BMA response to 'Clinical development of the NHS care records service'
5 October 2005
- Introduction
- The detailed care record
- The summary care record
- Work to be taken forward
- Management of the NHS Care Records Service
Introduction
Whilst the BMA supports the sharing of information to improve patient care, we are disappointed that the architecture of a system, which will have huge implications to the delivery of healthcare, was commissioned and built prior to stakeholder consultation.
We welcome an incremental approach to implementing the NHS Care Records Service and an evolution based on pilots. We would like further clarification on who will be responsible for signing off each release before progressing to the next stage and what the mechanism for stakeholder involvement will be in this process. Ensuring that the system is fit for purpose for both clinicians and patients, at each stage of delivery, must be prioritised over meeting political timescales. Failure to do so could not only jeopardise confidence in the system, as demonstrated with the implementation of Choose and Book, but also put patient safety at risk.
We note that separate arrangements for IT are being made in the rest of the UK and emphasise the need for not only information sharing but also for an active dialogue to ensure real interoperability between the 4 countries. We recommend that Connecting for Health considers progress in Scotland, where the Emergency Care Summary Record is being implemented. For example Connecting for Health could inform their own programme by researching issues such as:
- the number of patients who have opted out in Scotland
- the perceived value of the summary record to Scottish clinicians
- clinicians’ and patients’ views on the amount and type of information on the summary
The content of both the summary and detailed Care Record must be very clearly defined and communicated to healthcare professional and patients. The paper states that when a patient is referred to another NHS organisation, unless he or she chooses to limit participation, that organisation will have access to all or part of their record. It is not clear how the access will be controlled so that the healthcare professional will only see the data, which is directly relevant to the care of that patient provided by that particular healthcare professional i.e. an optician will only see information relating to diabetes.
It is not clear from the paper how the different views of records will be presented to the healthcare professional. For example, if a clinician wants to view the summary record, will it be presented on a different screen and will the clinician be required to flick from one to another or will the summary record integrate into the care professional record? If so, how will the clinician differentiate between the two sets of entries? Similarly, if a clinician wants to look at the key summary data, his/her own record and information contained in the detailed care record – how will those be presented and managed to ensure that clinicians do not suffer from information overload?
We would also welcome clarification of how a patient will control the flow of data on their detailed Care Record and see what they have consented and dissented to be shared in the past.
In relation to ensuring that the systems are user friendly, we are aware that the Joint GP IT Committee of the General Practitioners Committee and the Royal College of General Practitioners (JGPITC) will accredit any new systems as negotiated under the new General Medical Services (GMS) contract. What plans are in place to sign off secondary care systems to ensure that they are fit for purpose and useable from a clinical perspective?
We are in agreement that access to the Detailed Care Record must require explicit consent from the patient. However, if explicit consent is deemed necessary in the first instance we would like further clarification on why wider sharing may be possible with implied consent in the future. We remain concerned that implied consent is sufficient for sharing the Summary Care Record. How will Connecting for Health ensure that more vulnerable groups are reached, for example patients who don’t speak English? It is essential that patient groups are fully involved in the public awareness exercise. The BMA’s Patient Liaison Group has been established to provide an informed patient view on health issues and we hope that this group will be fully involved in this process.
The summary care record
The paper states that the summary record must be carefully controlled and each organisation will be responsible for maintaining its part of the summary record. We remain concerned that there is no mention of an overall guardian of the record, and although it is not explicitly stated in the paper, we hope that the Caldicott guardian will play an active role in this area. Who will address issues such as discrepancies between data held on a shared record for example when clinicians have conflicting views on treatment? Who will be responsible for checking the overall quality and accuracy of a multi-contributory record?
We note that the initial summary record will be provided from the GP record. Although GP records use Read codes, there are still differences between the way data is entered by GPs, even within a single practice, and we would welcome further information about how a standardised extract can be generated from non standardised entries. In addition, it is often the case that the code itself is not complete without free text to place that code in an appropriate context. How will the narrative elements of the record be accommodated when the data is transferred to the summary record? There will also be significant workload implications for GPs and we will highlight these issues when responding to the ‘A Step on the Journey’ paper.
Work to be taken forward
The paper provides an outline of the three different work streams to consider issues, which will have a huge impact on the working practices of clinicians. In what way will clinicians and patients be involved in these work streams? What are the plans and timescales for consulting on the outputs of these work streams?
The BMA is also keen that the clinical development of the NHS Care Records Service takes account of the needs of health service planners, public health doctors and epidemiologists to obtain accurate and up-to-date anonymised data for 'secondary uses'.
Management of the NHS Care Records Service
The BMA remains concerned that it has no direct mechanism for making its views known through the existing Care Record Development Board structure even though the Board has the authority to sign off decisions, which have enormous implications to the entire profession.