patient chooses to use.

The introduction of Snomed might make it easier for hospital coding to be automatically transferred into GP records but this has been in the pipeline for many years, although expected later this year.

Sorry this was a long post, but as you can hopefully see, this isn’t an easy or quick fix and it shouldn’t be left to individual practices to resolve.  NHS Digital seem to be focussing on front end entry to the NHS through apps and also single identity authentication to remove the need for multiple passwords and sign ins.  They are currently working with existing market providers like Evergreen Life and Patient Access for the records viewing element but its not clear yet how this will impact on records access at a practice level.

Alongside this, CCGs and clinical system/Electronic health record providers are focussing on large scale inter-organisation data sharing, but not direct sharing with the patients.   It will be interesting to see if the launch of the NHS app for accessing all services increases the requests from patients for records access online and how this will be resourced.