Scottish Cancer Taskforce: National Cancer Quality Steering Group Cancer Clinical Audit

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1 Scottish Cancer Taskforce: National Cancer Quality Steering Group Cancer Clinical Audit National Cancer Clinical Audit: Baseline Survey Report (May 09) Purpose: The purpose of this paper is to provide the Scottish Cancer Taskforce with an overview of the current position with regard to Cancer Clinical Audit across NHS Scotland. Background: In order to establish the baseline position and to help inform the work of the National Cancer Quality Steering Group, two separate questionnaires were sent to Regional Cancer Network Managers and MCN Clinical Leads. Section of this report provides a high level summary of the information received from the Regional Cancer Networks in relation to the data collected, data quality, data analysis and reporting, and the resources that are currently aligned to support clinical audit. Further more detailed information has been made available to the National Cancer Quality Steering Group and underpins this report. Section 2 of this report summarises the key themes identified in responses received from MCN Clinical Leads regarding utilisation of clinical audit data to improve patient care.. Summary of baseline information provided by Regional Cancer Networks To date, information has been provided for all NHS Boards except for NHS Tayside. This information is awaited from NOSCAN.. Clinical audit data currently being collected Detailed information relating to the collection of cancer clinical audit data in line with nationally agreed cancer data sets has been provided by NHS Boards. This provides insight into the variable evolution of data collection over the time period From this information it is clear that clinical audit is better established in breast, colorectal and lung cancer where complete national minimum data sets are collected in nearly all NHS Boards. For newer, more recently established, cancer audits, such as urology, upper GI and head & neck cancers, while there is evidence of data being collected, this is often incomplete. The main reason cited for this is the lack of human resource to collect data and the impact that the collection of cancer waiting times data has had on clinical audit. Similarly, due to resource constraints, registration data only is collected for some tumour types e.g. some skin cancers and haematological malignancies. Notably, only HPB audit data is collected for a national MCN with the national sarcoma and neuro-oncology MCNs not currently collecting any data, despite having an agreed national dataset and developed database. Table provides an overview of the current 2009 position regarding data collection by tumour type across all NHS Boards. It should be noted that current tumour specific dataset predominantly focus on secondary care aspects of the patient pathway with little attention given to primary care elements. Cancer specific audits within primary care are limited at present and further consideration requires to be given to how this is best addressed.

2 Table : Data currently being collected by Health Board and tumour type May 2009 Greater Glasgow & Clyde Forth Valley Lanarkshire Ayrshire & Arran NESCAG Grampian Orkney Shetland Highland & Western Isles Tayside Lothian Fife Borders Dumfries & Galloway Breast Colorectal Ovarian Cervix X No national data set Endometrium X No national data set Melanoma Skin: SCC X X X X Skin: BCC No national data set X X X X X X X Lung Urology Upper GI/HPB Head & Neck X start late 09 X start late 09 X start late 09 until mid 09 Lymphoma Acute Leuk CML Plasma Cell Dyscrasias Lymphoproliferative Myelodysplastic Sarcoma X X X X X X X X X X Neurological X X X X X X X X X X Full national dataset collected Partial data collection (not full data set but more than waiting time fields) X No data collected Waiting times fields only collected Registration data only Some data collected locally although no nationally agreed data set/data definitions X X 2

3 .2 Additional regional data items collected National minimum core data sets currently range from 62 (SCC) to 200 (urological cancers, CML, upper GI/HPB) data fields. In some instances these have been supplemented by additional data items agreed by regional MCN clinicians. This practice is more prevalent in WoSCAN where an additional 63 items are collected for breast cancer and 43 for lung cancer. For other tumour types across regions additional regional items range from for colorectal in SCAN to 62 for colorectal in WoSCAN. The rationale for these additional items is to provide more detailed context for analysis and clinicians request for additional data items to be collected, including follow-up data. Some additional items have also been included to enable performance against new NHS Quality Improvement Scotland standards to be measured (review of national datasets being undertaken by ISD to include data items to enable measurement against revised standards). Within WoSCAN work has been initiated to review and reduce, where appropriate, regional data items for breast and lung cancers..3 Data quality Formal whole record quality assurance of data was last undertaken in 2002/03 for breast cancer and colorectal cancer, and in 2003/04 for ovarian cancer. This programme of work has been significantly impacted by cancer waiting times and increased pressure on ISD resource. In recent years greater attention has been given to quality assuring waiting times fields only. An informal whole record quality assurance of lymphoma data and melanoma data has been undertaken in 2006 and 2009 respectively..4 Data analysis In the main the latest cohort of data that have been analysed is 2007 data for a number of tumour types. The process for data analysis and reporting varies across Regional Networks and is resource dependant. For example, in SCAN to promote local clinical ownership of results, analysis is undertaken predominantly at a local Board level with results collated by SCAN for comparative review by regional tumour specific groups or national meetings. In NOSCAN analysis is undertaken at a local level and presented locally or at national meetings where data is submitted to ISD. In WoSCAN analysis for regional reporting is undertaken by the Regional Network Office, enabling local staff to focus on data collection and interim local data analysis in conjunction with their clinical teams..5 Data reporting Networks with more established clinical audit are increasingly moving toward national comparative reporting. As this evolves a more robust process and governance framework requires to be developed to support this. For those Networks at an earlier stage of development regional reporting has been established in both SCAN and WoSCAN. Some Networks routinely submit data to national UK audits e.g. BAUS, LUCADA & BASO. Local audit staff are heavily involved in reporting of quarterly waiting time reports to ISD, which significantly impacts on time available to undertake clinical audit..6 Data collection One of the commitments given in Better Cancer Care was to review audit resource across Scotland and reduce unnecessary duplication. The information provided demonstrates clearly the wide range and level of resource currently being applied to support Cancer Clinical Audit. While it is easy to compare numbers, this information does need to be interpreted with caution as the models that are in place to support audit are dependant on a number of other local processes that support clinical care. Further work is required at a local level to review and potentially realign cancer tracker, audit and MDT coordinator roles and responsibilities. Careful consideration also requires to be given to the potential impact that the loss of fixed term posts would have and the clinical audit support required for National Networks as they can by default not be seen as anyone s responsibility. Table 2 provides an overview of the current level of resource applied to Cancer Audit across NHS Boards. It should be noted that while roles have been split there are some posts that have a dual role e.g. audit/mdt coordinator 0.64 wte for haematological malignancies in Grampian. 3

4 TABLE 2 SCAN Audit Manager Audit Manager Waiting times admin manager Senior Cancer Info Officer Cancer Info Officer Audit Facilitators Audit Assts./support officer Trackers/ MDM Cord Pathway coord / facilitator GG & Clyde Forth Valley Lanarkshire Ayrshire & Arran NESCAG Audit data for islands collected by staff in Grampian Grampian Orkney Shetland Highland & Western Isles Tayside Lothian Fife Borders D&G (Regional post) (IT audit facilitator) (temp) 4.2 wte (temp) (temp) 0.6 (temp) 0.5 (wte post/only part time audit) 4 (temp) (approx, part of posts) MDT Coord 0.3 Info admin 2 Info Asst 2.6 (temp) Clerical 2 (temp) Notes Team that support range of cancer work/ Proj. Some dual roles SCAN audit combine audit for Lothian with network coord & collation of comparative reports. 2 provide admin to TSG Most audit staff also undertake tracking & provide some MDM support SCAN AF (Lothian based) collects melanoma SCC, H&N and Haem Onc NCQSG 09/0 (4sites + 2 sites waits data only) 0.5 ( 3 sites) Melanoma/ SCC reported via WoSCAN Haem Onc currently collected & reported via WoSCAN 4

5 .7 Data capture The need to align data capture with clinical systems and move to capturing data once in real time for multiple purposes is well recognised. At present a mixed economy exists between stand alone Access databases, Access databases linked to local patient administration systems (PAS) for demographic and death data (Lothian), Access databases linked to local PAS with multidisciplinary meeting (MDM) functionality added (Lothian), and the evolving web-based ecase system that is increasingly being used, particularly in WoSCAN and NOSCAN. There are merits in each of these systems; however, none are sustainable long term without further development and investment. Urgent consideration requires to be given to ensuring the sustainability of current systems while development of a long term sustainable system to support cancer audit is pursued. WoSCAN and NOSCAN have prioritised development of ecase and are progressing development work. SCAN has still to confirm their involvement in this development and internal discussions are ongoing. Databases currently in use across NHS Scotland are summarised in Table 3. Table 3: Clinical audit databases currently in use Greater Glasgow & Clyde ACCESS ecase Generic Clinical System Pre 07: breast, All colorectal, urology, upper GI Pre 08: ovarian, endometrium, melanoma, SCC Excel Lanarkshire Forth Valley Ayrshire & Arran Grampian Pre 09: lung, head & neck, lymphoma, acute leuk, CML Ovarian, cervix & endometrium pre GCS Pre 2007 All All All Ovarian, cervix & endometrium 2007 From 07/08 Ovarian, cervix & endometrium may 07 March 08 & March 09 to present Orkney Pre 2007 Breast & colorectal from 2007 Shetland Pre 2007 Breast & colorectal from 2007 Highland Pre 2008 From Western Isles Tayside Lothian Access Upper GI (HPB & OG) Breast Access linked to PAS for demographic and death data: colorectal, ovarian, lung, head & neck, skin (MM & SCC) Planned for neuro & sarcoma when audit resource available Access + MDM functionality & linked to PAS for haem onc, urology Fife Access Access + MDM functionality for haem onc Planned for neuro & sarcoma when audit resource available Borders Access Planned for neuro & sarcoma when audit resource available Dumfries & Galloway Access Ovarian from Jan 08 Haem onc (via WoSCAN) Head & Neck Melanoma Planned for neuro & sarcoma when audit resource available BCC Waiting times data urology, upper GI 5

6 2. Analysis of responses from MCN Clinical Leads In order to help inform the early work of the National Cancer Quality Steering Group a questionnaire was sent out to all MCN Clinical Leads to ascertain how the clinical audit data that is currently being collected is being utilised by MCNs at a local, regional and national level and also get views on how audit processes can be further developed to support this. Questionnaires were sent out by under the signature of Bob Masterton to 30 regional/national MCN Leads. 8 individual responses were received (9 WoSCAN, 5 SCAN and 4 NOSCAN) response rate 60%. In addition a consolidated NoSCAN response Peter King & Peter Gent. The information that follows summarises the key themes identified from the responses that were received. 2. What do you consider to be the key purpose of your Network audit? Where there are agreed national clinical standards the focus was on reporting performance against these standards. Where no such standards exist there is a greater focus on reporting activity data and less consistency of what is reported across Regional Cancer Networks. The negative impact of waiting times reporting on clinical audit was also noted. Themes identified include: - To enable comparative analysis of performance to be undertaken and reported, including activity, performance against agreed standards & guidelines, waiting times, survival, outcomes, equity of care provision etc. - To support the work of tumour specific MCNs and inform prioritisation of service improvement work. - To ensure provision of high quality care and continually drive up quality. - To enable early identification of any areas of concern. - To inform current and future practice and outcomes. - To provide an evidence base to inform resource allocation, prioritising areas where standards are not being met. 2.2 What are the top 5 quality indicators that are analysed and reviewed? Themes identified fall into 6 broad categories: - Referral patterns. - Waiting times. - Outcomes & survival. - Patterns of care and appropriateness of clinical interventions e.g. conservation rates for small breast tumours, surgical resection rates for lung tumours, tumour margins. - Activity data. - MDT management, access to AHP support. 2.3 How frequently does your Network analyse and review the data that is collected? For those Networks that responded (breast, haemato-oncology, skin, gynae, upper GI, HPB, lung, head & neck, colorectal, and primary care) analysis is predominantly undertaken annually with analysis of waiting times being undertaken quarterly. For some Networks there is a clear frustration around lack of adequate resource to support analysis (gynae SCAN) or data to analyse (breast NOSCAN). 2.4 When the data was last reviewed? For those Networks that responded (breast, haemato-oncology, skin, gynae, upper GI, HPB, lung, head & neck, colorectal, and primary care) data was, in the main, last reviewed in 2008 when 2007 cohort of patients was reviewed. This illustrates the time lag between data collection to reporting that currently exists. Some of 6

7 this delay is inevitable and relates to the need to ensure that treatment episodes for all patients included has been completed. The time required for this varies by tumour type. 2.5 How has your Network utilised the audit data that it has collected over the past 5 years? Please list the specific actions taken in response to audit findings. Breast: SCAN reorganisation of new patient clinic, increased surgical capacity, redesign of process of referral for adjuvant therapy to improve waiting times, analysis of mastectomy rates, and change in practice of axillary node sampling. NoSCAN service configuration. Gynae: WoSCAN to support/inform reorganisation of ovarian surgical services. Upper GI: WoSCAN demonstrate variation in MDT availability and discussion of cases at MDT. SCAN changes to endoscopy service, especially specialist services such as EUS that are used by the whole SCAN region. Lung: WoSCAN improve resection rates. NOSCAN to streamline diagnostic pathways. Head & Neck: WoSCAN changes in resection strategies. SCAN change in treatment policy in particular site & stage. Further reduce gaps in radiotherapy treatment. Colorectal: SCAN Review MDT participation. Improve waiting times to CT staging. Identify bottleneck e.g. diagnostic colonoscopies. NOSCAN to streamline diagnostic pathways. Primary Care: WoSCAN review & relaunch of referral guidelines. Education on use of SCI Gateway. Please specify the evidence that demonstrates that practice has changed as a result of any actions taken Breast: SCAN improved waiting times, reduction in mastectomy rates, and reduced incidence of <4 nodes obtained. Gynae: WoSCAN reduction in the number of surgeons operating on ovarian cancers. Pathologists now working to regionally agreed guidelines for reporting. Upper GI: WoSCAN weekly MDTs established in each NHS Board. Increased number of patients discussed at MDTs. SCAN increased compliance with 62 day target. 7

8 Lung: WoSCAN secured regular thoracic surgery input to MDTs. Increase in resection rates. Head & Neck: WoSCAN resection margins improved. SCAN greater number of laryngectomies performed as primary treatment. Colorectal: SCAN - Borders now participate in MDT meetings. Improved waiting times. Primary Care: WoSCAN improvement in referral patterns over 2 years of audit. 2.6 How can audit data be utilised more effectively? Themes identified fall into 5 categories: - Datasets o Review and rationalisation of datasets. - Data quality o Improving data collection and quality of data collected. o Quality assurance of data. - Clinical Standards o Development of standards and KPIs for those tumours where nationally agreed standards do not currently exist. - Data reporting o More timely reporting of results and prospective data collection/reporting. o Increasing focus on reporting of outcome data. o National comparative analysis, particularly for low volume tumours. - Performance management o Clear, robust and consistent governance framework, including a systematic approach to dealing with poor performance. 2.7 How can we improve current audit processes? Please list the top 3 priorities for improvement Themes identified fall into 4 main categories. - Datasets o Rationalise dataset minimise base data and follow up. o Define standards to clearly identify what data should be collected. o Redesigned & expanded methods of data collection e.g. prospectively aim to include morbidity data. o Extend data sets to include other cancers not already being audited. o Minimise changes to datasets once agreed. - Data collection o Increase resources and ensure equitable support for audit across Boards to support prospective data collection. o Robust IT linked to other systems. o Embed prospective data collection as part of routine care. o Maximise data collection in real time e.g. via attendance at MDTs or via MDT IT system development. o Separate tracking from clinical audit. - Data reporting 8

9 o Increase frequency of reporting to enable issues to be addressed timeously. o Ensure quality of data presented. - Other o Place greater value on good quality audit. o Recognise that waiting times is only a small part of quality. o Increase engagement of local clinicians. o Support for clinical trials. o No Network wide audit data available (NOSCAN Gyn). Currently available within 3 Centres needs to be brought together. o Ensure primary care management are included within the remit of all Network Offices. Please specify how can MCN/Tumour Groups assist this process of improvement - Agree principles of data collection and utilisation. - Development of standards. - Review of datasets. - Engagement with local audit teams. - Promote regular local review of audit data and support comparative review of audit regionally and nationally. - Identify necessary actions. - Involvement in planning and redesign process. - Dedicated time allocated to work with Primary Care Cancer Networks. 2.8 Please provide any additional information that you think would be helpful to the National Cancer Quality Steering Group. A summary of the suggestions put forward are listed below. - Consider applying the model that has been developed and verified in the Breast Screening Service. - Value of patient input needs to be recognised. - Ensure good 2 way communication between National Cancer Quality Steering Group and MCN/Tumour Groups. - Minimise impact of cancer waiting times reporting on clinical audit. - Avoid imposing national solutions e.g. around IT. - Participating in clinical audit should be made mandatory. - Need to retain flexibility to audit additional, perhaps more important, standards as practice develops. - Develop and support audit within primary care. Tumour specific dataset largely pertain to secondary care. 3. Conclusion The baseline information presented in this summary report provides a snap shot of the current position with regard to cancer clinical audit across NHS Scotland. From the information obtained and the analysis undertaken it is clear that while cancer clinical audit has developed significantly over recent years there is a fundamental need to agree priorities, both national and regional, refocus activity to support delivery of these and to ensure that cancer clinical audit is appropriately resourced and supported. Key themes emerging from this review highlight the need to: - Build on the strong clinical commitment from MCN Clinical Leads to improve cancer clinical audit while recognising the need to ensure wider clinical engagement. - Build on the work already undertaken by the Networks, ISD and NHS Quality Improvement Scotland, ensuring maximum use is made of the skills and expertise available. 9

10 - Improve data quality and completeness across all cancers. Inconsistencies across NHS Boards limits the ability to undertake meaningful comparative analysis and reporting across NHS Scotland and the ability to confidently assure the quality of care provided. - Review and where appropriate rationalise datasets to ensure that performance against agreed standards can be measured. This will involve the need to develop and agree key performance indicators/national standards for all cancers and involve extending audit to include, for example, patient experience and primary care. - Report audit findings more timeously within a clear governance framework where poor performance is clearly defined and appropriately addressed. - Establish smarter data collection methodology whereby data is routinely collected as part of clinical practice and duplication of effort is minimised. - Ensure that a sustainable model of data collection for all cancers is in place in each NHS Board/Region. - Refocus activity on quality of care provided and clinical outcomes, while minimising the impact of collecting and reporting cancer waiting times on this programme of work. This report is underpinned by more detailed information relating to clinical audit data collected during the previous 5 years ( ). This information clearly demonstrates the variable evolution of cancer clinical audit across Scotland in terms of data collection and data completeness and more clearly illustrates the impact that cancer waiting times reporting has had on cancer clinical audit in recent years. The findings from this review validate the early the work programme proposed by the National Cancer Quality Steering Group. The Group will, in the course of its work, consider the range of issues identified in more detail and seek to address these through its work programme. This report, once accepted by the SCT, will be shared with MCN Clinical Leads who participated in this baseline review. Summary report prepared by: Evelyn Thomson, Regional Coordinator WoSCAN 0

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