22 Appendix M expert review group questions (page 25 of 27) in Final report (chapter 2 of 5) within Core Information Standard: Reports

Questions from the first expert review group meeting (1 May 2019)

General questions

1. Does the overall structure of the model make sense to you?

2. Is anything included that you don't think is necessary for the first release?

3. Retaining the clinical context of the information has been raised as a clinical safety risk. The maternity shared record work introduced the use of the following elements to provide some contextual information:

   • Performing professional (the professional linked to the record entry)
   • Date (the date of the activity day/month/year, e.g. the date that the procedure took place)
   • Location (the organisation/institution at which the activity took place e.g. the hospital at which the procedure took place)

Is performing professional required as we don’t know what it is – for example when testing blood – is the performing professional the person who ordered the test, the person who took the sample, the clinical scientist who actually performed the assay or the consultant/GP responsible for the order at a senior level – or perhaps all of these? Should specialty be added as an additional contextual data item?

4. An additional concern raised, related to question three above, is that the information model does not articulate the links between the different types of information. For example, a diagnosis would be linked to an encounter/consultation and a diagnosis may be linked to an investigation result or an assessment. It has been discussed that in order to be clinically safe, these links need to be articulated in the model. However, links between information types may depend on use cases and this information model is designed to be generic and should apply to multiple use cases. What are your views on whether the links should be defined in the PRSB information model?

5. The principles we have used to define whether a section, cluster or element is mandatory, required or optional are as follows:

   • Minimise the number of mandatory data items.
   • The only mandatory sections are patient demographics and GP practice.
   • All other sections are required because if the information is there it expected to be part of the record.
   • At element level some items are mandatory all others are required

Does this approach make sense, or should some items be optional if they were optional in other standards, e.g. in the medications and medical devices section?

Specific Questions

6. Does “plans and requested actions” make sense as a separate section when not linked to a clinical summary or a discharge summary (for example) – is there sufficient context, if not how should we demonstrate context? • Does “plans and requested actions” overlap with investigations requested – should we include investigations requested underneath plans and requested actions?

7. In encounters - discharge, attendance, admission – is sufficient information included, for example does clinical summary need to be included with discharge?

8. Is there a need to record an assessment of a carer’s competence – this came up in the workshop. If so, could this be recorded under assessments?

9. Should we record if a person is interested in taking part in a clinical trial – this came up in a webinar?

10. Correspondence has been raised as a requirement. There is currently no metadata standard to support correspondence. This was highlighted as a gap in the discovery work. What metadata should be captured about a piece of correspondence?

11. Should we include a distribution list for letters?

12. We have replaced the immunisations section with vaccinations – do we need to add the following elements to cover self-reported vaccinations:

• Reported date: The date or partial date that the reported vaccination was given in the opinion of the person and/or parent/carer • Primary source: An indication that the content of the record is based on information from the person who administered the vaccine. This reflects the context under which the data was originally recorded. • Report origin: The source of the data when the report of the vaccination event is not based on information from the person who administered the vaccine.

13. The core information standard does not include a heading for maternal medical conditions or infectious diseases arising in pregnancy which may have an impact on the foetus – would this be relevant to include? Outside of the neonatal period it may not be required. This query came up in the maternity webinar.

14. What is normal for a patient was discussed in two contexts – in relation to observations and in relation to their general wellbeing.

• Observations are already recorded under examination findings. Is it useful to record what is normal, e.g. able to use stairs etc in the core information – where should this be recorded?

15. One of the issues raised has been about some terms having a specific meaning with health or social care with potentially different definitions for the same term. Do any of the section or element names fall into this category?

16. The following came up in the workshop – do we want to include these?

• A record of birth parents
• Status of relationships, e.g. with father
• History of relationships, e.g. when did people become foster parents?

17. Should we record reasonable adjustments (this has been raised in relation to social care and mental health)?

Questions related to specific sections

Patient demographics

18. Do we need to be able to capture a temporary residence, e.g. if someone is temporarily in a nursing home? Relates to end of life wishes about where someone wants to die.

19. Should we add patient activation status?

Personal contacts

20. Should we add in a comments field so that information about why a personal contact is important can be recorded?

Problems and issues and diagnosis

21. Problems and issues and diagnoses are currently separate sections – do we need both sections in the standard?

Disabilities section – potential new section

22. Is a section for disability required to support the recording and sharing of disability information, e.g. learning difficulties (this was raised by social care and mental health professionals) or would this be covered in either individual requirements (mobility and cognitive needs) or through problems/issues & diagnoses?

23. There is a requirement to support reasonable adjustments – is this a flag or is more information required?

Pregnancy status – new section

24. Does this section support the requirement to flag whether someone is pregnant?

25. Is the section name correct – pregnancy status – or should it be called something else?

Social Context

26. Do we need to include primary support reason (from social care systems)?

27. Does equipment provided to the service user, e.g. wheel chair ramp need to be recorded? Where should it be recorded? Could it be recorded under devices or under services and care (in social context)?

28. Is the services and care element within social context sufficient for recording the social care services a person receives?

29. We will incorporate the new standards developed in Birmingham which uses AUDIT C for alcohol intake – this standard has been previously approved and is likely to be adopted by the PRSB. Is there an equivalent assessment for drug use?

Assessment scales (changed to assessments)

30. We have added in the following elements to capture output from social care and mental health: a. An assessment element to capture narrative assessments (for social care and mental health) b. Assessment summary to capture a summary of an assessment c. Formulation to provide a diagnostic summary of mental health assessments

Do we also need to include an element for assessment type?

31. Would the Frailty Index: electronic Frailty Index (eFI) used by GP / Clinical Frailty Score used by clinicians be covered by assessment scales?

Future Appointments

32. Does this allow the capture of social care appointments (e.g. someone visiting the person to provide domiciliary care or to undertake a care needs assessment)?

Questions from the second expert review group meeting (16 May 2019)

1. Retaining clinical context of the information has been raised as a clinical safety risk. The core information standard uses the following:

   • Performing professional (the professional linked to the record entry)
   • Date (the date of the activity day/month/year, e.g. the date that the procedure took place)
   • Location (the organisation/institution at which the activity took place, e.g. the hospital at which the procedure took place)

We have reviewed this section by section and have used “performing professional” to mean different things in different sections. In some sections we have also added person completing the record where the performing professional may be different from the person that recorded the information. Does this approach make sense?

2. An additional concern raised, related to question three above, is that the information model does not articulate the links between the different types of information. For example, a diagnosis would be linked to an encounter/consultation and a diagnosis may be linked to an investigation result or an assessment. We are proposing that in the information guidance we include reference to the fact that all links between information need to be retained and that this is addressed in the logical data model work.

3. The principles we have used to define whether a section, cluster or element is mandatory, required or optional are as follows:

• Minimise the number of mandatory data items.
• The only mandatory sections are patient demographics and GP practice.
• All other sections are required because if the information is there it expected to be part of the record.
• At element level some items are mandatory all others are required.

We have now implemented this approach in the model and reviewed changes to MRO inherited from existing standards with clinical advisors. Do you support this approach in release one?

4. We have recognised the need to review descriptions and, in some instances, amend the description used in the standard the element was taken from. An example being we have amended the use of patient to person. Are you happy with this approach?

5. The last expert group review recognised a tension between generic and specific sections in the information model, an example being the discussion on information contained in the pregnancy section and the recognition pregnancy was a condition. We have however left the pregnancy section in the model as an exception to the generic approach as due date is not covered elsewhere in the information standard. Are you happy with this exception?

6. We have removed the history section from the information model on the basis that medical and mental health history would be included in problem lists, surgical history would be included in procedures. We are unclear however whether obstetric history, e.g. history of stillbirth and whether the pregnancy outcome resulted in a live birth would be recorded in “problem lists”?

7. We have been made aware of a specific concern about merging diagnosis and problems and issues into a single section - problem lists – which was the approach taken for the maternity record. What are your views on this?

8. We are not proposing a separate disabilities section because we believe that information contained in the generic problem list section should accommodate disabilities information. Support for people with disabilities would be included in the individual requirements section – would this section cover reasonable adjustments? Are you happy with this approach?

9. We have removed the developmental skills section because we believe that information would be covered under observations. Are you happy with this approach?

10. We have removed the person expectations, concerns and wishes section as we believe the information contained in it is duplicated in the ‘about me’ section of the Core Information Standard. Are you happy with this approach?

11. We have retained a correspondence section and plan to include metadata based on the OneLondon definition of correspondence metadata. We propose to take a similar approach to documents and images/scans. These sections are ‘catch alls’ for where correspondence, documents and images are not specifically referenced in other sections. Are you happy with this approach?

12. We are assuming that results of genetic testing could be supported by the investigation results section. Is that correct?

13. There have been many queries about what consent needs to be captured for sharing information but also other types of consent. We have three types of consent defined in the core information standard (as below). Are these required in the core information standard?

• Consent for information sharing
• Consent relating to a child
• Consent for treatment

14. Plans are included in a number of places in the model. Are all these sections required? Where would birth plans, EoL plans, MH crisis care plans be covered?:

• Plans and requested actions
• Care and support plans
• Contingency plans
• Additional supporting plans.