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.