The Power of Information

The Government Information Strategy has been published, and comments and analysis started to circulate.

While the high level strategy attracts general support, it will be the detail of delivering the reality at the sharp end of the NHS where we all be ultimately judged. Will it make a difference to me as a patient or me as a health professional?

I very much hope so!

My lessons in providing access for patients at my surgery are changing my views about what I would like for myself and my family.

My wish list:

• Easy registration for on-line services
• Electronic booking and cancellation of appointments
• Checking and updating my address and contact details
• Order my repeat medications
• Appointment reminders (if I choose)
• See and print my test results and recommendation from my GP
• A simple 'routine' message service to show that I have seen results and recommendations
• See my future agreed test or review schedule
• See my current Summary Care Record
• See and check my GP summary as kept by the Practice
• See the latest hospital letters about me
• See where I am in 'the system' when referred to a specialist

I would like the reminders and appointment functions to work on a standard 'Smart-phone' - the others can be from a PC or tablet device.

I have though rather more about other information such as older letter, the full record, an audit trail of who has seen my record, e-consultations etc, but these are not currently things high on my priority list. A significant reason is that I trust the GP surgery that looks after me, and the clinicians and staff who work there. They are not perfect, but I am not intending to use 'Records Access' to check up on them, rather to make their job of looking after me easier, and reminding me what I need to do to look after myself and stay healthy - from the convenience of my desktop or mobile phone, 24/7.

Perhaps I will change my mind when I get a regular reminders to get off the computer, to walk a bit more, to reduce my intake of wine and to attend for my scheduled 'health-check'....

Peter S.

Feedback from patients starts...

Last week marked another milestone in the experience of Records Access at my surgery, direct feedback from a couple of my patients.

While I have had copies of my initial survey returned, this is the first time I have had the chance to learn directly who is using the facility, and a bit about their experience.

One patient had clearly been having problems accessing the record, and then later been blocked altogether with password problems requiring a re-set. While this is only a technical issue, it is perhaps a warning that this may become a frequent event. For patients who only look at part of the records occasionally, or who rarely need to book appointments or request medication, forgotten passwords will become a barrier to use. For the practice we are very reluctant to take on additional work with re-setting, particularly when there appear to be efficient and safe mechanisms deployed in the commercial world. Clearly an area where we need to do better to make access smoother.

A second patient had far more success, and had been looking through the record with interest. The questions brought about the presentation of the record from a patient perspective has alerted me to some of the anomalies that I take for granted. This includes the absence of values when they are low or high and 'out of the laboratory range', and instead they arrive from the laboratory as text. Then they no longer appear as a 'value' - which can be very confusing for a patient who knows they had a test on a specific date, but cannot see a result! Also very useful was the observation that a previous significant diagnosis was not listed in the significant problems section of the record. Checking back revealed it was noted in the past record, but not correctly flagged as a 'significant event' due to subsequent improvements and standardisation of our 'summarisation' arrangements. This is now corrected, and gives me an immediate example of where a record summary, jointly managed by patient and clinician, is more accurate and relevant for future care.

So the message of the week - the GP record summary holds important and useful information to support the safe care of the patient, but its value and accuracy is increased when jointly managed by the GP & patient in partnership.

Peter S.

Could do SO MUCH BETTER!

Fascinating statistics available on how my practice population currently use electronic access, and the picture nationally from the EMIS system provider.

At my surgery in March 8 people accessed their medical records electronically, with 17 viewings in total between them. We had 28 new people sign up for access to basic transaction services. 198 appointments booked and 69 cancelled in addition to 180 patients requesting repeat medication. Not exceptional - but a steady flow of activity.

Now if that activity were translated into all GP practices in England (adjusting for list size) every month there could easily be:
1 million appointments booked on-line
356,000 appointments cancelled on-line
930,000 repeat medication requests on-line

And a lot of the activity from patients using on-line services IS during the working day - so surgery staff can attend to other priority patient care and quality service related work.

Below is a graph that shows the EMIS average on-line access activity hour by hour.



More than 70% of the activity is during the routine working hours - very similar to my surgery experience.

So although I am exploring access to GP records electronically, it would seem that any effort to encourage more use of the basic transaction services at my surgery - or any others, is a clear winner as a priority! And when we take the next steps with FAR MORE interested on-line customers?

Peter S.

Shared ambition - but double standards....

In between the joys and pain of routine General Practice I have been spending rather more time on the work 'behind the scenes' with the sharing of clinical information to benefit clinical care.

Whatever the care setting, whoever the clinician and (almost) whoever the citizen or patient, all seem to agree that better sharing of information is essential to improve care and efficiency. We all claim to share this ambition.

In our real world however it is all too easy to sit back and wait in vain for leadership and directives to 'share' informations, drop our barriers and 'open up' the data. And here I must point to the lessons of the last few years. When there are central/national efforts to begin sharing, create opportunity and aspire to a new way of working WE ALL have a tendency to be defensive. We express concern over the lack of ambition - or the excessive scope, we argue over complex security processes - or the difficulty of access, we demand detailed information governance scrutiny - but trust Tesco with intimate details. So though an unpopular message, I believe all of us are at fault for the painfully slow progress of some National projects with amazing potential. The Summary Care Record best exemplifies this problem.

But amid the public and sometimes vitriolic criticism of perceived 'top-down' initiatives, we are witnessing significant progress with local schemes. Sometimes in small or discrete communities, sometimes based around organisations and sometimes around IT systems. One of the common features linking success is 'local ownership', with understanding and drive for local benefit. Within such local schemes it is possible to take control of the sharing agenda, and choose to blur the rules and guidance on security, governance and consent, for a clear and shared aim to improve care and safety. And this IS reaping local benefit - for patients and communities.

So what does this mean for National initiatives? Well, I hope that we can all learn from local success, without developing new and isolated islands of sharing with no ambition to engage with a wider community. 'I've solved my problem' is not a strategy for success in a National Health Service.

I hope that the 'Information Governance Review' under Dame Fiona Caldicott will help to re-establish a level playing field for information governance, that we can use what is left of the shrinking National Informatics resource to share innovative practice. I also still hope that clinicians and commissioners will re-look at National products NOT as a problem to be tolerated, but as an opportunity to use as part of a bespoke 'local solution' to information sharing - between organisations and with citizens.

And for citizens and patients viewing their own records? To learn quickly how to make best use of this opportunity, not telling citizens what to do, but responding to their suggestions, the requests for interaction and a new level of trust and shared control. The 'cutting-edge' enthusiasts, the reluctant followers and the 'sceptical laggards' all have a role to play. Access to GP records is a tiny element in the change we are all witnessing, that we cannot control, and that threatens the 'comfort zone' of care providers like myself. I think I am learning that although we share ambition this will not be a comfortable ride!

Peter S.

LIES - Damm lies & STATISTICS!

Yes - I know - statistics can prove or disprove anything, yet we (?) in the scientific and medical community are constantly pouring over and analysing them to seek out 'evidence' of where we do well, and where we need to improve.

SO for me another confession - the result of running an audit of activity 'on-line' at my surgery in the last year. The 'audit tool' we are provided with is very basic, producing a single massive file - too big to fit into excel! So first note to self (and suppliers):

1)  Provide us some basic tools to report on activity - please.

So for the last year from April 2011 to March 2012:

Activity	Count
Repeat Medication Items ordered	5135
Stop Access	5
Make appointment	2254
Log-in	9141
File Change of Address	106
Failed log-on	799
Change Address	109
Cancel Change Address requests	1
Cancel Appointment	711
Archive change of Address	3
	18264

It appears I vastly under assessed the number of patients who use our 'on-line' facility, based on information from another part of my surgery IT system reporting (confusing!!!). We have had 808 individual patients access the surgery system at least once in the last year, which means almost 9% of my surgery list.
So, second note:

2)  Ensure reporting 'on-line' activity is consistent in all modules of IT system.

Before I sit back in bask in the 'warm-glow' of self satisfaction I have to point out there are some wide variations in usage by individuals - evident only by detailed filtering and sorting of the combined report (almost beyond the skill of an ageing, non-technical GP).
The range of 'on-line' usage is from 1 to 857 log-ins per year! There are a number of 'high users' who access our system 100-175 times in a year - using many of the transactional options, however a single user stands out as 'atypical' with 857 successful log-ins in the year and an additional 13 failed attempts. Maximum number of log-ins for that individual is 28 in one day.
Clearly there are other reasons and issues that need addressing separately for this individual, and questions about the benefits and disadvantages for them, the surgery and the wider population and care services.
So third and fourth note (to self and future guidance):

3)  What will be the 'accepted' reasons for withdrawal of Records Access privileges, and the mechanism for appeal?
4)  Can we  have individual reports on usage from the clinical system?

SO totting up the activity I come to an average of 11.3 log-ins per year for active users (or 10.3 discounting our practice enthusiast). So WHEN patients are registered for transactional activity it IS well used - and I am confident it provides a valued additional service AND saves time and money for my surgery.

Last (wishful) note:

5)  Please can I have working reports on patient access to the full GP records that I have enabled? How often are they viewed, and what in particular are patients looking at?

Peter S

21 and counting....

It may not be a landmark in terms of activity, but we have 21 patient requesting access to medical records at the surgery so far. This may be around 0.23% of my practice list, but it is still considerably more than most practices in England. Leaflets advertising the service are prominently place on the main reception desk, and disappear regularly!

Now perhaps where this gets interesting is in comparison to the number of patients who are active users of  'on-line' transactions. Contrary to my previous publications and claims, it turns out we only have 272 active users out of a practice list of more than 9,000. This is despite ACTIVE encouragement, and offering leaflets about on-line access to all who newly register at the surgery, So:

• 3% of my practice list are enabled users of on-line service
• 7.7% of those registered for 'transactional services' have asked for full Records Access

Perhaps the figures are starting to make some sense?

If I had 25% of my surgery list registered for 'transactional services' then I could expect around 170 people asking for Records Access - if all the trends continue.

SO - priority of work at the surgery is to get as many people as possible registered for, and using, transactional services. RA may well follow-on naturally. This is likely to bring the most immediate benefit for patients in terms of convenience and 24 hour access to appointment booking and medication requesting, AND for the surgery in terms of efficiency and reducing front-desk and telephone contacts.

The other question to address is how difficult do patients find it to register for simple transactional services, let alone full records access. I wonder if the RCGP, BMA and System Suppliers can come up with ways to make this easier - and if the Information Governance review being led by Dame Fiona Caldicott will give any direction to remove barriers?

Peter S

Technically challenged.......

Well the leaflets continue to disappear from my waiting room - so some of my customers clearly find the subject of records access interesting!

But my next challenge is far more technical. Before we can reliably enable our patients to view their own records we have to have an efficient, and reliable, process to register them. And here we have challenges. Having established a reliable process to register patients for appointments and repeat medication, there are additional 'back-office' tasks to generate an additional password, set permission and text viewing dates. And after these are circulated to patients they have an additional password to remember, and to navigate through a brand new Practice Website.

Complicated? No-wonder at least one person has locked themselves out of On-Line access altogether! So we will be creating some understandable frustration for the enthusiastic patients before we are confident and reliable in managing this transition.

The software suppliers also have some work to do, to make management and administration of Records Access easy at the GP surgery end. They will also have to consider more useful reports on activity - so we can better understand when it is useful and what patients look at.

SO firmly on my wish list:

• Make it easier to administer
• Improve the reports
• Consider a 'tab' to show the current uploaded 'Summary Care Record'

You never know - it might get more popular with the practices...

Peter S.