Community Nursing Care Programme Development



eCHIP / Community Nursing Network

Community Nursing

Care Programme Development:

a Formative Evaluation

|Version |Date |Summary of Changes |

|1.0 |12 Aug 2004 | |

|1.1 |18 Dec 2004 |Includes input from CNNet workshop, 6 Dec 2004, |

| | |and eCHIP Board members. |

|1.2 |15 Jan 2005 |Scenario material from CNNet meeting 14 Jan 2004 |

|1.3 |17 Jan 2005 |Comments from Alison Forbes, Kathy Dallest |

|1.4 |19 Jan 2005 |Final draft for eCHIP Project Board |

Author:

Derek Hoy

Research Fellow

School of Nursing, Midwifery and Community Health

Glasgow Caledonian University

d.hoy@gcal.ac.uk

Table of Contents

1 Executive Summary 3

2 Introduction 4

3 Method 4

3.1 Review of Requirements and Context of Use 4

3.2 Review of Care Programmes 5

3.3 Review of Relevant National and International Standards 5

4 Findings 6

4.1 Describing Community Nursing 6

4.2 The Draft Care Programmes 6

4.2.1 Overlap of descriptions 6

4.2.2 Generic and specific descriptions 7

4.2.3 Care Programmes and the Clinical Record 7

4.2.4 Care Programmes and Secondary Analysis 8

4.2.5 Conclusions 8

5 Recommendations 8

5.1 Divide Community Nursing Information Standards Into Two Streams:

Service Level and Care Planning 8

5.2 Redevelop Care Programmes to Support Service Level Information 9

5.3 Develop Community Information Standards for the Clinical Record 9

6 Conclusions 10

Appendix A. Scenario used in examples 11

Appendix B. A Worked Example of the Recommended Approach 11

Appendix C. Model of Recommended Approach 13

Appendix D. Draft Care Programmes 14

Appendix E. Dissection of Care Programme Descriptions 15

Appendix F. Site Visits 16

Appendix G. Report of the Second CNNet Workshop on Clinical Information Standards Development 17

Appendix H. Glossary 20

Appendix I. References 21

Executive Summary

Annual statistics for Community Nursing in Scotland have not been routinely published since 2000, and the information that is available does not cover the whole country. This report describes Community Nursing information in terms of three levels: service level, care planning, and activity data. National information has focussed on activity data, which gives poor quality information, saying nothing about why care is given and to what effect.

eCHIP was set up by the Scottish Executive in March 2002 to address these problems as part of its remit. Support for the Community Nursing Network (CNNet) has been part of eCHIP. In 2004, the CNNet produced a draft list of 44 Care Programmes. These were intended to support the collection of service level and care planning information.

This project was commissioned by eCHIP in 2004 to provide a formative evaluation of the Care Programme development. The project findings are based on workshops with CNNet in March and December 2004; interviews with Community Information staff at several sites; and interviews with ISD staff working on national information and dataset development.

The evidence strongly suggests that the draft Care Programmes can not reasonably meet all expectations. The recommendations propose re-developing Care Programmes to meet the requirement for service level information, and meeting the need for care plan level data by developing national standard 'templates' to be used as the basis for the Community Nursing record.

This work should be done as part of the National Clinical Dataset Development Project in ISD, but it is strongly recommended that project management structures reflect the clinical ownership that will be a critical success factor.

Introduction

The Community Nursing Network (CNNet) is supported by the NHS in Scotland as a key stakeholder group for development of national information standards. It comprises one or more Link Members from each area of Scotland and meets on a two to three monthly basis. (See )

'Community nursing' is used as in inclusive term, to include District Nurses, Health Visitors, Practice Nurses, School Nurses and any other people working in a community/primary care setting in a nursing role.

Since 2000, ISD has stopped publishing annual statistics on Community Nursing activity and only provides them on request. Not all areas of Scotland now return such data so it is incomplete. A recent CNNet survey found that many community nurses record the same clinical data on multiple information systems on a daily basis. At a local and national level, community information is in a poor way.

The electronic Community Health Information Project (eCHIP), was set up by the Scottish Executive in March 2002 to address the problem of poor quality community information. Support for CNNet has been part of eCHIP.

In late 2003, a CNNet Working Group produced a functional reference model for the Electronic Patient Record (EPR) integrating Community Nursing information and a draft set of 44 Care Programmes (see Appendix D). This followed an earlier information needs analysis of Community Nursing and subsequent development of a draft high level functional specification and agreed core, summary and ‘specialist’ levels of information.

This work was part of the eCHIP project. In parallel, an Allied Health Professional (AHP) project has also been developing Care Programmes as part of eCHIP. (See )

In 2004, eCHIP commissioned the project which is the subject of this report, initially to validate the draft Community Nursing Care Programmes. By agreement with the Project Board, this was changed to become a formative evaluation.

A glossary covering terms and acronyms used in this report is in Appendix H.

Method

1 Review of Requirements and Context of Use

A workshop was arranged by CNNet in March 2004 to initiate this project as a validation exercise. It was following this that the remit was changed to a formative evaluation because the requirements for Care Programmes were not clearly enough described to allow formal validation.

Following this, the first step was to arrange visits to sites where there was experience and/or active development of Community Nursing information systems. The sites visited are listed in Appendix F.

Interviews with staff during these visits provided two main inputs to the evaluation:

• the context of local information systems within which Care Programmes would have to function; and

• experience of using a Care Package/Care Aim approach based on the EPPIC work, which might be how Care Programmes would be used if they were to structure the community nursing record.

A second CNNet workshop was held in December 2004 to test the findings of this evaluation and clarify the recommendations. A report on this workshop is in Appendix G.

2 Review of Care Programmes

The draft Care Programmes were reviewed using two main criteria:

• were they consistent in what they described?

• were they consistent in their level of detail?

This was done using 'dissection', an approach which helps clarify the meaning in clinical statements. Dissecting the list of Care Programme descriptions meant looking for patterns in them. For example:

• enabling positive parenting

• promoting child health

• supporting child protection

These descriptions all begin with a verb, as highlighted. The patterns in the descriptions were tested for consistency with that used by ISO[i]:

of relating to

For example: enabling healthy lifestyle (of a person) with Coronary Heart Disease.

All 44 descriptions were consistent with this dissection. See Appendix E for the results of this process.

The benefits of this dissection process are that it:

• clarifies the meaning of similar descriptions;

• allows more descriptions to be generated as required, by combining the parts in different ways;

• helps analysis, by unlocking specific concepts buried in the clinical statement eg:

‘all services for children’ - subject = ‘child’

‘cancer services’ – health issue = ‘cancer’

‘rehabilitation’ – affecting = ‘rehabilitation

• supports rules for care systems to automatically select appropriate Care Programmes;

• is the approach used by AHP work;

• is the basis of ISO/CEN standards.

3 Review of Relevant National and International Standards

In addition, there were interviews with staff in ISD involved in the National Clinical Dataset Development Project, terminology and coding, and national statistics.

Other relevant international standards were reviewed. Of particular interest is the work on 'archetypes'- templates for fragments of the clinical record.[ii] Over recent years, there has been a growing realisation in the informatics community that terminology is not sufficient to produce good clinical systems. In the UK, we have experience with the failure of the Clinical Terms Project (Read v3) to make an impact on systems. The expectations were high that simply developing it would enable the Electronic Patient Record (EPR). However, the terms are just the nuts and bolts of the EPR, and need to be assembled into useful structures to be used. International standards work is now supporting this requirement.

Findings

1 Describing Community Nursing

A scenario (selected by CNNet) will be used as an example through the rest of this report. It is described in Appendix A. In this scenario, a Health Visitor visits a woman as part of a post-natal service, makes an assessment, and identifies some problems. Care is planned to address these problems, and delivered.

A simple three-level model of Community Nursing is:

• initial contact with the patient as part of a service;

• assessment and planning of care;

• care activities, referrals etc.

Further contact allows review and re-assessment. 'Patient' here is shorthand for the recipient of care- an individual, a carer, or a group, eg family, clinic or client group.

This simple three-level model of Community Nursing (service level, care planning, care activity) has proved surprisingly useful in considering the findings of this report, and will be used to set out the recommendations below.

Community Nursing information has been based almost entirely at the bottom level of the model- activity reporting. This gives very poor quality information about why care is being given, and to what effect. It is also professionally reviled, as it 'reduces nursing to tasks'. It provides unreliable and misleading information regarding skill-mix and workload by hiding the process that leads up to these care activities. This largely explains why national statistics on Community Nursing have fallen into disrepute.

Care Programmes are intended to describe the top two levels (service and care planning) in a way that allows them to be linked with activity.

2 The Draft Care Programmes

The term 'Care Programme' came from the CEN European pre-Standard 'CONTSYS: System of concepts to support continuity of care'. [iii] Work from the Australian Department of Veterans' Affairs Community Nursing Services was also influential.[iv]

The draft set of 44 Care Programmes is listed in Appendix D. The following sections discuss the issues identified with this list.

1 Overlap of descriptions

Given our example of post-natal care (in Appendix A), which Care Programme descriptions might be applied by the Health Visitor?

Some are very generic and might apply in most situations, eg Assessment & identification of need and health promotion.

A more appropriate one would be Promoting Postnatal Maternal Health and Wellbeing. A number of others might be relevant:

• Supporting Continence - Urinary Dysfunction

• Enabling Mental Wellbeing

• Enabling Positive Parenting

• Promoting Child Health

• Supporting family functioning

Other specific problems might be identified:

• Enabling Smoking cessation

• Enabling Weight Control

The chances of one and only one Care Programme being appropriate in many clinical situations seems remote. This becomes very important if we want to use Care Programmes directly in the clinical record, and for secondary analysis. Both issues are discussed below.

2 Generic and specific descriptions

As noted above, some Care Programme descriptions are very generic, for example:

• enabling carer health and wellbeing;

• enabling positive parenting;

• promoting child health; and

• promoting older peoples health and safety.

Others are more specific, for example:

• enabling smoking cessation;

• promoting tissue viability after leg ulcer;

• restoring tissue viability (promote wound healing)- leg ulcer; and

• supporting continence - bowel dysfunction.

The more generic descriptions will be meaningless in aggregated data analysis- showing that 63% of District Nursing activity related to promoting older people's health and safety is not likely to have much value.

The more specific descriptions may more accurately describe the care being given, but at the expense of not describing the full nature of the service being offered.

Using our three level model above, we can say that the generic and specific Care Programmes address different things- either the general service being provided, or the more specific care that is part of that service.

3 Care Programmes and the Clinical Record

Although it is not explicitly stated that Care Programmes will be the basis of the Community Nursing record, it is implied by the inclusion of start and end dates in the CNNet Summary Dataset. This suggests that on contact with a patient, the Community Nurse would select one or more appropriate Care Programmes, 'start' them, then select assessments for each and attach care plans to each.

This is very unlikely to work due to the overlap of Care Programmes. A Care Programme may relate to more than one care plan, and a care plan may relate to more than one Care Programme. Local systems would have to manage the resulting complexity and reporting.

Also, sites that have used a similar approach with Care Packages report that nurses often need to assign activity which does not fit an existing package. They are more likely to go ahead and assign it to an inappropriate package rather than go to the time and trouble of opening a new one.

In addition, the more generic Care Programmes are far too inclusive to be useful in structuring the record- any content would be appropriate.

4 Care Programmes and Secondary Analysis

The issue of Care Programmes being a mix of very generic and more specific descriptions results in this double whammy: the generic descriptions are less meaningful in terms of care given, while the more specific descriptions do not describe the overall service given. Combining both gives rise to double counting, as more specific descriptions may be included in the more generic.

5 Conclusions

The expectation that Care Programmes can meet all the requirements described above is unrealistic. The recommendations will focus on how the different levels in our model (service, care planning, activity) can be integrated and supported by a combination of Care Programmes and other information tools.

Recommendations

1 Divide Community Nursing Information Standards Into Two Streams: Service Level and Care Planning

A worked example of the recommendation below is included in Appendix B.

Care Programmes should be used to describe the 'service' being provided by the practitioner. In the example used in Appendix A this could be 'Post-natal care', or, if required, the more specific 'Post-natal care: Primary Visit'.

More specific Care Programmes can still have a role, but only if they are the extent of the service on offer. For example, 'Supporting Continence' would be appropriate for a Continence Nurse, but not for a District Nurse who is giving continence care as part of a more general service.

The Care Programme can be attached to the initial assessment, which allows it to be recorded in a way that is meaningful to the nurse.

Following this initial assessment, more specific assessment is done for identified issues. These assessments should be based on standardised forms, produced as national Clinical Information Standards. CNNet members suggest that care plans can also be considered for national standards work.

The record is therefore based on consistent standards, helping with coding, retrieval and analysis.

Clinical data required for secondary analysis can be extracted into a 'summary data' area, where it is more readily accessible to systems which will harvest it.

Secondary analysis can relate service level information relevant for skill-mix and other service management issues with clinical information describing the health issues identified and their management. Activity data can be collected if required- it is much easier to assign to care plans than to service level data.

2 Redevelop Care Programmes to Support Service Level Information

Given that the role of Care Programmes is simpler and clearer, the user requirements for service level information should be clarified. They are likely to be in the area of skill-mix, education and workload.

The draft list of Care Programmes should be reviewed to focus on service-level information, and piloted. In particular, their role as an attribute of the initial assessment for a given service should be tested.

By using Care Programmes in this way, they can be implemented in a flexible and incremental manner, as requirements are identified and change over time with policy change. If Care Programmes were used to structure the record, then changes would have effects on local information systems and recording practice, making changes much more difficult and costly.

This service level is the best place to make the connection with Clinical Pathways (the Patient Journey), and development of Care Programmes should take that into account, eg the Care Programme would identify this as being part of a Coronary Heart Disease (CHD) pathway.

It should be noted that the real strength of the proposal is being able link this service level data with more specific care information on an ad hoc basis. So, identifying some care as being part of a CHD pathway is useful in linking the steps on the patient journey, but provides limited information. The next recommendation concerns the standards that would make the link to clinical detail.

3 Develop Community Information Standards for the Clinical Record

Community Information standards for the clinical record will support communication, access and clinical data analysis. The proposal is to

extend the idea of standardised clinical information templates (forms) as the basis for the Community Nursing record. (See Appendix B and Appendix C for suggested approach)

Structured data entry is increasingly common, for example in clinical pathways documentation, ‘recording by exception’, and SPICE Care Management screens.

Standardisation, particularly of assessment, is now professionally acceptable. This view was endorsed by CNNet at the workshop in December 2004 (see Appendix G). The workshop concluded that national standard clinical forms or templates would:

• be professionally acceptable and desirable;

• save local development effort;

• improve the quality of recording;

• offer a route for improving the evidence-base for care;

• enable the development of decision support tools; and

• support the National Clinical Dataset work based at ISD, resulting in a national library of ‘templates’ which could be available for use in local information systems.

The recommendation is for a feasibility study of Community Nursing National Standard ‘clinical templates’, in the first instance for assessment, and secondly for care plans.

The benefits are summarised as:

• save time and effort, both in development and implementation of local information systems;

• more consistent quality of clinical information;

• greater compatibility, both in communicating record data between systems and re-using assessment components;

• better coding quality and consistency, particularly with the implementation of SNOMED/CT being imminent; and

• stable target for spin-off development, eg SPICE decision support tools, patient information resources, and clinical indicators.

In addition, national infrastructure is moving into place to support this with the National Clinical Datasets Development Programme and the Generic Clinical System toolset.

A feasibility study should address the risks of this work, in particular, whether most clinical recording can be covered by standardised forms, and whether they would restrict professional freedom.

Given the work on Single Shared Assessment (SSA), the increasing evidence of local standardisation, and the drive to link data sets with guidelines/protocols, it seems a good time to initiate this work. A critical success factor is professional ownership: project management structures must reflect the large group of stakeholders in this work, and foster the necessary clinical ownership. The strong support of CNNet is an excellent start.

Conclusions

The recommendations are summarised below:

1. Divide Community Nursing information standards into two streams: service level and care planning.

2. Redevelop Care Programmes to support service level information.

3. The user requirements for service level information should be clarified.

4. The draft list of Care Programmes should be reviewed to focus on service-level information, and piloted.

5. Develop Community Information standards for the clinical record.

6. Further work, with the national Clinical Dataset Development Programme in ISD, should test the feasibility of a national library of ‘clinical templates’ for Community Nursing in Scotland.

7. Project management structures must reflect the large group of stakeholders in this work, and, in particular, foster the necessary clinical ownership.

A. Scenario used in examples

Jean Smith is a 23 year old woman who gave birth to her first child 11 days ago. The delivery required forceps and a urinary catheter was required following this. Since removal of the catheter and return home, Jean has had urinary incontinence. She is having problems breast feeding and is also feeling very low.

A Health Visitor, Angie Blythe, is making a 'Primary Visit' to Jean's home. An initial assessment will include the mother and child, Jean's partner, the home and family situation. Some information is available from the hospital discharge letter and the Community Midwife, who has visited over the first 10 days.

The assessment identifies the problems relating to continence, mood and feeding. More specific assessments are made for these problems and care is planned. Examples of care activity for the continence problem are: continence garments, pelvic floor exercises, and referral to physiotherapy.

B. A Worked Example of the Recommended Approach

|Clinical Scenario |Information System |National Standards |

|The Health Visitor, Angie Blythe, visits the home of |'Initial assessment' is selected, and |Data Dictionary holds list of Care |

|Jean Smith. After talking to Jean and seeing the baby,|'Post-Natal' is selected from a list of|Programmes covering Community Nursing |

|she opens a new assessment, selecting 'Post-natal |options, derived from ISD Data |services in Scotland. 'Post-natal care'|

|care: primary visit' from the list on her computer |Dictionary. |is on list. |

|screen. |Assessment form appears on screen for | |

| |completion. | |

|Angie completes the assessment, and identifies some |Forms are downloaded from the national |National standard library of assessment|

|issues in Jean's mood, the continence problem and a |library, and customised in local system|forms and care templates is managed by |

|problem breast feeding. From the list of focussed |(except for any mandatory sections |ISD Dataset Development team. |

|assessments, she first selects a continence assessment|which will be unchanged). | |

|and completes it. A related care plan is available, |Health Visitor selects forms for | |

|and she works through it with Jean, selecting the |relevant issues/problems and completes | |

|appropriate care actions: arranging continence |the relevant parts. | |

|garments, teaching Jean pelvic floor exercises, and |Other non-standard data is added as | |

|making a referral for physiotherapy. Finally they |required. | |

|agree realistic goals for Jean, and decide to review | | |

|things in a week's time. | | |

|Together they work through the same process for the |Local system supports practitioner with|National standard forms provided a |

|mood and feeding problems. Angie prints out a summary |decision support tools, and holds |target for development of health |

|of the care plan, some information leaflets, and |printable resource materials. |education materials and |

|leaves. | |decision-support tools. |

|That night, back at base, the Community Information |Developing a rules database is helped |Standard rules are available, |

|System runs an automatic trawl through the day's |by having standards- coding and |especially those required for national |

|clinical record data. Using a database of rules, it |structures are consistent and |data collection, eg for clinical |

|identifies a new 'Post-natal care: primary visit' data|predictable. |indicators, national priorities, |

|item, and records it in Jean Smith's summary data. | |targets. |

|Three problems are identified and also flagged in the | | |

|summary data: urinary incontinence, post-natal | | |

|depression, and unsatisfactory breast feeding. | | |

|A national clinical indicator relating to breast | | |

|feeding is recognised, and the relevant data is | | |

|flagged. | | |

|A Health Visitor contact of 60 minutes is also | | |

|recorded. | | |

|At a monthly meeting of Community Nursing Staff for |The rules database is updated for this |Standards applied nationally allow |

|this patch, Angie comments that over the last few |new requirement, and new data is |comparison across localities. |

|months she has seen two women with continence problems|collected in the summary data area. |CHI enables linkage across systems. |

|following forceps delivery. She asks if others have | | |

|noticed any increase, and two other staff have had | | |

|patients with the same problem over the last six | | |

|months. They decide to audit the incidence of | | |

|continence problems in patients receiving the | | |

|post-natal service. Information Services staff help | | |

|set up the audit, so that periodic trawls through | | |

|summary data in the active patient records will pick | | |

|up and record the relevant data items. They can | | |

|investigate a joint audit with the Maternity Service | | |

|by using CHI numbers on the data to link with the | | |

|Maternity System for details of delivery. | | |

C. Model of Recommended Approach

D. Draft Care Programmes

Source: FINAL DRAFT Care Programmes V1.4 - 25 September 2003

• Assessment & identification of need and health promotion

• Enabling Carer Health and Wellbeing

• Enabling Daily living skills with Arthritis

• Enabling Daily living skills with COPD

• Enabling Daily living skills with Motor-neurone Disease (Promoting Independence)

• Enabling Daily living skills with MS

• Enabling Healthy Lifestyle with CHD

• Enabling Healthy Lifestyle (and self care)with Diabetes

• Enabling Mental Wellbeing

• Enabling Patient understanding & decision making – Cancer

• Enabling Positive Parenting

• Enabling self care with Asthma

• Enabling self care with Diabetes

• Enabling Smoking cessation

• Enabling Weight Control

• Promoting Antenatal Health and Wellbeing

• Promoting Child Health

• Promoting Health with Pernicious Anaemia

• Promoting Men's Health

• Promoting Older Peoples Health and Safety

• Promoting Postnatal Maternal Health and Wellbeing

• Promoting Pressure ulcer Prevention

• Promoting tissue viability after Leg Ulcer

• Promoting tissue viability after Pressure sore

• Promoting Travel Health

• Promoting Women’s Health

• Promoting Young person’s Health

• Rehabilitation of Daily Living skills after stroke

• Restoring tissue viability (Promote Wound healing)- Leg Ulcer

• Restoring tissue viability – surgical wound

• Restoring tissue viability – traumatic wound

• Restoring tissue viability (Promote wound healing) - Foot Ulcer

• Restoring tissue viability -Pressure ulcer

• Supporting Cancer chemotherapy

• Supporting Child at Risk

• Supporting Child protection

• Supporting Continence – Bowel Dysfunction

• Supporting Continence – Urinary Dysfunction

• Supporting family functioning

• Supporting Management of Diabetes

• Supporting Older Person at Risk

• Supporting Palliative Care (comfort) – Cancer

• Supporting Palliative Care (comfort) – Renal disease

• Supporting Palliative Care (comfort) – Respiratory Disease

E. Dissection of Care Programme Descriptions

Dissections used the pattern in ISO Work Item 1804: "Integration of Reference Terminology Model for Nursing".1

of relating to

|affecting |state |subject |health issue |

|assessment |antenatal health |carer |arthritis |

|enabling |at risk |child |asthma |

|promoting |continence |client |bowel dysfunction |

|rehabilitating |daily living skills |family |cancer |

|restoring |decision making |man |CHD |

|supporting |health and safety |old person |chemotherapy |

| |health needs |parent |COPD |

| |healthy lifestyle |woman |diabetes |

| |mental well-being |young person |foot ulcer |

| |parenting | |health |

| |postnatal health | |leg ulcer |

| |self care | |motor-neurone disease |

| |smoking | |multiple sclerosis |

| |tissue viability | |palliative care |

| |travel health | |pernicious anaemia |

| |understanding | |pregnancy |

| |weight control | |pressure sore |

| | | |renal disease |

| | | |respiratory disease |

| | | |stroke |

| | | |surgical wound |

| | | |traumatic wound |

| | | |urinary dysfunction |

F. Site Visits

• NHS Borders Community Services

• NHS Tayside Community Services

• NHS Dumfries and Galloway Community Services

• NHS Lothian Community Services- West Lothian and Lothian, shortly before information services were combined.

• NHS Greater Glasgow Community Services- visit here was cancelled and could not be rearranged within the timescale of the project.

• NHS Renfrewshire & Inverclyde Community Services

G. Report of the Second CNNet Workshop on

Clinical Information Standards Development

Background and workshop description

The Community Nursing Network (CNNet) is supported by the NHS in Scotland as a key stakeholder group for development of national information standards. It comprises one or more Link Members from each area and meets on a two to three monthly basis. (See )

In late 2003, a CNNet Working Group produced a functional reference model for EPRs integrating community nursing information and a draft set of 44 Care Programmes. This followed an earlier information needs analysis of community nursing and subsequent development of a draft high level functional specification and agreed core, summary and ‘specialist’ levels of information.

A first workshop on Clinical Information Standards Development was held in March 2004 and marked the start of a Formative Evaluation of these Care Programmes. This second workshop discussed the findings of that evaluation, and has endorsed the proposal outlined below to take this work forward.

The workshop took place over two days on 6 and 7 December 2004 in Glasgow. It was attended by 25 people representing all NHS Board areas in Scotland, ISD and the SEHD. It was supported by the SEHD eCHIP project.

Outcomes

Some outcomes related to the functioning of CNNet itself, and are not the subject of this report. The following relates only to the area of Clinical Information Standards Development.

Two options were considered:

• Using Care Programmes as the basis for planning, recording and analysing care; and

• Using Care Programmes for planning and subsequent secondary analysis of care data, and clinical forms (templates) for developing standards for the care record.

Option 1 Using Care Programmes as the basis for planning, recording and analysing care.

This option was rejected on the recommendation of the Formative Evaluation. Care Programmes represent a mix of general and specific descriptions of service, and present problems when used to structure the record. They are also likely to be of value only for specific (though important) purposes, and not for general-purpose national statistics.

Option 2 Using Care Programmes for planning and subsequent secondary analysis of care data, and clinical forms (templates) for developing standards for the care record.

This option was endorsed by the workshop. Following discussion, the shape of such an option was described using the diagram below.

The key areas marked on the diagram are:

Care Programmes

Care Programmes are descriptions of clinical services. Some are focused and very specific, eg “Enabling Smoking Cessation”, while others are very general, eg “Assessment & identification of need and health promotion”.

They are expected to play a role in planning care, and in secondary analysis for specific purposes.

National Standard Forms for clinical data entry

The workshop concluded that these would:

• be professionally acceptable and desirable;

• save local development effort;

• improve the quality of recording;

• offer a route for improving the evidence-base for care;

• enable the development of decision support tools; and

• support the National Clinical Dataset work based at ISD, resulting in a national library of ‘templates’ which could be available for use in local information systems.

National Standard Forms as the basis for the clinical record

The workshop concluded that this would give consistency to the clinical record, which would enable better quality clinical coding. This would support exchange of records and secondary analysis. This would also support the clinical effectiveness agenda by providing a vehicle for getting research into practice.

Use of Summary Data

Summary data would form the basis for secondary analysis. It would be refreshed periodically according to processing rules, and as required to meet national and local information requirements. It would hold a mix of standard and ad hoc data.

Secondary analysis

This covers uses that are not for the purpose of care of the individual subject of the record, and includes local and national requirements. Care Programme data is likely to be of use for some of these requirements, eg skill-mix analysis.

Conclusions

The workshop members were enthusiastic in their support for the proposed approach to clinical information standards development. Discussion produced a number of suggested topics for initial trial of standardised forms:

• continence

• vulnerable children

• leg ulcer management

• functional activities of daily living skills

• carers

• breastfeeding

Opportunities exist for strengthening partnership working with the eCare and Children’s Information programmes to bring benefits for community nursing and ultimately patients.

There are a number of risks involved in the above proposals, and CNNet would support a 12 month Feasibility Study to trial the above methods, including clarifying the role of Care Programmes in service planning and delivery, and prototyping a first set of standardised forms with the ISD Dataset Development team.

H. Glossary

|AHP |Allied Health Professionals, eg physiotherapists, dieticians. A parallel project has also been developing Care |

| |Programmes as part of eCHIP. |

| |See |

|CEN |The European Standards Body, covering all aspects of life, and including healthcare. |

| |See |

|CHI |The NHS Scotland Community Health Index- a unique identifier for people receiving health care in Scotland. |

|CHD |Coronary Heart Disease |

|eCHIP |"The electronic Community Health Information Project (eCHIP), endorsed by SEHD Management Board, in March 2002, |

| |aims to develop an alternative robust and reliable approach to collection and analysis of community health |

| |services information that better meets the needs of both practitioners and policy makers." |

| |See |

|EPPIC |"Effective Purchasing and Providing in the Community". An NHS Scotland project which started in 1994, developing |

| |community information standards. |

|EPR |Electronic Patient Record |

|CNNet |The Community Nursing Network for Scotland. |

| |See |

|ISD |ISD provides Information and Statistics services to NHSScotland. This includes information standards, national |

| |dataset development, and national statistics. |

| |ISD is part of NHS National Services Scotland [formerly known as the Common Services Agency]. See |

| | |

|ISO |International Standards Organisation. |

| |See |

|Secondary uses of |If the primary purpose of clinical information is for hands-on care, secondary uses would be for management, |

|information |research, audit etc. It generally implies aggregation of data- adding each patient's data to that of others to |

| |look at groups or populations. |

|SEHD |Scottish Executive Health Department |

|SNOMED-CT |"SNOMED-Clinical Terms (SNOMED-CT) is a computerised clinical language designed by clinicans to provide a single |

| |unified terminology for use in acute and primary care. It will be an underpinning feature of the development of |

| |Electronic Patient Records and Electronic Health Records in Scotland by facilitating integration of computerised |

| |clinical information." |

| |See |

| |National_data_standards/snomed.htm |

|SPICE |Scottish Programme For Improving Clinical Effectiveness in Primary Care |

| |See |

|SSA |Single Shared Assessment (SSA) covering health and social services. |

I. References

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[i] ISO Work Item 1804: "Integration of Reference Terminology Model for Nursing".

[ii] Beale T, Heard S (eds) 2003. Archetype Definitions and Principles. The openEHR Foundation. URL:

principles/archetype_principles.pdf

[iii] CEN 'CONTSYS: System of concepts to support continuity of care'. CEN/TC 251/WGII

(Terminology and Knowledge Bases), European pre-Standard (prEN 13940:2004). Revision 0.2.

[iv] Australian Department of Veterans' Affairs Community Nursing,

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