Nothing about me without me?....

Christmas over, 'sales' in full swing, New Year rushing towards us, and the prospect of a damp and bleak January ahead...

Bah humbug!

Thankfully the end of the world proved another false alarm and no reprieve from a full surgery, but NHS services in Primary Care we will see a gathering pace towards the changes that accompany Clinically Led Commissioning under the NHS Commissioning Board.
The end of March will also see the formal end of 'Connecting for Health', and reading many commentaries you could easily surmise that few will mourn the passing. But hidden under headlines of inefficiency and misguided strategy are considerable nuggets of success. Of course I am biased - but most of the successful elements had significant clinical influence and 'buy-in' leading to useful and USED developments. I hope this lesson is retained in future structures and plans.

Only two predictions for 2013 in the field of Primary Care informatics:

1) Patient 'on-line' interaction with primary care will increase significantly, with politicians claiming vindication of patient power and clinicians claiming a victory for common sense and professional responsiveness, but primary care services remaining under ever increasing strain to deal with basic reactive healthcare, rising demand and expectation, let alone aspirations for proactive and preventative work.

2) 'Open Data' as an agenda for change using the immense and hitherto lightly utilised primary care database will become a heated high profile debate, polarising opinion and distracting from worthy aims. As a clinician I am struck by the challenge from the single 'headline' within the 'Power of Information' documentation - 'Nothing about me without me'. In terms of individual access to our own GP records this is translated into a right of easy on-line access to our electronic records, but what is the converse implication for central collation and use of 'our' data for secondary purposes as demanded by the 'Patients and Information' directorate of NHS CB? In particular what restrictions do I as a citizen and patient want to see applied to MY identifiable health data?


I do not have the answers to the last question, but add the observation that electronic clinical records usually reflect a private and very personal patient - carer relationship that is appropriate to share  between those parties, but indiscriminate wider sharing (and in particular publication) carries significant risks for this fundamental relationship of trust.

So more interesting times ahead

Happy New Year!

Peter S.

The Good, the Bad, and the Different

Lots on my plate in the last few weeks, so I have taken my eye off Records Access at the surgery. And when you take your eye off - things happen!

My surgery has undergone a system migration this week - never an easy transition, and the first time for us in 19 years. As part of the process there is disruption to Patient Access. Neither of my test patients now have the ability access to Medical Records - I probably need a training refresher here! Not heard if this issue is the same for my patients - but I do expect it to be the same.

The patient interface has also undergone a change - and the Patient Access ID number has changed to a new (longer) one including a practice identifier code. Will probably turn out to be easier, but NOT a memorable number - so patients will have to write it down (as I do), perhaps making it a bit less secure.

On the bright side there is an opportunity to enter a number of security questions - I am assuming these are needed for password re-set remotely. That WILL be an improvement that I must check out!

And last irritation is that the patient information links are not currently working. The experience of enthusiasts and innovators in that patient support and educational information is vitally important to make use of the record. Must do better....

PS

Who will benefit most?

A big question with "Records Access", who stands to gain the most?

The patient, with or without a chronic illness?
The 'digital' surgery?
The affluent with modern technology and smartphones?
Advertisers and the IT industry?
Politicians claiming vindication?

No clear answer(s) at the moment.

Attending and contributing to an evening talk in Lewisham on Record Access sponsored by The Health Foundation has contributed to my knowledge and made me consider the potential to support citizens with diabetes more effectively. It is always good to have a mixed audience of patients, health care providers and local managers, polarisation of opinion is reversed, and some real progress can be made in awareness of mutual opportunity. The 'myRecord' project in this locality will be well worth watching as a locally owned and driven initiative to use technology to support care better.
Perhaps those present have shown/reminded me that the technology use is not just to improve care, rather to enable and encourage better SELF-care.

My second 'lightbulb' moment around 'on-line' services for patients comes from consideration of how patients may get access to test results, using new technology. A much repeated and topical government and policy aspiration.
For me, there are still significant barriers for many of the population to bother to search records and review results - it is likely to be a minority activity EVEN with enthusiasts. But to mis-quote many historical figures - perhaps there is 'a third way'!

My inspiration is to use technology to assist the current process, not to invent new pathways or generate more work for General Practice. We already have swift return of results through electronic laboratory links, and in most surgeries these are rapidly reviewed, commented upon, actioned where necessary, then filed into GP records. There are already very efficient mechanisms to confirm results belong to the correct patients, despite the 'distrust' of some senior officials, and trusted processes to deal with important results! What is missing is a way to convey the result and clinical interpretation/advice directly to the patient. Currently most GPs write, telephone or instruct patients to contact the surgery to check results - an inefficient process for all of us, patients particularly.
The solution? Immediate 'one button' option to copy the result AND the clinical advice/comment via the channel chosen by the patient - an SMS message to mobile phone or e-mail are equally possible. (US Blue Button' concept). And before there are too many complaints - we already pay for NHS mail and SMS text messages through N3. There are some issues around such a proposal - but all are simply soluble IF we have a will to do so. Perhaps such a solution makes getting test results and supportive advice a lot easier and quicker than the cry for 'full record access' can deliver? It could then easily extend to other 'bite-sized' bits of information - Immunisation status, hospital letters, consultation notes....

So lots to ponder - but a solution to message my patients securely would save me an hour or two a week.... and probably more than that for my patients.

Are you paying attention GP system suppliers?

Peter S.

Hearts & Minds

I have just returned from a GP system user groups conference, filled with enthusiasm, new ideas and ambition - that is what these events are about. But through the buzz of new announcements and promises there were three distinct 'threads' that relate to 'Records Access', and my small scale experiment in opening records.

The first, and probably the most important is that the general professional resistance to this proposal has significantly reduced, with a shift to apathy or even interest in how it may be done! I suspect the clear policy message in the Information Strategy has had an impact - but there were still practical concerns voiced, and scepticism as to the true demand from patients.

The second was a clear recognition by the company that 'Information' is the clear thrust of their future strategy. Making the record available when, and where needed, information to support clinicians, practices and organisations, and very clearly integrated with high quality information for patient use.

The third more practical promise was of forthcoming improvements to the system functionality, enabling easier administration and delivery by practices, and easier patient use.

All three of these are needed to win the 'hearts & minds' of clinicians, patients and organisations in order to deliver so much more than the simple transaction and viewing services we have now. It cannot be long before all the providers of IT systems to Health & Social care services start to take similar steps - or are required to follow. This is not a race, but an exciting time of opportunity, leaning and innovation! I believe the NHS has the spirit and ideas to innovate using technology, and in partnership with industry - I just hope it is given the freedom rather than constrained by targets and red-tape.

Peter S.

Control....

In the British Medical Journal this week, the lead theme is 'patient control of records', with an editorial comment, main article and personal view.

I have spent a significant amount of time pondering the meaning of 'control'. There does seem to be a wide variety of views and, surprise surprise, no easy answer.

For the most determined advocates, control has been explained in terms of patients 'holding or posessing' the records, determining who and and when the records are accessed and being the central 'hub' for all who request access. The most negative sceptics articulate a very different vision, where the existing organisational medical records are maintained and shared for patient view only with strict technical controls and information governance procedures, in order to ensure confidentiality.

Perhaps most are missing the point - what is it we as patients and 'citizens' expect as control?

For very many of us this elusive ‘control’ is not ‘posession or ownership’ of the record or about asserting our ‘rights’ to  see all the notes about us, but rather a ‘confidence’ and trust in those who care for us – confirmed through the routine ability to see and understand plans and records, should we wish to do so. Most of this is focused on the relationship between clinician and patient and ‘shared decision making’ over all aspects of health and care.

As a clinican in a professional relationship with my patients, I want them to feel comfortable, informed and valued in all our contacts – in other words, ‘in-control’. I cannot always make this happen, but I feel that control is NOT about asserting rights, but rather having the confidence that they are being respected.

Peter S

Packing for holiday? What have you forgotten?

If, like me, you are a 'mere mortal' and did not pursue athletics to an International standard, now is the time to venture abroad for sunshine.

So we will pack clothes for all conditions, enough suncream to cover a medium sized boat, 12 pairs of shoes (ladies), a small library and a bottle opener/cork-screw. If well prepared we will pack our medication and a few days spare, insect repellant and a few plasters. We will splash out on an annual travel insurance policy and even find our E111 at the bottom of the 'swimwear' drawer.

So what have we forgotten? Well how many people will 'pack' their medical record to take with them? I suspect very few, at present, but things may be changing. On a smart-phone, tablet or laptop it is very easy to travel with a copy of our medical record - if made available by the GP surgery. We will have to protect it with security passwords (and this requires discipline for most of us) but it could come in useful after the yearly cycle hire disaster, or attempting a spectacular beach volley-ball recovery.

Perhaps I am over ambitious - but if we bother with travel insurance, is it equally important to take our information to support safe care in an emergency when away from home?

Peter S.

Practical Matters.....

Just setting up 'Records Access' is not a complicated task - but continuing to manage and administer it is proving to be!

Despite a lack of 'overwhelming demand' there is the on-going challenge of basic administration. As soon as anyone is active with a surgery 'transaction' facility there is the burden of managing forgotten passwords, and even worse - 'technical questions' that relate more to internet problems and the layers of security.

For a practice like mine, this generates more work for the 'team', and in my case - for myself as the key system administrator and manager. But I am increasingly nervous that this will rapidly become unmanageable as the pool of patients with RA slowly grows.  I cannot be available daily to address individual questions, or to provide an evening and weekend service when away from the surgery building. I certainly am NOT the one to ask computer and software questions of - or to provide an informal 'support-line'.

Anecdotal comments from other surgeries and enthusiasts echo this concern. A whole new 'system' of working and support is required - and for such aspirations to become widespread in General Practice, patients, clinicians and surgeries are going to need a whole new level of support and back-up - or we let patients down. It is pretty obvious that there are resource implications in the pipeline.

Doing it right is a significant and enduring challenge......

Peter S.