Medication Repository Anyone?

I was writing this piece when I read Ian McNicoll’s stimulating blog piece “EastendEHRs? – Dr Leggs’ Diary”   Ian talks about community medication records, very much the theme of this piece.

It seems to me that a shared medication record is the single most useful thing that could be provided in any health community and that while such a service is not without it challenges it is eminently doable.

I also feel that working through what such a service would look like and how it might be delivered could help us clarify our understanding about a number of technical, clinical and governance issues that would have general applicability with regard to the sharing of other parts of records or record summaries.

In my mind a medication repository is a logical construct, that might be physically instantiated in many ways to provide a single authoritative source with regard to medication information for a particular patient I envisage that all applications that need to read or write medication data would operate against the repository, or a locally maintained cache of it, rather than managing their own medication record.

Ideally, the repository should contain details of all medication from all care setting including patients self-medication, but a useful start could be made with a more limited scope (say just GP, outpatient, community and hospital discharge medication.)

There are many potential architectures for a medication repository. I am not necessarily suggesting a single medication repository for a health community (although this might be the most practical solution), there could be many (in the extreme, one for each individual) and they don’t have to have exclusive geographical scope (patients would be free to choose from all available service providers) the important things are that there is a single authoritative source under shared governance, a means of discovering where this is for a particular patient and that all repositories support a common API so that any application can easily work with multiple repositories.

Building appropriate governance arrangements around medication repositories is perhaps the most significant challenge, but also a particularly interesting one that will allow us to explore approaches in a constrained (and therefore manageable) scope that we can later apply to other aspects of the record.

Governance arrangements need to ensure that all those with rights to the information in the repository can be confident that their rights will be respected and protected for all time even in the event of the failure of a particular repository provider – I envisage some form of information escrow to achieve both of these things.

Governance arrangements also need to ensure that the provenance of information is secured, handle the allocation and transfer of clinical responsibility associated with information held in the repository. and the ongoing responsibility for management of a patients medication (changing cancelling adding medication.)

These governance issues illustrate the inseparability of the information and clinical governance issues, an inseparability which I believe applies much more broadly and is something not properly recognised in the implementation of existing systems.

Moving this idea forward requires some proof of concept work, which in turn requires someone willing to build an operate and experimental repository and a couple of application providers willing to work with it – ANY VOLUNTEERS.

Beyond the Hawking Horizon

The idea that a single shared electronic health record (SSEHR) operating over a wide geography serving many care settings and diverse professional groups is a good idea is one that has some currency in the NHS. However, evidence seems to be growing that this approach does not lead to more effective care and communication and brings new problems of it own.

Myself and colleagues in the British Computer Society Primary Health Care Group (PHCSG) have been struggling to untangle the issues that flow from SSEHR and have contributed to guidance on their use intended to help achieve a better balance between the benefits and problems they bring. However, after much debate I those of my colleagues involved in this work have concluded that the SSEHR is a fundamentally flawed idea and one that we should not pursue further.

As always with our debates we have struggled with the semantics of our discourse. What is a record?, what is an EHR?, what do we mean by a SSEHR? and what differentiates it from a EHR?. So first some definitions.; there are various terms in use for EHRs these have subtle differences in meaning that are not always agreed or understood; EHR, EMR, EPR, PHR and HER (the last created by the default auto-correct setting in MS Office) I’ve wasted too much of my life on these definitions so I am going to call them all ExRs and let others botanise about them.

So what then do I mean by an SSEHR. Sadly, applying common meaning to the name is misleading. It is Single, in that it is the main record of prime entry and reference for those that use it. (So it’s not a summary record or a consolidated record created from other records of prime entry). It’s shared, but then with a few very limited exceptions all records are shared (indeed the facilitation of sharing is one of a records main purposes) but to meet our definition of an SSEHR it has to be shared widely both geographically and functionally, certainly beyond a single organisation or care setting and across also across diverse users. It is this degree of sharing that differentiates an SSEHR from other ExRs and which is the root of it problems.

SSEHRs are shared beyond a single domain of trust, beyond a single homogenous record culture and on too broad a scope for a single set of governance arrangements to be meaningfully applied and it is this broad scope of use in at the heart of the problems with the SSEHR. The first set of issues are around issues of data security, privacy and consent ,the second around record quality and the third around innovation and choice The first gets the most attention but while important I think these problems don’t represent the biggest challenge for the SSEHR, so In this blog piece I’m going to concentrate of the second set of problems around record quality. I shall come back to the other two sets of issues in a latter blog.

I’ll pick-up on a more detailed discussion on the definition of record quality and the purposes of ExRs another time, but for now lets just say that quality is about fitness for purpose and that ExR have a wide range of purposes. Even within a single organisation with a shared record culture and governance framework these purposes are not fully compatible and the record needs to be a compromise between these purposes which reflects the weight given to each by the users of the record. As the scope of sharing increases the dissonance between the various purposes becomes greater and the extent to which all users understand the purposes of all other users reduces and we reach a point where the utility of sharing starts to fall as the scope of sharing increases, I call this the Hawking Horizon in acknowledgment of my friend and colleague Mary Hawking who is responsible for so much of the best thinking about this problem. Where the Hawking Horizon is is open to debate and it position can certainly be affected by the quality of systems design, governance arrangements and user training, but the Hawking Horizon is clearly closer than the boundaries of many SSEHRs we are attempting to implement today. Probably, to keep within the Hawking Horizon a record scope should not extend beyond a single service or domain of trust (i.e. a GP practice, hospital department or community service) and we should look to other mechanism to share and communicate over the Hawking Horizon (other types of shared record i.e vertical and horizontal summaries and purposeful clinical communication – More about these in a later blog).

What then are the practical problems that arise when we try and push the scope of a shared record beyond the Hawking Horizon? Firstly, we get conflicts of purpose with user recording information in ways fit for their purpose but actively damaging to the purposes of other users. Some example reported to the PHCSG include:

• The recording of a rogue high blood pressure in an out of hours emergency of a patient whose blood pressure is otherwise normal undermining the QoF target for a GP
• The use diagnostic label “stroke” for every encounter between a patient and physiotherapists for rehabilitation treatment follow a single stroke distorting incidence data.
• The referral management centre who recorded a hysterectomy, as this was the reason for referral, which, if not spotted would have excluded the patient inappropriately from further cytology screening.

Secondly, we get irresolvable differences between users with no governance arrangements in place to resolve them. Again examples reported to PHCSG Include.

• The podiatrist who refused to remove a diagnosis of diabetes from a patient where the GP had biochemistry results which proved conclusively that the patient was not and untreated diabetic, even though she had a leg ulcer that the podiatrist reasonably considered to be a classic diabetic leg ulcer.

• The GP and social worker who could not agree on the diagnoses of bi-polar disorder, because the patient would not accept the diagnoses which the social worker consider to be a social construct.

All of these issues are potentially resolvable through better system design, clear governance arrangements and better user training, but in practice become irresolvable when the scope of the record gets too great, much better that each user shares their primary record only with those within their Hawking Horizon and uses other methods (described briefly above) to communicate beyond it.

When the record quality issues of an SSEHR are added to the security, privacy and consent issues associated with such records and considered alongside the ossifying effect they have on competition, choice and innovation, we really have to think again.

I shall return to this and associated issues in future blogs and try and describe some alternative approaches that make it easier to get the better more appropriated sharing of information and communication that can lead to better care.

A Lost Opportunity?

Slightly of the informatics theme, but then there can’t be a successful health informatics programme, only a health transformation programme facilitated by informatics The current Government’s transformation programme is the most radical in the NHS’s history and we can not and should not try and consider health informatics issues in isolation.

My political sympathies don’t lie with the current Government, but, like many I am supportive of the key principles behind the current reforms – A greater role for clinicians; more involvement and control for patients and greater plurality in the provision of care. However, also like many I am concerned about the method and pace of the proposed changes and have some concerns about specific details.

The incoming 1997 Labour Government frittered away the very considerable support it had for The NHS Plan with a disruptive reorganisation of NHS structures – Shifting the Balance of Power – and the current coalition looks like repeating the mistake.

There is a well know quotation attributed (some say incorrectly) to the Roman General Petronius Arbiter

We trained hard . . . but it seemed that every time we were beginning to form up into teams we would be reorganized. I was to learn later in life that we tend to meet any new situation by reorganizing; and a wonderful method it can be for creating the illusion of progress while producing confusion, inefficiency, and demoralization.

Genuine or not, it also reflects my experience in the corporate world and I have concluded that while all structures can be improved by an appropriate reorganisation that the benefits rarely match the disruption involved in doing so and that it is better to evolve existing structures. Problems in all organisational structure are concentrated in the interfaces between their components and while you can move these interfaces around you can’t eliminate them, while if you leave them alone formal and informal arrangements develop to make them work, even though they may not be in the optimal place.

Keeping PCTs and SHA in place while radically but incremental reconfiguring them to be clinically led and more responsive to patients would have not created the same political splash (which in any case has nearly drowned the politicians that made it) but would have been a practical option. Similarly while I think the re-alignment of the boundaries between health and local government make sense I am not persuaded they are worth the disruption making the changes may cause.

So this was mistake number one. The second was probably not buying off the BMA soon enough. Nye Bevan said that to create the NHS he had “stuffed their [the Doctors] mouths with gold” subsequent Ministers have learn (often the hard way) that the only way to secure medical cooperation is to buy it and that doctors and GPs in particular are actually quite responsive to modest incentives (just like the rest of us) GPs I know fall in to three groups on the current reforms : Two small groups, one highly supportive and the other vehemently opposed with the vast majority in the third group who want to know “what’s in it for us?” GPs and the BMA are also properly concerned about what’s best for their patients, but I think few doubt that their patient’s best interest would be better served with greater clinician involvement and more patient control. A little less stick and a bit more carrot would probably have secured their cooperation.

The biggest problem is of course the one that’s near impossible to address and that is the difficulty of trying to implement a transformation programme at the same time as trying to achieve savings in current activity greater than that that any healthcare system anywhere has ever achieved. QIPP supported by IT and the clever use of information is the way forward, but I despair that only the bully, slash and burn approach is likely to deliver on the short-term imperatives faced by NHS managers.

Let’s hope the current pause for reflection will help us to make the reforms work. The status qou is not an option, radical change is needed, but this does not need a radical reorganisation of NHS structures.