Report from the Systemic Anti-Cancer Therapy (SACT) Dataset Conference

This meeting was principally supported by Roche Products Ltd. Roche Products Ltd provided financial support for meeting materials, advertising, on-lin...
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This meeting was principally supported by Roche Products Ltd. Roche Products Ltd provided financial support for meeting materials, advertising, on-line registration, venue hire, refreshments and logistics support. Roche Products Ltd did influence the content of the meeting and the choice of some speakers.

Report from the Systemic Anti-Cancer Therapy (SACT) Dataset Conference Tuesday 8th April 2014 The Royal College of Physicians, London Supporting organisations:

Chairs: Professor John Newton, Chief Knowledge Officer, Public Health England Professor Martin Gore, Medical Director of The Royal Marsden NHS Foundation Trust and Professor of Cancer Medicine at the Institute of Cancer Research

Thank you to our additional sponsors:

This meeting was also supported by Bristol-Myers Squibb, Genomic Health, Janssen, Lilly, Merck Serono and MSD who did not influence the content of the meeting and the choice of speakers. Date of preparation: June 2014 RXUKECON00038r

Supported by:

Report from the Systemic Anti-Cancer Therapy (SACT) Dataset Conference Tuesday 8 April 2014, The Royal College of Physicians, London

Introduction On 1 April 2012, the SACT initiative, a national data collection programme designed to optimise patient outcomes and service provision for cancer chemotherapy, was introduced. The SACT remit was to collect data from all organisations providing cancer chemotherapy services for the management of solid and haematological malignancies within, or funded by, the NHS in England. SACT encompassed all patients with cancer, both adults and children, including those managed in acute inpatient and day case outpatient settings, those receiving treatment in the community and those enrolled in clinical trials. Two years on, SACT continues to move from strength to strength. In March 2014, around 138 of the 142 Trusts were providing data returns for over 132,000 individual patients, providing NHS Trusts, commissioners and NHS managers with the largest source of cancer service implementation and drug utilisation data worldwide. From April 2014, all NHS Trusts have been mandated to return SACT data to NHS England; failure to do so will result in service contract derogation. As a result, the NHS has an unrivalled opportunity to use the SACT dataset to support becoming a world leader in optimising outcomes for individuals with cancer. In his opening address, morning Chair Professor John Newton (Chief Knowledge Officer, Public Health England) emphasised the need to strive to optimise the quality of SACT data returns, and to share ideas for how the data can be used to improve outcomes for individuals with cancer. He was confident that these challenges could be addressed and that there was unprecedented excitement about the insights that SACT data could provide over the next 12 months and beyond.

Information technology in the new NHS Professor Jonathan Kay (Clinical Informatics Director, NHS England) spoke first on the advantages that the computerisation of many aspects of NHS management can provide, from improving patient safety to reducing wastage and costs. Robust utilisation of IT within healthcare delivery provides substantial potential in optimising core clinical priorities within the NHS, particularly for medicines

Professor Newton emphasised his wish to “put the data in the hands of the people who can make a difference”

management (including ePrescribing and computerised administration) and managing specialist oncology services. Professor Kay identified the fragmented healthcare delivery structure of the NHS as a substantial barrier to achieving consistent IT utilisation, citing current IT systems as inflexible, outdated and based on the needs of single organisations. Nevertheless, primary care has shown that comprehensive computerisation of patient data is achievable; GPs now have fully computerised records, many of them for over 20 years. The SACT dataset represents a fantastic opportunity to integrate IT with healthcare delivery, and Professor Kay called on delegates to take this opportunity to share their thoughts around SACT implementation to maximise the potential benefits of the dataset for commissioning and service optimisation.

Challenges around Big Data Following the well-publicised issues around the Government’s care.data project, Mr Tim Kelsey (National Director for Patients and Information, NHS England) emphasised the importance of developing a robust value case for utilisation of SACT data to support engagement with the public. Mr Kelsey highlighted Professor Sir Brian Jarman’s identification of the high mortality rates within the Mid Staffordshire NHS Foundation Trust using Hospital Episode Statistics as a clear example of the public benefits that Big Data can provide.

Access to SACT data Mr Kelsey also asked delegates to consider the issue of how, and when, patients should access their personal data. From March 2015, patients will have full online access to their GP records, and the Secretary of State for Health has recommended that by 2018 patients should have access to their medical records across both primary and secondary care. Mr Kelsey recommended that SACT should operate within the core principles of transparency and patient participation/engagement, namely: • The right of patients to opt out of data collection • That no person-level data should be available unless there is absolute transparency about its potential usage The topic of industry utilisation of SACT data focussed on encouraging industry to partner with NHS organisations with the aim of improving patient outcomes through analysis of the data. Examples were provided in the afternoon session where Roche had partnered with the East and North Hertfordshire NHS Trust, and The Christie NHS Foundation Trust to assess current utilisation of SACTs.1 Allowing the pharmaceutical industry access to the SACT data outside of NHS partnerships was seen as unlikely, at least in the short term.

Building the value case for utilising SACT data Cancer outcomes and the survival challenge Mr Sean Duffy (National Clinical Director for Cancer, NHS England) presented the first in a series of three presentations on current challenges in the delivery of cancer services, and the potential that the SACT dataset provides in addressing these issues. While the UK has undoubtedly seen improvements in mortality for individuals with cancer, there is still a substantial survival gap between the UK and other developed

Mr Duffy emphasised one of the core principles of cancer service redesign in the NHS: the “focus on improving outcomes at all levels—removing variation in practice, saving lives and providing patients with a better healthcare experience”

countries. Mr Duffy highlighted high emergency presentation rates and age-related treatment inequality as two examples of suboptimal cancer care in the UK. Mr Duffy also highlighted the benefits the SACT dataset provides in addressing key questions around variations in clinical practice, service provision and patient outcomes within the NHS to: • Commissioners and providers in offering services appropriate for patient needs • Patients in understanding the quality of care they receive • The Care Quality Commission in regulating quality • National Institute for Health and Care Excellence in monitoring uptake and re-reviewing medicines • Monitor/NHS England in setting tariffs • Industry in planning research and offering Patient Access Schemes Currently commissioners, providers and clinicians alike all suspect that there are variations in clinical practice and service provision but it remains unclear how these influence patient outcomes. SACT dataset in practice Dr Charles Wilson (Consultant Oncologist, Addenbrooke’s Hospital and Chair, National Cancer Intelligence Network Chemotherapy Clinical Information Group) opened by asserting that the SACT dataset will provide the largest cancer database in the world, and that it offers an opportunity for the UK to become a world leader in optimising cancer outcomes. From the period February 2013 to January 2014, data were collected on 134,185 individual patients: 220,499

chemotherapy regimens were commenced with 595,567 completed cycles. Dr Wilson then presented recent analyses providing early insight into cancer care and outcomes in the UK, including: • Comparison of clinical trial data to real-world outcomes, highlighting differences in the number of treatment cycles that patients complete • Variations in clinical practice among Trusts, hospitals and clinicians • Identification of an association between increasing age and a reduced number of chemotherapy courses after the age of 60 years2 • Variations in mortality rates among Trusts, hospitals and clinicians The latter case study provided a fascinating analysis of post-chemotherapy mortality to the level of individual clinicians, pseudonymised by their GMC number. Dr Wilson highlighted that these data provide a similar level of insight on cancer outcomes to that provided by the outcomes data collected for individual surgeons.

Addressing inequality Dr Matt Kearney (National Clinical Advisor, NHS England and Public Health England) opened his presentation on addressing inequality in service delivery and patient outcomes by highlighting that, while approximately only 20% of healthcare inequality is likely due to variations in clinical care, this still represents a valid and important target for service optimisation (Figure 1). Dr Kearney cited the 2013 NHS England report investigating variations in chemotherapy courses according to patient age in individuals with breast, colorectal or lung cancer as an important example of suboptimal cancer care in the UK.2 The report demonstrates that the number of courses of chemotherapy patients aged >60 years (with breast, colorectal or lung cancer) receive declines with increasing age irrespective of new cancer registration numbers (Figure 2).2 Dr Kearney recognised that the current SACT data has limitations and that a certain degree of variation in service delivery would be expected due to population differences

Health behaviours, 30%

Socioeconomic factors, 40%

Clinical care, 20%

Built environment, 10%

Smoking, 10%

Education, 10%

Access to care, 10%

Environmental quality, 5%

Diet/exercise, 10%

Employment, 10%

Quality of care, 10%

Built environment, 5%

Alcohol use, 5%

Income, 10%

Poor sexual health, 5%

Family/social support, 5% Community safety, 5%

Figure 1: Variations in clinical care represent a valid target for reducing healthcare inequality and improving patient outcomes Source: Robert Wood Johnson Foundation and University of Wisconsin Population Health Institute

6,000

5,000

5,000

4,000

4,000

3,000

3,000

2,000

2,000

1,000

1,000

0

Number of courses of chemotherpy

Number of new breast cancer registrations

6,000

0 24

− 20

4 9 9 4 4 4 9 9 4 9 4 9 + −2 −3 −3 −4 −4 −5 −5 −6 −6 −7 −7 −8 85 25 30 35 40 45 50 55 60 65 70 75 80 Age New breast cancer registrations (ICD 10 code C50)

factor in the success of the SACT initiative. He reported that the pressure to increase transparency often comes from the patient themselves, or their family. On the topic of key performance metrics, Dr Wilson stated a preference to focus on one or two key metrics, particularly mortality for which robust initial data are anticipated to be available by summer 2014. During the following discussion, it was suggested that the SACT dataset is likely to be the primary data source used by the Chemotherapy CRG when considering decommissioning of cancer medicines.

Course of chemotherapy

Figure 2: Diagnoses of breast cancer and courses of chemotherapy received by patients with breast cancer, by age, from April 2012 to April 2013 Source: Are older people receiving cancer drugs? An analysis of patterns in cancer drug delivery according to the age of patient, NHS England (December 2013). Available from: http://www.england.nhs.uk/wp-content/uploads/2013/12/ old-people-rec-cancer-drugs.pdf

between regions. However, unwarranted variation will also exist, and this represents a key target for cancer service optimisation. Panel discussion The panel discussion following the morning presentations explored the issue of collecting data on patient experience. Professor Newton indicated that patient experience data were currently being collected through the Cancer Registry database, and highlighted patient engagement as a critical

Best practice for SACT dataset utilisation In the afternoon session, three case studies demonstrating how the SACT data might be used in practice were presented across a range of perspectives (Hospital Manager, Pharmacist and Research). Hospital Manager perspective Mrs Ann Blake (Deputy General Manager Cancer Services, East and North Hertfordshire NHS Trust) highlighted how the SACT data allows her to optimise infrastructure and staffing and provides her with the resources she requires to support her internal negotiations within the Trust. Through the Joint Working project with Roche, she could support: • Identification of where patients were receiving treatment (with a view to ensuring patients receive treatment in the most convenient location) • Identification of differences between supplied and administered drug volumes (to track data quality of SACT submissions and to engage manufacturers regarding optimising usage to reduce wastage) • Capacity planning for staff rotas to ensure appropriate staffing levels (e.g. analysing numbers of visits and lengthy infusion procedures • Capturing data to support the administration of Patient Access Schemes (to reduce the administrative burden in calculating financial rebates) Mrs Blake highlighted that the IT systems developed to enable SACT data returns would also support the requirement to run Chemotherapy Capacity Planning Tool (C-PORT) assessments. In Mrs Blake’s opinion, data entry for C-PORT assessments typically requires a staffing level of approximately one full-time equivalent. Thus, SACT data collection provides her with resource savings relating to meeting C-PORT assessment requirements.

Pharmacist perspective Mr Robert Duncombe (Director of Pharmacy, The Christie NHS Foundation Trust) highlighted how the SACT dataset enables The Christie to optimise medicines utilisation by: • Ensuring that medicines are being used in accordance with CDF eligibility criteria • Exploring the impact of the introduction of new medicines on the volume of medicines administered • Investigating whether clinicians at The Christie are treating according to evidence-based guidelines • Investigating variations in patient compliance with treatment regimens (to support prescription policy optimisation and reduce drug wastage) Mr Duncombe closed by agreeing that the SACT dataset provides important information for the administration of medicines funded by the CDF. However, he urged delegates to use the data more widely than simply monitoring CDF implementation, particularly for understanding current clinical practice and for optimising outcomes for patients. Research perspective Dr Steve Harris (Head of Clinical Informatics, Oxford Molecular Diagnostics Centre) highlighted that the SACT dataset is a large, prospective observational cohort with huge research potential. Dr Harris outlined how whole genome sequencing and patient data collection could translate into improved patient outcomes, particularly in the progression towards personalised treatment. For example, comprehensive genomic diagnostic reports would enable researchers to investigate questions around whether there are genetic predictors for individuals who won’t complete a treatment cycle, or support identification of those patients who may have a better response to a particular medicine. Dr Harris provided his insight on the quality of data required to support research activities, highlighting that the SACT

data are often not collected for research purposes. High data quality are essential in ensuring that reporting standards are met for publication in high-impact, peer-reviewed journals.

Data quality All the afternoon speakers identified suboptimal data quality as a key challenge in SACT implementation. Two key areas were identified, namely: • Implementing an ePrescribing system • Incomplete data returns Implementing an ePrescribing system Mr Duncombe highlighted clinical trial patients, inpatients, and patients treated at peripheral sites as the most challenging groups to integrate into an ePrescribing system. Mr Duncombe went on to describe a successful initiative at The Christie to develop and launch a basic ePrescribing system within a 2–3 week timeline to support SACT data entry. The Transcribing Prescribing System (TReX) replicates the data collected by an ePrescribing system via manual data entry. Although the ongoing resource burden of the initiative is approximately two to three sessions each week, the TReX system enables The Christie to reach its 90% activity coding target. Incomplete data returns In addressing the issue of incomplete data returns, Mrs Blake presented her thoughts on engaging with healthcare professionals to ensure that they understood the benefits of robust SACT data collection. She also highlighted an initiative to improve data quality by linking the input of several key SACT data fields, including Performance Status, to the clinician’s permission to prescribe. In a lively discussion around data quality, the afternoon Chair, Professor Martin Gore (Medical Director, The Royal Marsden NHS Foundation Trust and Professor of Cancer Medicine at the Institute of Cancer Research) commented that high-quality data is essential to support optimisation of patient outcomes, and suggested that clinicians should have a duty of care to report patient outcomes in the same way that surgeons currently report surgical outcomes. However, Professor Gore indicated that making the process as easy as possible for clinicians should be a key target. The Chemotherapy CRG was suggested as having a role to play in supporting this initiative.

Meeting close Professor Gore closed the meeting by thanking the speakers for their presentations and panel responses, and thanking the delegates for their contributions to the discussions. He hoped that all of the delegates had found the day as informative and interesting as he had.

Delegate feedback “I enjoyed the final case study by Mr Duncombe. It showed how SACT can be used for a number of purposes, yet highlighted some of the challenges faced so far.”

“Dr Kearney’s presentation has definitely made me more conscious of age and treatment options. This is something I will be looking at and discussing with our clinicians.”

“It was interesting to see how the data [collected by Mrs Blake] was helping [her] deliver efficient and effective care for patients.”

References 1. Roche. Joint working between Roche and the NHS. Available at: http://www.roche.co.uk/portal/uk/joint_working_ (accessed May 2014). 2. NHS England. Are older people receiving cancer drugs? An analysis of patterns in cancer drug delivery according to the age of patient. Available at: http://www.england.nhs.uk/wp-content/uploads/2013/12/old-people-rec-cancer-drugs.pdf (accessed May 2014).

For more information on the SACT Dataset Conference, or to access the presentations from the meeting, go to www.sact-conference.co.uk

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