Identifying cancer patients’ journeys through health services prior and post COVID-19 pandemic using linked population-scale electronic health data.


Year:

Session type:

Rowena Griffiths1, Ashley Akbari2, Giles Greene3, Jun Han2, Dyfed Wyn Huws3, Monica Jones4, Mark Lawler5, Eva Morris6, Martin Rolles7, Janet Warlow3, Ronan Lyons2
1Swansea University Medical School, 2Swansea University, 3Other, 4University of Leeds, 5Queen’s University Belfast, 6University of Oxford, 7Swansea Bay University Health Board

Abstract

Background

The SAIL Databank is a privacy-protecting Trusted Research Environment (TRE), with access to multiple population-scale, linkable health and specialist cancer data resources. These include Cancer Network Information System Cymru records, the  Welsh Cancer Intelligence Surveillance Unit  national  registry data, Breast Test, Bowel Screening  and Cervical Screening Wales, also emerging data from Single Cancer Pathway, Radiotherapy and Systemic Anti-Cancer Therapy. Additional health service interactions, co-morbidities, referrals, treatments and outcomes can be identified from primary care Welsh Longitudinal General Practice, emergency department attendance and hospital admissions data sources.

Method

By linking these data sources at individual-level, it is possible to build a longitudinal picture of the patient journey   from presentation to diagnosis,   through various treatments to intermediary and final outcomes. From 2020 to 2021, fortnightly real-time data updates permit ongoing monitoring of cancer referrals and outcomes during the COVID-19 pandemic.

Results

By way of demonstration of the potential impact of what is achievable with this rich source of data, we built patient journey profiles for breast and colorectal cancer from 2016-2019 prior to COVID-19 to enable comparison. The table below provides a summary of the journey components for colorectal and breast cancer patients.

 

Stage in Journey

Colorectal (n)

Breast (n)

Unique Cases

8,284

9,938

Surgery

6,093

7,989

Drug Therapy

3,056

5,260

Radiotherapy

1,146

880

GP Referrals

3,993

6,119

Screening Referrals

784

134

Other Referrals

1,560

3,439

Emergency Admissions

1,838

5,257

 

Analyses are underway to compare patient pathways prior and post COVID-19 but early data indicates noticeable decreases in referrals and treatments in 2020 with each cancer being affected in a different manner.

 

Conclusion

Population-scale specialist cancer resources together with supporting health data sources within the SAIL Databank permit an in-depth examination of how cancer patients interact with health care services over time, providing a more enriched view of their care. 

Impact statement

This will facilitate monitoring the long-term impact of COVID-19 on the different phases of the patient cancer journey, and the evaluation of interventions and advancements in care to be adopted to improve the patient experiences and outcomes during that journey.