1. Hazard Name: Lack of ability to reconstruct the database as it was at any time in the past
Risks: Failure to support the ability to recall the patient's or clinician's view of care at any specific time in the past, leading to psychological harm to patient or reputational damage to the clinician, which might have legal consequences for either.
Audit trails are an important part of any electronic patient record, (and in particular any temporarily jointly-assembled record) allowing the record to be reconstructed as it was at a particular point in time, often for medico-legal purposes. Shared records which construct a view of multiple sources of data on the fly present a particular challenge. One solution might be to keep an audit trail of the data published and consumed; what data was published and what viewed. The source systems' audit trails should be able to reconstruct what data would have been published (i.e. visible to the user) at that point in time.
There was agreement that changes to the content of Shared Care Records should be made in the contributing source's system. Furthermore, with any shared care record, agreement should be sought at the outset on how data can be edited, and what was the appropriate way to edit it, so that the provenance of any change can be ensured and the reasons for change noted. Users need to be educated about this and guidance should be available.
A question was raised about the preservation of an audit trail when a system that has contributed to a shared record ceases to exist. The group recommended seeking a national solution for this. be sought.
2. Hazard Name: Information missed by failure to curate the record
Risks: Important data may be missed out or de-emphasised, leading to patient harm.
Without curation, EPRs could become cluttered with minor or irrelevant items, historic items could be shown as current, and important data items could appear under the wrong headings or be deemphasised because of their placement in the hierarchy. This becomes of more importance when the data is shared.
There should be a policy on record curation, and a recognition both of its importance and the time taken to undertake it. In relation to shared care records, the contributing organisations should be made aware of the importance of curation, and ensure that their staff are competent in curating the records. It was recommended that all data shared using a shared care record should be subject to agreed data standards.
Record curation is a complex time-consuming exercise, and it was felt to be an area where AI might be deployed in future both to curate and present data relevant to each user.
3. Hazard Name: Information loss by curation of the record
Risks: Important data may be missed out or de-emphasised leading to patient harm.
There is also a risk that curating the record can lead to harm. This might occur if the curator has a different view of the importance of specific data items. This is of particular relevance where different disciplines are involved. What is important to a specialist may be radically different to a GP. Additional problems may arise if curation occurs in a different record structure, which changes the provenance of the item; or where there is uncertainty over who is responsible for a particular area of the record which is of common interest.
It was recommended that there is clarity in any shared care record about the importance of curating the records and who is responsible for what data items. It was also recommended that different organisations using a shared care record should be able to filter the data in a way which is suitable for their use, i.e., to create their own summary view of the data.
4. Hazard Name: Poor Data Quality
Risks: Data is not available when health care workers need it to make a diagnosis or adjust treatment accurately. Unnecessary repeats of investigations may be ordered which are unpleasant for the patient, inconvenient, create delays in diagnosis, waste resources, or block resources for others. Financial loss may occur in relation to outcome-related financial targets such as the Quality and outcomes Framework (QOF), leading to less investment in, or reward for, the health care organisation.
This can occur where:
- users are not confident in the correct use of terminology, leading to poor coding.
- important data is not coded but entered as free text.
- data from external sources are not captured onto the record.
- there is a lack of training in data quality and good practice in use of EPRs.
It was noted that QOF had led to better recording of those clinical areas reimbursed in Primary Care. It was also noted that in secondary care data was often entered specifically for remuneration purposes, and often not contemporaneously.
The importance of training and education in the use of terminology and EPRS at all levels of medical education and careers would help. This should be relevant to the needs and context of the users, and ready access to clear information and guidance should be available. Evidence of training in data quality should be an important part of any quality assessment of an organisation.
The use of data entry templates and the constraining of the use of the terminology by use of value sets in different areas of a record can contribute to better quality. Regular feedback on data quality in the form of targeted audit could also play a significant part in improving quality.
5. Hazard Name: Data loss or corruption as a result of the de-duplication process
Risks: Clinician considers patient's condition more or less serious than it really is, and overtreats or undertreats the patient as a result.
The process of de-duplication of data, where it is supplied by multiple sources, may lead to the incorrect assumption that a patient has only had one event when in fact they had had multiple events; or that they had had multiple events when they had had only one. It may not be clear from the record that a data entry has been de-duplicated and is therefore not visible. These issues may occur where an algorithm is used to filter out multiple entries of what is considered to be the same entry.
It is recommended that where data has been de-duplicated the data item is flagged and that all data considered to relate to the same event should be accessible if required. It is also recommended that the process and potential consequences of de-duplication are clear to all users and included in training on the system.
6. Hazard Name: Inability to correct certain data items
Risks: The true condition of the patient may be misunderstood, leading to patient harm
In a shared care record data items may be identified as being erroneous, not granular enough, or disputed. Where items were entered by another organisation the current user may not have authority to edit them. The owner of the data may dispute its inaccuracy and there may be no method for resolving these disputes.
One solution in use is to have an executive organisation, with representation from all contributing organisations, which would be the ultimate risk owner and would be responsible for commissioning the necessary software, training, end-to-end processes, and day-to-day running of the software and the service it supports. Processes to agree these issues should be defined and users educated in their use.
It was also recommended that mechanisms should be available in systems to add an attribute or flag to an entry to declare it to be disputed or felt to be erroneous, together with a built-in mechanism to request author review.
7. Hazard Name: Deletion of disputed or erroneous data
Risks: Important data about the change, or what led to it, may be missed, leading to patient harm
Previous deletion of disputed or erroneous data means that the original entry is not visible to the user, other than in the audit trail. When data is deleted there should be an appropriate mechanism for easily and conveniently displaying the deleted data, the reason why it was removed, the date when it was removed and what was substituted for it.
This is mitigated in part by one organisation currently not being able to delete data entered by another; and data should only be changed in the source system. Nevertheless, there should be mandated, professionally approved mechanisms in EHRs for deleting or editing entries; such corrective mechanisms should be facilitated by the system.
8. Hazard Name: Third party data shared inappropriately
Risks: If the third party complains, the data controller may be fined by the Information Commissioner's Office (ICO) for breaching the General Data Protection Regulations (GDPR). In addition, the patient might sue the GP. The patient's relationship with the third party(ies) involved may suffer and thus damage non-professional care provision.
Patient safety may be put at risk if the identity/ whereabouts/ contact details of relatives of estranged/ abusive individuals is inadvertently revealed as a result of a data breach during, say, a download of a case file to a solicitor.
EPRs contain a variety of third-party data and there is no agreed mechanism for flagging this data. IT may be implicit in coding, contained in free text or an attached document. There is a risk of this being shared in a subject access request. The risk increases as the data is shared and more people and organisations have access to the data. This applies even more if shared records can be accessed via patient portals.
The group recommended that there should be an agreed universal mechanism to flag data as "Thirdparty", which would allow it to be automatically redacted in certain views or accesses. Shared care records should have a clear policy on how this is done, and all users should be educated about this and have access to guidance.
9. Hazard Name: Specific data items may be seen by inappropriate users
Risks: Patient confidentiality breached leading to psychological harm.
Generally, the more the data is shared the less control there is over who can see it. The degree of granularity of Role Based Access Control (RBAC) may not be sufficient to ensure that only appropriate data is viewable by other specific users. It may not be adequate to base this on role such as 'consultant' or 'clinician'. What is relevant to a gynaecologist may well not be to an Orthopaedic surgeon.
Trying to police access by limiting access purely by role, i.e. by RBAC, is not sufficient to resolve this problem. We recommend that consideration be given to setting up of the immediate auditing of access to particularly sensitive information, so that at all stages, all users constantly ask themselves 'should I be accessing this?' knowing that someone else will inevitably be watching what they have chosen to do.
10. Hazard Name: Important data not visible to user
Risks: The patient may be harmed because of data not being visible - for example access to data relating to important diagnoses, investigations or treatment might be restricted where the view of record is filtered for a specific purpose or in the attempt to minimise 'unnecessary' data sharing.
Although the application of the GDPR is intended to minimise data which is inappropriately shared, in practice it has created complex stresses and uncertainties for both individuals and organisations who are trying to minimise data sharing but equally, very correctly, wish to maximise the ethical sharing of important data. In particular we were mindful of the recently added seventh Caldicott principle - that the duty to share information can be as important as the duty to protect patient confidentiality.
Practical problems often arise within the NHS because different arms of it are treated as 'different organisations', with potentially draconian limitations on what can be shared. To improve this situation yet remain both ethical and within the intention of the GDPR , consideration should be given to treating the NHS and Social Care as a single body for GDPR purposes. Under such an approach, any work performed under the aegis of NHS/Social care (i.e. organised and/or paid for by NHS/Social care) would automatically be treated for GDPR purposes as occurring within a single organisation (NHS/Social care), and thus not be affected by GDPR rules about passing on information to other organisations.
11. Hazard Name: Failure to retain or delete safeguarding records appropriately after the age of maturity is reached
- Inappropriate retention of safeguarding data leading to psychological stress on the patient.
- Inappropriate removal of safeguarding information leading to continued physical/mental abuse of someone who is vulnerable.
- Legal punishment for the individual/ organisation in relation to inappropriate removal/ retention of safeguarding information.
Health care workers are not clear about their legal and professional responsibilities and duties in this regard. There is widespread uncertainty about the legal aspects of record deletion/retention in a shared medical record where those entries relate to safeguarding. Important data regarding safeguarding may be shared from the source record but the metadata around how long to retain it may be lost, or absent in the first place, or the shared care record may not have an agreed mechanism for dealing with this. For instance, it is not currently part of the Professional Record Standards Body (PRSB)'s Core Information Data Model.
The design of shared care records should include a 'retain until' date or 'retain after', where safeguarding data is known to be required to be deleted at some time in the future or retained beyond expected time. Automation of deletion at appropriate date could be considered.
It was felt that there was a lack of clarity over the regulations (both legal and professional) in relation to the retention of records - in particular, after a juvenile, previously subject to safeguarding supervision, has attained legal maturity; and after a patient has ceased to be treated by an organisation.
It was felt that clarity should be sought from the medical and legal profession and then widely disseminated and regularly taught - particularly if any changes to the recommendations have occurred.
12. Hazard Name: Original document not available
Legal data may indicate that there is a signed Power of Attorney or a 'Do Not Resuscitate' document, but there is no link to it within the record.
This could lead to legally binding decisions not being followed leading to patient harm and legal action against HCP.
This may occur when the original record stored on a contributing system is not shared or the original record not stored on the system and there is no indication of where it might be stored.
It was noted that the presence of an entry indicating the existence of a document reduces the risk of a document being missed, but does not eliminate that risk. The importance of such forms lies not so much in that they exist, but in the exact details contained within them, and the knowledge that they are indeed the most up-to-date versions.
It was suggested that a central location for legal documents is developed, or alternatively the use of Digital Object Identifiers (DOIs), so they can always be accessed.
13. Hazard Name: Medication details not complete or not accurate in a Single Shared Record
Risks: Patient harmed by inappropriate medication or its delivery.
A patient might continue medication which should have been stopped; or does not start medication which should have been started; leading to possible harm. Alternatively, an additional medication is prescribed which causes interactions with existing but not visible medication; or symptoms are not recognised as drug side effects because the new drug is not mentioned in the list of currently prescribed medication; or the dose of the drug visible on screen does not alert the user to the possibility of a relation to a specific side-effect which tends to be dose related.
This hazard was felt to be caused by the lack of ability of a user to change or delete medication issued by another organisation. For example:
- Secondary care prescribes drug (or new drug timing/pack size/instructions) which it wishes to be continued, but GP is unable to edit.
- Community care wish to stop drug prescribed by GP, or amend the dose given, but are unable to edit.
- A drug prescribed by the hospital is not prescribable by the GP, who is unable to re-authorise or amend it.
- GP unwilling to prescribe medication recommended/requested by a hospital consultant or clinic (NB a potentially valid action if the specialist's recommendation clashes with the treatment being provided for a different problem.)
- Lack of clarity over who is responsible for prescribing/initiating/monitoring/discontinuing a medication item.
It was noted that regarding this, SystmOne has a facility to message a repeat prescriber in another organisation, which creates a task to amend prescriptions which that second person originally created/authorised. (However, this may introduce a delay before the appearance of a prescription change in the shared record.) Developing mechanisms in single shared records to prevent reauthorisation of medication until a medication change from a third party is reviewed would mitigate this. One such mitigation would be to add a very prominent flag to a medication item, where a clinician other than the initiator wishes it to be stopped or altered. The flag should ensure it cannot be re-issued without review.
In shared records which are not the prime source of entry, medication is managed in the source system, and this is a mitigation. However other issues arise in updating the medication when changes are made to the recommended medication. When care is handed over and a change in medication recommended this may not be reflected for a period of time in an updated medication record in the source system, leading to the patient taking a regime different to the one recorded. Some medications are prescribed by the hospital only. These can be added to the record of prime entry in another organisation as "prescribed elsewhere" but the use of this facility is both not mandatory, and variable.
To have a single medication record is a laudable aim and the possibility of using a single national central patient medication database should be explored.
This hazard is likely to occur when there is a lack of clarity over ultimate responsibility for prescribing, when there is a difference of professional opinion; clarification at national level of the relevant responsibilities here regarding this should be sought as a matter of principle.
14. Hazard Name: Multiple Entries of same data item
The same event may have been recorded by different organisations or by the same organisation multiple times, leading to two or many entries of coded data for that event. This may occur because:
- An HCP adds an event or diagnosis code as reason for encounter...
- ... or an on-going review or does not use episode notification correctly.
- A data item might be coded to one level of granularity by a specialist, and to a lesser level by the GP, and then both entries are displayed in the shared record.
- The same event may be recorded with different dates, especially if one date is the date of first symptom occurrence and the second is the date of a letter/ date of diagnosis.
- An individual item may need to appear under two or more headings (e.g. blood pressure). There needs to be a mechanism by which a single entry can be made to appear under several different headings.
In non-single shared records, there is likely to be a de-duplication process, which will tend to mitigate this, but may add the hazard of losing data. Consideration might be given to introducing de-duplication to single shared records, or at least providing a de-duplicated view of the data. The meeting discussed designing ways of displaying similar data items, and/or flagging that there is a similar one already in the record when entering a code.
Education and training in the use of EPRs is needed, to ensure that users understand the importance of only entering events once; with an appropriate use of coding and date; only after visually checking that the diagnosis hasn't already been entered; and that they understand the use of episodicity.
15. Hazard Name: Structure of record may prevent important information being found
The detailed way in which individuals or organisations choose to lay out the record may prevent information being seen (or easily discovered). Ambiguity over the laying out of the record also creates uncertainty over where specific entries should be placed. The importance of specific pieces of information may therefore be misunderstood. This can lead to important data may be missed or misinterpreted, leading to patient harm.
The causes of this are thought to be:
- where the record is not sufficiently structured, so there is simply too much data and important facts may be overlooked
- the structure is unfamiliar and it is not clear where to find information (this applies particularly in unfamiliar shared records with many section headings)
- The structure of record may be restrictive, with no appropriate heading for data to be placed under...
- ...or because the structure of the record is repetitive/ambiguous and there is no single clear place to put an individual item...
- ...or there are several different places (quite fairly and logically) to put the information (eg. BP under CVS, diabetes, eyes...)
- There may be an inability to suitably filter the View for current needs of the user
- The user may be prevented from curating data entered by another user...
- ...or the record may not be not curated by anyone due to lack of time; or recognition of the importance of curation.
There has been extensive consultation on the structure of the record by the PRSB in building the Core Information Standard, but it is not clear whether this is enough. In particular it consulted on what sections users wanted to see and not about the structure and relationships of that data in the core systems.
This can be mitigated by allowing different ways of laying out and viewing the patient record that can be selected and created by different users or groups of users, organisations or specialists. It needs to be ensured that users are involved in design of these alternative layouts and that adequate initial and on-going training is provided in the use of the EPR.
The Shared Record Professional Guidance paper states:
The design of shared records needs to take account of this problem. Some potential recommendations, which might reduce the chance of this kind of problem occurring, are to ensure that:
- Representatives of all health professionals using the shared record are involved in defining the headings under which data items are listed
- Data items can appear under multiple headings as necessary
- The names of the headings are as explicit as possible to as many professional groups as possible, to reduce ambiguity
- Patient involvement in deciding headings could be considered as an option if no agreement can be reached between professionals. This would also help patients to navigate their own record, an important goal but one which is outside the scope of this review.
16. Hazard Name: Loss of data context and/or provenance
This may occur where the context of data (the way it is recorded in the logical data model) in the contributing system is lost on sharing, or it is not clear where the data has come from. This can lead to important data being missed or misinterpreted leading to patient harm. ('Patient improved' is of little use if it isn't clear which symptoms are being referred to.)
This problem may be caused by an inability in shared records where data is shared in from multiple sources to fully replicate or integrate the data models of all contributing systems. Misinterpretation of dates attributed to a data item e.g. date of entry by comparison with date of event may also cause this hazard.
The group felt it was important to ensure that the logical data model allows context and provenance (especially around use of dates) to be preserved as much as possible when data is shared with another record and that it is important to ensure the relevant data in a problem is shared where it supports a narrative or a diagnosis. Reference was made to the Shared Record Professional Guidance paper comment that "Data becomes information only when the context of use is known".
17. Hazard Name: Referral Information is ignored by recipient
There is a risk that the referral Information is ignored by the recipient either because too little information is shared and it is of poor quality or because too much is shared by a data dump from the computer system leading the recipient to devalue the data shared.
In Single Shared Records, referrals may very appropriately be made internally within the system, where data dumps add no new information and simply cloud the issue. However, in some circumstances this may lead to proper attention not being paid to truly important data in the referral, leading to misinterpretation of need or inappropriate care. As a result, the patient is thereby harmed physically or psychologically.
The causes for this hazard include:
- performing a data dump from all or part of the record, rather than carefully selecting/quoting appropriate information.
- or, if using same Single Shared Record as the recipient, failing to stick to just a brief, concise statement of why a referral is being made which refers to salient findings already within the joint record.
A mitigation was noted to be the PRSB clinical referral standard, but it was felt that it would be beneficial to have an agreement around what best practice is, when referring using different systems, together with ensuring that users are educated about it and can find guidance to support them.
18. Hazard Name: Unclear who is responsible for different parts of patients' care
There may be an inability to tell from the shared care record who is responsible for a particular part of the patient's care. This may lead to important care actions not being carried out by the intended HCP, leading to patient harm.
This may be caused by an overlap of areas of care; and of transfers of care where there is no clarity in record of who has agreed to be responsible or no standing national or local agreement on who is routinely responsible in such cases. It might also arise where there was an introduction of a system to hand over tasks with no agreed standards on appropriateness.
It was noted that there were some recommended professional behaviours already in place, but these have not been uniformly adopted, updated, or monitored.
The group noted that there is a lack of clarity over responsibility for care actions, particularly at interfaces of care. Agreeing who is responsible is particularly important over dealing with the results of investigations, reports and unexpected incidental findings. These should be agreed by the professions, nationally adopted, and their use monitored. Consideration should also be given to mechanisms to embed formal hand-over in system design, allowing for acceptance or rejection of the request. (See Assessment, Discharge and Withdrawal FHIR model.)
19. Hazard Name: Safeguarding information not found, or data is inaccurate, incomplete, or inaccessible
Important data about safeguarding is missed by user or misinterpreted and as a consequence a patient is put at risk of harm or abuse.
The causes of this might be:
- the absence of a special shared area within which to place safeguarding information.
- the failure of some or all the contributors to the joint record to place safeguarding information in the correct places.
- the failure of some of the users to look at these designated safeguarding areas.
Another issue noted was where a user does not have appropriate RBAC to be able to see the information.
In one Single Shared Record (SystmOne) there are pre-defined sections within the shared record for depositing safeguarding information. Data sharing in these areas is specifically and deliberately not subject to the control of the patient's/carer's consent mechanism, in order to ensure that the contents of these areas cannot be suppressed inappropriately by patient or carer.
The correct use of RBAC, with appropriate granularity, is required to ensure that these areas are/aren't visible to relevant health care workers (who may not necessarily be healthcare practitioners: clerical staff may well need to know that safeguarding concerns exist, even if they are not permitted to view all the details).
The group recommended that there are clearly identified sections of the record for recording and viewing safeguarding information of various types. It also recommended that users are educated in how safeguarding information is displayed and that instant audit alerts are set for sensitive data items as this was felt to be better than using RBAC which could stop vital information being accessed.
20. Hazard Name: Inappropriate data produced in a report about an individual patient
A report might contain data which, from a legal point of view, is inappropriate, either because there is too much data included or too little for that purpose as measured against legal and professional guidance.
There may be uncertainty on what data should or should not be shared from a shared record when creating a legal report or subject access request (SAR): for example, do they contain the entire shared record, or only the part entered by the organisation from whom the SAR has been requested.
There is legal advice already on this, but it is not well-understood, nor easy to look up with certainty.
There is a need to develop standard recommendations and instructions about the legal aspects of creating medical reports in relation to confidentiality, GDPR etc- reports for patients; referral letters; insurance reports; safeguarding purposes; SARs; and court reports. The structure and content of these recommendations should be professionally endorsed. These agreed instructions need to be readily available from a single government website.
Based on this, organisations need to create and maintain ongoing tuition about the legal and practical technicalities of creating reports in their organisation, and when using their data, and data emanating from other organisations using the shared record.
21. Hazard Name: Lack of training and education in use of EPRs
There is a lack of training and education in the use of EPRs (EHRs), especially in shared records, both generic and system-specific. This applies to all levels of medical education. The consequence of this can be poor quality records leading to important information not being accessed or not available when needed and the patient suffers harm as consequence.
There was felt to be a lack of consistency in achieving permanent solutions, caused by:
- Lack of decision-making nationally about matters of professional behaviour and principle
(e.g. responsibility for prescribing; or for follow-up of abnormal test results)
- Failure to get national/local agreements over which codes to use/avoid in specific situations (especially in relation to the QOF)
- Failure to clear up legal problems/anomalies (e.g. re GDPR)
- Failure to teach the final conclusion of these matters consistently, widely and regularly enough
- Lack of consistency over putting solutions into place across the whole of the NHS estate.
It was noted that there is some teaching, but it is often very basic, often only done at the beginning of the use of a piece of software, not followed up, not performed regularly, and doesn't allow users to develop a deeper understanding around the use of the software; often new entrants aren't actually formally taught.
The group recommended On-going support and training in the use of systems (and not just induction of new staff or when the system is initially deployed); and better training throughout clinical education in all disciplines, in the use of EHRs and the importance of keeping high quality electronic records.
22. Hazard Name: Incorrect or inaccurate SNOMED CT concept
An SCT concept in the record is incorrect or inaccurate or loses specificity by being higher in the hierarchy.
The risk is that important data may be missing, leading to patient harm. Computer-based decision support may be triggered inappropriately or not at all, leading to failure to give best care. There may be financial implications for the user of the record or another organisation if quality payments are based on inappropriately recorded data.
The causes of this are:
- Different levels of clinical expertise may lead to different levels of recording data.
- Lack of education and training for users of the system in SNOMED CT
- No constraints on SNOMED hierarchies
- Non-QOF code added by another organisation, leading to failure of decision support.
- Not all organisations are using SNOMED CT; data may still need to be mapped from another terminology, leading to errors.
SNOMED is now mandated throughout the NHS, which will improve consistency. Consideration might be given to constraining the use of SNOMED hierarchies in different areas of the record to improve data quality.
There should be agreed and mandated standards for record-keeping across agreed care pathways, mitigating for differences in systems. Education and training in use of terminology throughout medical education is needed to ensure there is understanding of the appropriate use of concepts in different hierarchies, especially the use of concepts in the Special Context hierarchy which include such things as Family History, and which may not themselves refer to the person who is the subject of the record. In addition, there is the potential for concepts added by one organisation to affect financial and clinical targets (such as the QOF) in other organisations. A common example is where a diagnosis code is added for a second time (suggesting a new diagnosis) instead of a treatment code; or a procedure concept such as 'Flu Vaccination given' rather than a concept indicating a third party had carried out the procedure.
Data Quality audits and feeding back to users would be a useful tool to drive up the correct use of the terminology. A one-off exercise was undertaken, auditing the use of Read codes in the IM&T Direct Enhanced Service (DES) in 2006, which exposed significant misuse of codes, such as adding "Meningitis" diagnosis codes instead of the vaccination code.
23. Hazard Name: Inactive concept or local code shared to the shared record
An active or local concept in the contributory system becomes inactivated in the shared record.
The consequence of this is that important data may be missing leading to patient harm; or decision support may be triggered inappropriately or not at all. Both these can lead to failure to give best care.
Different organisations using different editions of SNOMED CT or not updating synchronously may lead to an active SNOMED concept becoming inactive in the shared record; or if organisations use their own SNOMED CT namespace and generate their own concepts. The shared record will not be able to understand these in a structured manner. Both of the above could lead to an alert not being triggered, and consequent patient harm.
The UK Standardisation Committee for Care Information (SCCI) standard does require the use of UK edition. The version of SNOMED used in each contributing system should be part of the metadata included with the data, so that the manner in which it behaved in the contributory system can be understood. System suppliers need to ensure their local codes are mapped to SNOMED equivalents as they become available. Generally, the use of local codes should be deprecated.
24. Hazard Name: Post co-ordination of SNOMED or qualifiers allowed by some organisations contributing to record
A post-coordinated SNOMED term or a SNOMED term with a qualifier could be received but not understood by the shared record and meaning is lost.
As a result, data may be incorrectly interpreted leading to patient harm, e.g. in relation to certainty of diagnosis, laterality and possibly negation.
This would occur where there was adoption of post-coordination, or use of qualifiers by an individual organisation without considering the shared record consequences. i.e. The shared record cannot handle post co-ordinated concepts, but the contributing organisation does. Consideration should be given to this in developing shared records.
25. Hazard Name: Important data not found by user
If the usability of the system is poor for some or all users, making it difficult for them to use the system effectively, important data may not be found.
This can lead to data not being available when a HCW needs them to make diagnosis/adjust treatment accurately and patient harmed or to investigations being repeated, which are unpleasant and inconvenient for the patient, and may create delays in diagnosis, waste resources, block resources for others.
The causes of this were felt to be:
- Poor interface, unclear headings
- Not clear which section to find data in, or place data in
- Data tsunami leading to important data not being easily visible.
- Incorrect or poor data being entered or data not being entered.
- Poor usability of system may lead to lack of user engagement with/ownership of the system leading to devaluation of shared record.
Different organisations and even different users will want to view different data in a summary. Therefore user-configurable views of the data are important; and users need to be involved in the design and its updates, and allow customisation to accommodate preferred workflow.
26. Hazard Name: Inaccurate or incomplete vaccine record
The vaccination history is inaccurate or incomplete leading to a vaccine dose not being given or given inappropriately.
Separate IT systems may not all be connected into the shared record or the record may be based on patient or carer recall in a particular record e.g. inaccurate recall of vaccine or date or cardinality Vaccination history in certain records (such as the Maternity Care Record) may be restricted to specific time frame or specific vaccines.
Everyone connected with the immunisation and vaccination programmes should be properly trained to ensure that all contact and work performed is fully entered into shared patient records - but only the once! - and in particular, using administration and reminder codes so as carefully to distinguish between the plans and preparations for immunisations, and the immunisations themselves.
The provenance of the records should be clear as well if effective construction of a single vaccination record is to be created.
27. Hazard Name: Value set prevents correct data appearing in correct place
Value sets are used to constrain many fields in the shared care record. If they are incorrect/incomplete or not kept up to date the appropriate data may not appear.
The maintenance of large complex value sets can be time consuming and expensive. Ownership of any value sets should be clear.
There was agreement that changes to the externally-derived content of Composite Shared Care Records (CSR) should be only made in the contributing source's system by its owners and then carried through into the CSR itself, although they may have been prompted to do so by the CSR owner.. Furthermore, with any shared care record, agreement should be sought at the outset on when and how data can be edited, and what was the appropriate way to edit it, so that the provenance of any change can be ensured and the reasons for change noted. Users need to be educated about this & training and guidance should be available.
A general concern/question was raised about the preservation of an audit trails when a system that has individual systems cease to exist and in particular if they had contributed to a shared record ceases to exist. This principle applies to all EPRs and the group recommended seeking a that a national solution for this should. be sought.