1. Achieving improved cancer outcomes- a pathway approach, engaging primary care and partners Kathy Elliott Programme Director – NHS Improving Quality (Delivery Team) kathy.elliott@nhsiq.nhs.uk

2. Declaration of Interests National programme of work, funded through national and local public sector funding. No payment for this presentation or for advice. Partnership initiative – with contributions from cancer charities and professional organisations Evaluation – independent, coordination of multiple data streams. Research funded by National Cancer Action Team/ Department of Health

3. Introduction Our aim - to improve cancer survival and ‘save 5,000 lives per year’ Our approach - national policy, programme and leadership; public awareness; a health services pathway approach; research and evaluation Engaging and change in primary care Working with partners to achieve and sustain large scale change – national / local

4. Colorectal Cancer 1yr RS Lung Cancer 1yr RS Breast Cancer 1yr RSOvarian Cancer 1yr RS ICBP: 1 year relative survival. Coleman et al, Lancet 2011

5. Why are we making a difference? Shared purpose – understanding and harnessing the different perspectives Clinical leadership – GP, hospital, public health ‘open approaches’ – sharing ideas and data, energy-generating Relationships and networks with ‘reach’, building bridges and sharing knowledge for action Patient and public focus - and outcomes Sustaining a focus and improvement over time

6. The NAEDI Pathway National Awareness and Early Diagnosis Initiative Low public awareness and/ or negative beliefs about cancer Late presentation to a GP Difficulty accessing primary care Poor survival rates Low uptake of screening Emergency presentations Delays in Primary Care Late presentation to hospital services Delays in secondary care More advanced disease at diagnosis Avoidable deaths

7. Public Awareness Be Clear on Cancer (BCOC) – –a national campaign – tested local and regional –Tailored to specific cancer sites and symptoms –40 complex data sets, with bespoke analysis, using control areas where possible Alignment with other public awareness raising –Cancer Charities –Local outreach and targeting –Clinician, NHS and public health endorsement

8. Increasing Public Awareness – impact on lung cancer National awareness campaign for symptoms of lung cancer; 6 weeks in 2012 Public awareness of symptoms increased from 41% to 50% Urgent referrals for suspected lung cancer increased by 30% May –June 2011May-June 2012 Cases76398335 Early Stage (1 or 2)23.4%26.9% Late Stage (3B or 4)62.5%59.6% Surgical resection13.7%16.0% CRUK analysis of LUCADA data 2013

9. Supporting Primary Care Package of initiatives implemented at Network/ geographic area. Centrally driven/supported, locally determined and delivered GP cancer leadership – national and local Practice level cancer information (n=8,500) –Available to the practices and public; targeted peer (GP-GP)visits Practical tools, resources and people to support change

10. GP Leadership and Primary Care Support - Evaluation Participation in any NAEDI initiative – 74% of practices (4380) returning data. Spread across 20 Cancer Networks (70%) Significantly greater increase in 2ww referrals for practices engaging in practice plans, risk assessment tools, clinical audit, significant event analysis. Practices that produced practice cancer plans (alone or in combination with other activities) showed the greatest change The amount of variation in referral practice was less for intervention practices

11. Practice activities (cumulative from 2009 to 2013) March 2013All Networks* No. of practices providing information5917 8327 Practice not engaged in any activity153726%394747% No. of practices engaged in at least one activity438074%438053% Referral Pathways and access to diagnostics Novel diagnostic pathways1483%2% Local adaptation of guidelines70012%8% Action to reduce delays57510%7% Process mapping and redesign3015%4% Case finding57210%7% Other821% Total94616%11% Awareness raising Practice level initiatives linked to regional or national campaign58710%7% Practice preparedness for awareness campaigns343658%41% Other3254%3% Total71712%9%

12. March 2013All networks* No. of practices providing information5917 8327 Practice not engaged in any activity153726%394747% Continuing professional development Safety netting in the consultation88515%11% Uptake of training resources180731%22% Other65411%8% Total181531%22% Organisational development Review of cancer metrics205635%25% Action to implement administrative safety netting5579%7% Practice Cancer Plans94916%11% Other5569%7% Total228639%27% Audit Use of RCGP / NCAT Criterion based Audit122621%15% Significant event analysis106519%13% Other841%2% Total152526%18% Clinical decision making Risk assessment tool155626%19% Risk profiling of individuals or patient groups3045%4% Other40%4% Total162227%19% * Assumes zero activity in non- responding networks

13. Mechanisms to facilitate change Continued education for GPs Improvement of accuracy and use of 2 week wait referrals –Clinical decision support tools Face to face engagement with practices. New work investigating intensity, capacity, and impact of practice context and motivation. Links to generic quality incentives Shared purpose and vision Use of tools to improve quality Shift from projects to absorbing into mainstream practice

14. Challenges Short-termism –funding, fixed term contracts, organisational change, relationships between GPs and organisation of cancer services Clarity about roles –Realism of job objectives, individual’s roles and responsibilities Skills –Relationships between GPs and new (and changing) health care and public health organisations Using theory and evidence –Dissemination; accessibility; easy to read and understand format for GPs Engaging clinicians and developing clinical leaders –Work with individual GPs ‘patchy’; clinical leadership in every practice Change takes time –‘changing hearts and minds’ – as well as altering processes –Primary care a complex environment – isn’t a ‘one size fits all’ solution to implementing change

15. Model of patient pathways to treatment Walter et al, J Health Serv Res and Policy 2012

16. In conclusion Sustaining focus on improving cancer survival over time, with changes in leadership and policy Change, aligned across the patient pathway, including public awareness and primary care. The pre diagnosis part of the pathway is important. Demonstrating impact - quality of care and outcomes Applying learning from health service change to achieve improved patient care and population outcomes in specific diseases

17. Key weblinks and papers National (England) Cancer Policy – Improving Outcomes – a strategy for cancer – https://www.gov.uk/government/publications/the-national-cancer-strategy-3rd-annual-report--2 https://www.gov.uk/government/publications/the-national-cancer-strategy-3rd-annual-report--2 NAEDI – General website - http://www.cancerresearchuk.org/cancer- info/spotcancerearly/naedi/AboutNAEDI/http://www.cancerresearchuk.org/cancer- info/spotcancerearly/naedi/AboutNAEDI/ – Evidence - http://www.nature.com/bjc/journal/v101/n2s/index.html and research conferenceshttp://www.nature.com/bjc/journal/v101/n2s/index.html – ICBP – http://www.cancerresearchuk.org/cancer-info/spotcancerearly/ECBP/http://www.cancerresearchuk.org/cancer-info/spotcancerearly/ECBP/ Be Clear on Cancer – Resources - http://www.cancerresearchuk.org/cancer-info/spotcancerearly/naedi/beclearoncancer/http://www.cancerresearchuk.org/cancer-info/spotcancerearly/naedi/beclearoncancer/ – Evaluation - http://www.cancerresearchuk.org/prod_consump/groups/cr_common/@nre/@hea/documents/gen eralcontent/cr_113267.pdf http://www.cancerresearchuk.org/prod_consump/groups/cr_common/@nre/@hea/documents/gen eralcontent/cr_113267.pdf Support for Primary Care – GP Practice Profiles http://www.ncin.org.uk/cancer_information_tools/profiles/gp_profileshttp://www.ncin.org.uk/cancer_information_tools/profiles/gp_profiles – RCGP - http://www.rcgp.org.uk/system-pages/search-results.aspx?keywords=Cancerhttp://www.rcgp.org.uk/system-pages/search-results.aspx?keywords=Cancer Large scale change – http://www.nhsiq.nhs.uk/resource-search/publications/nhs-inst-leading-large-scale-change.aspx http://www.nhsiq.nhs.uk/resource-search/publications/nhs-inst-leading-large-scale-change.aspx NHS Change Model – http://www.nhsiq.nhs.uk/capacity-capability/nhs-change-model.aspx http://www.nhsiq.nhs.uk/capacity-capability/nhs-change-model.aspx Full primary care evaluation - all reports available via (archived) NCAT website and on Durham University website.