Consultation on publication of new cancer waiting times statistics Summary Feedback Report

Transcription

1 Consultation on publication of new cancer waiting times statistics Summary Feedback Report Information Services Division (ISD) NHS National Services Scotland March 2010 An electronic version of this document is available at

2 Introduction In October 2008 the Scottish Government published Better Cancer Care An Action Plan 1, where it announced 2 new targets to be delivered by 2011: Extend the 62 day urgent referral to treatment target to include patients who had screened positive and all patients urgently referred with a suspicion of cancer. Introduce a new 31 day target for all patients diagnosed with cancer (no matter how they were referred) from decision to treat to treatment. To remain relevant to the changing set of targets the existing cancer waiting times statistics will need to be replaced with a new series of figures. We produced a consultation document which summarised ISD s proposals for the new series of official statistics due to be published from June This document sought feedback from actual or prospective users of the statistics, to make sure the published statistics would best suit user needs; in particular what statistics should be published and how they should be laid out. The consultation period lasted just over 10 weeks and this report presents the summary of findings and the finalised layout, format and content of the future publication tables. Summary of Findings ISD received 46 feedback responses from the consultation on publication of new cancer waiting times statistics. Of the 46 total responses, 31 (67%) were valid; that is that questions were answered and comments made. Analysis of the consultation feedback is based on valid responses only. Over half (56%) of the respondents class their organisation as NHS Board (territorial), 16% work in the Cancer Charity sector, 10% within Other UK Government organisation; whilst Academia, Audit Scotland, Information Services Division (ISD) Scotland, NHS National Services Scotland (NSS excluding ISD), NHS Board (special excluding NSS), and the Scottish Government each represent 3% of the remaining responders. Finalised tables showing performance against the targets Eighty three percent of respondents agreed that the proposed layout of tables 1 and 2 showing quarterly performance against the 62 day and 31 day target by Network/board and cancer types met their needs in full. Eighty seven percent of respondents said that they were happy with the proposed presentation of trend data (Table 3). When asked for any further views/comments on tables 1 3, responders made comments such as, the layouts looked clear, simple, helpful, and easy to understand. Some responders asked for additional data or further breakdowns of the data to be displayed, for example: ineligible patients, other specific cancer diagnoses, breakdown of urology, aggregated yearly reports

3 Taking the further comments into account, we feel that providing extra information, for example ineligible patients; is unnecessary, as there is not enough demand. Also, information on those included in the target and exclusions are available in tables 5 and 6. We are unable to provide other cancer diagnoses such as Haematological malignancies. Although we capture data specifically for lymphoma, the current dataset does not allow for more specific diagnoses; only the existing cancer types listed. Another responder asked for a more detailed breakdown of cancer type, for example prostate cancer. Our dataset has the functionality to further breakdown Urology into: Urology Bladder, Urology Prostate, and Urology Other. We intend to look at further detailed splits of the existing cancer types if there is sufficient demand, and we may expand the current dataset in the future to include further cancer types. We were also asked if we could produce aggregated yearly reports as well as quarterly reports. All four quarters of data will be published on the website, so our users can calculate yearly figures. If there is enough demand from customers, we may produce yearly reports in the future. It also emerged that most respondents felt that the trend data (Table 3) would be more useful if we provided information by individual cancer type. However, tables 1 and 2 already provide this level of detail so we will not repeat this in Table 3. Therefore, these tables will be published as proposed, with the exception of Table 3. We will use a suggestion made by one of the responders to improve the layout of Table 3 by removing the numerator (number treated within 62/31) and displaying all the denominators (number of referrals and percentage treated within 62/31 ) together by Board and Network, and all the percentages together by Board and Network. Further statistics for lengths of wait will be provided in Tables 1 3, as discussed on Page 4. (See appendices A and B, pages 6 9 for the finalised layouts of Tables 1 3.) Finalised graphs and tables showing overall distribution of waiting times Figure 1 and Table 4 present the distribution of waiting times data: 67% of respondents said Yes they were happy with the distribution of waiting times data proposals, 17% stated No, 13% had No opinion either way, and one respondent (3%) from an Other UK Government organisation replied Don t know. We received lots of differing comments when respondents were asked to give further opinions on Figure 1 and Table 4. Conflicting views ranged from Figure 1 being classed as useful and a good representation of the data; to it being of limited use. Table 4 generally received more constructive feedback such as it is more useful than Figure 1 but could be improved by displaying numbers as well as percentages. Many responders asked for Figure 1 and Table 4 to be broken down by Board and Network level for individual cancer types and by referral source. They also raised concerns that the table provided too much detail and could be misinterpreted. 2

4 After considering all responders views, we deemed that it would not be feasible or appropriate to produce the graph and table for each Board/Network and individual cancer type/referral source, given the small number of cases involved for some Boards and cancer types. Therefore, we will publish Figure 1 at a national level only for all cancers combined. We will act on further comments received by changing the graph to look at patients treated, rather than those still waiting, and to add a footnote about the tolerance level. Table 4 will also be published at national level only for individual cancer types due to the larger discrete time bands involved. Specific comments regarding the baskets of in Table 4 have also been taken into account, as these were not evenly spread. We have improved these baskets by standardising the ranges. The 62 day target table will be comprised of five bands using the following range: 0 20, 21 41, 42 62, 63 83, and 84 or more. The 31 day target table have four bands employing the following range: 0 15, 16 31, 32 47, and 48 or more. We will also take on board the comments from responders and insert an extra column showing the number of eligible referrals as well as the percentages. (See appendices C and D, pages for the finalised layouts of Figure 1 and Table 4.) Finalised tables showing exclusions and waiting times adjustments Seventy nine percent of responders broadly agreed with ISD's proposals to publish data on exclusions and adjustments (tables 5 and 6). Many stated that everything should be published for transparency. Several opposing comments were also received saying that this information should not be published until the new definitions are consistently applied across Scotland, or should only published for NHS use initially. There were also concerns that we will need a lot of explanation to explain these exclusions and adjustments, and that it may be difficult for the public to understand. Others suggested that this type of information should be included as general information and not as a specific table. Twenty two percent of responders thought that we should not include referrals not covered by the target as this may lead to confusion. Presenting data on the total referrals and the number of referrals not covered by the 62 day target is in keeping with the New Ways approach of being clear that there are patients who go through the system but who are not covered by this waiting times target. We appreciate that there are concerns that the column listing Total Referrals will not itself count everyone going through the system, and that it may introduce other complexities for the publication to explain. However, the consideration here was openness and transparency of the statistics in line with the UK Statistics Authority (UKSA) principles. 3

5 Feedback from our consultation responders showed us that 82% thought we should publish Total referrals and 70% for referrals not covered by the target. Therefore we will publish all the information contained in tables 5 and 6. However, we intend to change the Total referrals column heading to Total referrals submitted (Urgent & Non urgent referrals) and Referrals not covered by the 62 day target to Non urgent referrals to be clearer. We will also action improvements suggested by the responders, by adding the percentage of exclusions and separating the adjustments to identify patient and medical delays. (See appendices E and F, pages for the finalised layouts of Tables 5 and 6.) Further statistics to be included in the publications As well as the figures outlined under Proposed tables showing performance against the targets, responders were also asked whether they thought that the publication should include further statistics about lengths of wait. Although 61% of responders said that the publication should include additional statistics for lengths of wait, views differed as to what these should be. After analyses of all responses, and taking the responders further comments into account; we will use the maximum, median and 90 th percentile. The maximum and median waits had more support than the other statistics. We are using the 90 th percentile rather than the 95 th percentile to be consistent with other waiting times data published. Another factor is that we need more patients to calculate a 95 th percentile, which may be impractical with the small numbers involved for some boards and cancer types. General Comments We would also like to address some of the general and other comments we received. Most responders (86%) stated that downloadable Excel files would meet their needs. However, responders also asked for CSV and PDF files, and HTML format. We intend to provide data in PDF files and HTML format where possible and appropriate. Many responders asked for the screening information to be reported separately. There will be separation of patients referred from a screening service. This will allow these figures to be assessed separately as this information is first published. Information presented at NHS Board and regional Cancer Network level in the 31 day tables will be reflected separately for the Golden Jubilee National Hospital, but will be included within the Scotland total. Analyses of responders comments also emphasised that we need to provide more informative: table titles, column headings, footnotes and explanatory text specifying all the inclusion/exclusion criteria, sensitivity of small numbers, waiting times adjustments, and interpretation notes in more depth to make this information clearer for our users. ISD will work closely with our Scottish Government colleagues to aid interpretation for all our customers. 4

6 To make this information more functional, accessible and user friendly for our users we will also use filters/drop down menus to select information for a particular Board, Network, cancer type, or indicator for some of the tables. Finally, all the information presented at Board, Network and cancer type level will be subject to disclosure consideration, and may not be published at all of these levels. In our role as provider of information to a wide range of customers including the NHS, Government, researchers, charities, the media and members of the public, we recognise that we may receive ad hoc requests for alternative or more detailed information, and will handle these requests under existing arrangements for information requests and disclosure control. 5

7 Appendices Appendix A: Finalised table outline for performance against new 62 day target Table 1: Performance against the 62 day target from receipt of an urgent referral with a suspicion of cancer to first cancer treatment by NHS Board and regional Cancer Network Period of treatment: 1 st January to the 31 st March 2010 All cancer types* Title will automatically change when user selects a different Cancer Type Select Cancer Type: All cancers Select drop down box for Cancer Type Area of receipt of referral Number of eligible referrals 1 Number treated within 62 Percentage treated within 62 Maximum wait Median wait 90th Percentile Scotland ZZZZ ZZZZ ZZ.Z% ZZZZ ZZZZ ZZZZ NOSCAN 2 YYYY YYYY YY.Y% YYYY YYYY YYYY Grampian % Highland % Orkney % Shetland % Tayside % Western Isles % SCAN 3 YYYY YYYY YY.Y% YYYY YYYY YYYY Borders % Dumfries & Galloway % Fife % Lothian % WOSCAN 4 YYYY YYYY YY.Y% YYYY YYYY YYYY Ayrshire & Arran % Forth Valley % Greater Glasgow & Clyde % Lanarkshire % Notes 1. Referrals covered by the 62 day target, excluding patients who had a clinically complex pathway, died before treatment or refused treatment. See Background for more information. 2. NOSCAN = North of Scotland CAncer Network 3. SCAN = South East Scotland CAncer Network 4. WOSCAN = West of Scotland CAncer Network *All cancer types for which data are recorded: breast, colorectal, head and neck, lung, lymphoma, melanoma, gynae ovarian, upper GI, urological, and gynae cervical (screen detected). YYYY or YY.Y% in the table above indicate subtotals by Cancer Network. ZZZZ or ZZ.Z% in the table above indicate totals for Scotland. This table will also be presented in an alternative format by listing Cancer Types and selecting Board and Network (see below): 6

8 Table 1: Performance against the 62 day target from receipt of an urgent referral with a suspicion of cancer to first cancer treatment by Cancer Type Period of treatment: 1 st January to the 31 st March 2010 NHS Scotland Title will automatically change when user selects a different Board/Network Select Board/Network: NHS Scotland Select drop down box for Board/Network Area of receipt of referral Number of eligible referrals 1 Number treated within 62 Percentage treated within 62 Maximum wait Median wait 90th Percentile All cancer types* ZZZZ ZZZZ ZZ.Z% ZZZZ ZZZZ ZZZZ Breast ZZZZ ZZZZ ZZ.Z% ZZZZ ZZZZ ZZZZ Colorectal % Head & Neck % Lung % Lymphoma % Melanoma % Gynae ovarian % Gynae cervical % Upper GI % Urological % Notes 1. Referrals covered by the 62 day target, excluding patients who had a clinically complex pathway, died before treatment or refused treatment. See Background for more information. *All cancer types for which data are recorded: breast, colorectal, head and neck, lung, lymphoma, melanoma, gynae ovarian, upper GI, urological, and gynae cervical (screen detected). ZZZZ or ZZ.Z% in the table above indicate totals for Scotland, Board and Cancer Network. These tables will be replicated for performance against the new 31 day target i.e. Table 2. 7

9 Appendix B: Finalised table outline for trend information on performance against targets Table 3: Trend performance against the 62 day target from receipt of an urgent referral with a suspicion of cancer to first cancer treatment by NHS Board and regional Cancer Network Period of treatment: Trend data from 1 st January to the 31 st March 2010 The number of eligible referrals 1 for all cancer types* Title will automatically change when user selects a different indicator, for example % treated within 62 Select Indicator Num ber of eligible referrals Select drop down box for indicator Area of receipt of referral 31 st Mar 2010 Patients first treated during quarter ending 30 th June 30 th Sept 31 st Dec st Mar 2011 Scotland ZZZZ ZZZZ ZZZZ ZZZZ ZZZZ NOSCAN 2 YYYY YYYY YYYY YYYY YYYY Grampian Highland Orkney Shetland Tayside Western Isles SCAN 3 YYYY YYYY YYYY YYYY YYYY Borders Dumfries & Galloway Fife Lothian WOSCAN 4 YYYY YYYY YYYY YYYY YYYY Ayrshire & Arran Forth Valley Greater Glasgow & Clyde Lanarkshire Notes 1. Referrals covered by the 62 day target, excluding patients who had a clinically complex pathway, died before treatment or refused treatment. See Background for more information. 3. NOSCAN = North of Scotland CAncer Network 4. SCAN = South East Scotland CAncer Network 5. WOSCAN = West of Scotland CAncer Network *All cancer types for which data are recorded: breast, colorectal, head and neck, lung, lymphoma, melanoma, gynae ovarian, upper GI, urological, and gynae cervical (screen detected). YYYY or YY.Y% in the table above indicate subtotals by Cancer Network. ZZZZ or ZZ.Z% in the table above indicate totals for Scotland. This table will also be presented in an alternative format by listing indicators and selecting Board and Network (see below): 8

10 Table 3: Trend performance against the 62 day target from receipt of an urgent referral with a suspicion of cancer to first cancer treatment by indicator type for all cancer types* Period of treatment: Trend data from 1 st January to the 31 st March 2010 NHS Scotland Title will automatically change when user selects a different Board/Network Select Board/Network: NHS Scotland Select drop down box for Board/Network Indicator 31 st Mar 2010 Patients first treated during quarter ending 30 th June 30 th Sept 31 st Dec st Mar 2011 Number of ZZZZ ZZZZ ZZZZ ZZZZ ZZZZ eligible referrals 1 % treated within ZZ.Z% ZZ.Z% ZZ.Z% ZZ.Z% ZZ.Z% 62 Maximum wait ZZZZ ZZZZ ZZZZ ZZZZ ZZZZ Median wait ZZZZ ZZZZ ZZZZ ZZZZ ZZZZ 90th Percentile ZZZZ ZZZZ ZZZZ ZZZZ ZZZZ Notes 1. Referrals covered by the 62 day target, excluding patients who had a clinically complex pathway, died before treatment or refused treatment. See Background for more information. *All cancer types for which data are recorded: breast, colorectal, head and neck, lung, lymphoma, melanoma, gynae ovarian, upper GI, urological, and gynae cervical (screen detected). ZZZZ or ZZ.Z% in the table above indicate totals for Scotland, Board and Cancer Network. These tables will also be replicated for performance against the new 31 day target. 9

11 Appendix C: Finalised graph showing distribution of waits Figure 1: Distribution of waits against the 62 day target from receipt of an urgent referral with a suspicion of cancer to first cancer treatment Period of treatment: 1 st January to the 31 st March 2010 NHS Scotland and all cancer types* Figure 1: NOTE THIS IS ILLUSTRATIVE THE GRAPH DOES NOT SHOW REAL DATA 100% Percentage of patients treated 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% 62 day target NOT REAL DATA Days since receipt of referral *All cancer types for which data are recorded. As screen detected cancers and/or further cancer types are added to the target, the publications will highlight where there are discontinuities between graphs for patients treated in successive quarters. A tolerance level is applied to the new targets. The agreed tolerance level is 5% for each of these targets, that is the stated waiting time must be met for 95% of all patients covered by the target. For some patients it will not be clinically appropriate for treatment to begin within 62 of referral, for example, where a series of tests needs to be done in sequence, or for a difficult diagnosis that may require a series of interventions and a period of time to resolve. This figure will be replicated for performance against the new 31 day target. 10

12 Appendix D: Finalised table outline for statistics on distribution of waits Table 4: Distribution of waits against the 62 day target from receipt of an urgent referral with a suspicion of cancer to first cancer treatment by Cancer Type Period of treatment: 1 st January to the 31 st March 2010 NHS Scotland Cancer type 1 Length of wait from receipt of referral to first treatment 2 Number of eligible referrals or more All cancer types* ZZZZ ZZ.Z% ZZ.Z% ZZ.Z% ZZ.Z% ZZ.Z% Breast ZZZZ 00.0% 00.0% 00.0% 00.0% 00.0% Colorectal % 00.0% 00.0% 00.0% 00.0% Head & Neck % 00.0% 00.0% 00.0% 00.0% Lung % 00.0% 00.0% 00.0% 00.0% Lymphoma % 00.0% 00.0% 00.0% 00.0% Melanoma % 00.0% 00.0% 00.0% 00.0% Gynae ovarian % 00.0% 00.0% 00.0% 00.0% Gynae cervical % 00.0% 00.0% 00.0% 00.0% Upper GI % 00.0% 00.0% 00.0% 00.0% Urological % 00.0% 00.0% 00.0% 00.0% Table 4: Distribution of waits against the 31 day target from decision to treat to first cancer treatment by Cancer Type Period of treatment: 1 st January to the 31 st March 2010 NHS Scotland Cancer type 1 Length of wait from decision to treat to first treatment 2 Number of eligible referrals or more All cancer types* ZZZZ ZZ.Z% ZZ.Z% ZZ.Z% ZZ.Z% Breast ZZZZ 00.0% 00.0% 00.0% 00.0% Colorectal % 00.0% 00.0% 00.0% Head & Neck % 00.0% 00.0% 00.0% Lung % 00.0% 00.0% 00.0% Lymphoma % 00.0% 00.0% 00.0% Melanoma % 00.0% 00.0% 00.0% Gynae ovarian % 00.0% 00.0% 00.0% Gynae cervical % 00.0% 00.0% 00.0% Upper GI % 00.0% 00.0% 00.0% Urological % 00.0% 00.0% 00.0% Notes 1. May not be shown for all individual cancer types, due to small numbers. 2. Percentages shown in each row should add up to 100%. *All cancer types for which data are recorded. As screen detected cancers and/or further cancer types are added to the target, the publications will highlight where there are discontinuities between tables for patients treated in successive quarters. 11

13 Appendix E: Finalised table outline for information on exclusions and adjustments in respect of 62 day target Table 5: Exclusions and waiting times adjustments against the 62 day target from receipt of an urgent referral with a suspicion of cancer to first cancer treatment by NHS Board and regional Cancer Network Period of treatment: 1 st January to the 31 st March 2010 All cancer types* Area of receipt of referral Total referrals submitted 2 (Urgent & Non urgent referrals) Non urgent referrals 3 Urgent Referrals 4 Referrals covered by 62 day target Excluded from target calculations 5 Percentage exclusions Number of eligible referrals 6 Referrals included in analysis but with waiting time adjustment (WTA) made 7 Number Patient delay Medical delay Median Number Median adjustment 8 adjustment 8 Scotland ZZZZ ZZZZ ZZZZ ZZZZ ZZ.Z% ZZZZ ZZZZ ZZZZ ZZZZ ZZZZ NOSCAN YYYY YYYY YYYY YYYY YY.Y% YYYY YYYY YYYY YYYY YYYY Grampian % Highland % Orkney % Shetland % Tayside % Western Isles % SCAN YYYY YYYY YYYY YYYY YY.Y% YYYY YYYY YYYY YYYY YYYY Borders % Dumfries & Galloway % Fife % Lothian % WOSCAN 4 YYYY YYYY YYYY YYYY YY.Y% YYYY YYYY YYYY YYYY YYYY Ayrshire & Arran % Forth Valley % Greater Glasgow & Clyde % Lanarkshire %

14 Notes on table 5 Each column in the table is labelled from A to I to help with the questions that we ask you later in this document and on the online consultation feedback form. 1. All cancer types currently covered by the target, these being: breast, colorectal, head & neck, lung, lymphoma, melanoma, ovarian, upper GI, urological and screendetected cervical cancers. *As screen detected cancers and/or further cancer types are added to the target, the data for these will also be reflected in the above totals. In these instances, ISD will also make clear in its publications where there are discontinuities between the All cancer types figures for one time period and the All cancer types figures for subsequent periods. 2. All referrals submitted where the patient started their first treatment during the stated time period, regardless of the referral route or source. 3. For example because the referral was not urgent or not from a screening programme. These referrals are however included in the 31 day target covering the time from decision to treat to start of first treatment. 4. For example because the patient was urgently referred with a suspicion of cancer by their GP or dentist. 5. Because the patient died before treatment, refused all treatment, or had a particularly complex clinical pathway. 6. This is the number of referrals for which performance against the 62 day target is monitored. 7. For patient induced delays (e.g. because they did not attend an appointment) or medical delays (e.g. the patient had another condition requiring treatment before cancer treatment could be started). 8. The median amount of time by which waiting times were adjusted where patients had an adjustment. 13

15 Appendix F: Finalised table outline for information on exclusions and adjustments in respect of 31 day target Table 6: Exclusions and waiting times adjustments against the 31 day target from decision to treat to first cancer treatment by NHS Board and regional Cancer Network Period of treatment: 1 st January to the 31 st March 2010 All cancer types* Area of first treatment Referrals in 31 day target cohort Referrals included in analysis but with waiting time adjustment (WTA) made 5 Patient delay Medical delay Number Median Urgent & Excluded Percentage Number of Number Median Non urgent from target exclusions eligible adjustment 6 adjustment 6 referrals 2 calculations 3 referrals 4 Scotland ZZZZ ZZZZ ZZ.Z% ZZZZ ZZZZ ZZZZ ZZZZ ZZZZ NOSCAN YYYY YYYY YY.Y% YYYY YYYY YYYY YYYY YYYY Grampian % Highland % Orkney % Shetland % Tayside % Western Isles % SCAN YYYY YYYY YY.Y% YYYY YYYY YYYY YYYY YYYY Borders % Dumfries & Galloway % Fife % Lothian % WOSCAN 4 YYYY YYYY YY.Y% YYYY YYYY YYYY YYYY YYYY Ayrshire & Arran % Forth Valley % Greater Glasgow & Clyde % Lanarkshire % National Waiting Times Centre (Golden Jubilee National Hospital) %

16 Notes on table 6 1. All cancer types currently covered by the target, these being: breast, colorectal, head & neck, lung, lymphoma, melanoma, ovarian, upper GI, urological and screendetected cervical cancers. *As screen detected cancers and/or further cancer types are added to the target, the data for these will also be reflected in the above totals. In these instances, ISD will also make clear in its publications where there are discontinuities between the All cancer types figures for one time period and the All cancer types figures for subsequent periods. 2. All referrals submitted where the patient started their first treatment during the stated time period, regardless of the referral route or source. 3. Because the patient died before treatment, refused all treatment, or had a particularly complex clinical pathway. 4. This is the number of referrals for which performance against the 31 day target is monitored. 5. For patient induced delays (e.g. because they did not attend an appointment) or medical delays (e.g. the patient had another condition requiring treatment before cancer treatment could be started). 6. The median amount of time by which waiting times were adjusted where patients had an adjustment. 15