Cancer Data Network
As a founding partner of DATA-CAN, IQVIA has worked with DATA-CAN and its partners to develop the Cancer Data Network (CDN), bringing together NHS organisations that treat cancer. Members of the network can harness data and technology to improve the quality of their care and outcomes for NHS patients across the UK.
The CDN currently has eight member sites, with significant recruitment of sites over the last six months, representing over 25,000 Systemic Anti-Cancer Therapy (SACT) patients with more in the pipeline, and therefore continues to go from strength to strength.
Navigating challenges in cancer service delivery
- Current cancer analytics are often based on data many months out of date
- Processes for identifying study patients are often manual and inefficient, making it harder to find patients for increasingly complex studies
- Research is shifting towards real world data, but limitations exist with current data sources
- Using health data more effectively can drive the development of new cancer diagnostics and treatments, improving patient outcomes and survival rates.
The impact of COVID-19 on cancer services
DATA-CAN’s research in response to the COVID-19 emergency provided a valuable insight into the effects of the pandemic on cancer patients and cancer services. We found that the pandemic had a significant impact on cancer patients and services, including:
- A decline in urgent referrals for cancer (70 per cent decrease) during the initial lockdown
- A decline in chemotherapy attendances (40 per cent decrease) during the initial lockdown
- By the end of December 2020, these declines had not fully recovered.
Using these findings, we estimated that the COVID-19 pandemic could directly and indirectly cause thousands of additional deaths in cancer patients – between 7,165 and 17,910 excess deaths. The CDN is supporting trusts in understanding the impact of the pandemic on their cancer services and how it has affected patients accessing services at their organisation.
Improving cancer service delivery
Interactive dashboards, using cancer data in near real time (refreshed every 24 hours) provide actionable insights and timely cancer data on patients at each Trust, both in the short and longer term. An up-to-date understanding of specific patient populations helps manage patients in accordance with changes in national guidance, while also providing an understanding of changing treatment regimens and their impact on treatment outcomes.
Identifying treatment variations with national reporting and benchmarking
Using non-identified data, IQVIA provide participating organisations with interactive pre-populated dashboards that help them understand variations in care. By analysing data from across many cancer centres and by highlighting best practices, organisations can learn from knowing how other centres manage similar cancers.
Matching patients to clinical studies
Patient identification for studies remains a manual process in many NHS organisations. Furthermore, investigators aren’t always aware of studies on offer at their sites or across the UK, limiting the options for patients. CDN provides a tech-enabled solution to support automated patient identification for studies in a simpler, faster and more efficient way. This solution will help increase the options for patients through facilitating access to new treatments under development.
Making high quality health data available for research
Using a wide variety of privacy-enhancing technologies and safeguards to protect individual privacy, non-identified data is made available for research purposes: approved researchers can analyse data to better understand cancer pathways, outcomes and variations in care for different patient cohorts, all within a secure research environment.
“As a clinician, I believe the Cancer Data Network has the potential to transform understanding of care and patient outcomes in near-real time, to benchmark care against other providers and facilitate research and audit.”
Professor Mick Peake OBE, Chair of Cancer Data Network Advisory Group
Patient and public involvement in the Cancer Data Network
In the summer of 2021, DATA-CAN and IQVIA facilitated a virtual workshop on the CDN with a patient panel which included members of use MY data and the DATA-CAN Patient and Public Involvement and Engagement Group. The different voices and experiences helped to achieve a mix of perspectives. This created a better understanding of the views of patients and carers regarding the use of cancer data that is routinely collected by hospitals.
It was important for the CDN team to understand how comfortable patients were about this routinely collected cancer data being used in the CDN. Panel opinion was also sought regarding the concept of ‘fair value’ to the NHS and patients.
A series of polls were run throughout the workshop to assess the panel’s understanding of the CDN and of each of the solutions within it. Unsurprisingly, general understanding of CDN was low at the beginning of the workshop. This improved slightly towards the end of the first session and improved even further once each CDN solution had been discussed in more detail.
The use of non-identified patient data by the CDN for research services understandably raised the most questions. Despite this, 88% of the panel said that they were comfortable or very comfortable with data being used in this way when asked at the end of the session.
The panel felt they would like to better understand the processes IQVIA has in place for use of data in this way. These processes include the NHS Health Research Authority’s Research Ethics Committee review of IQVIA’s protocols for the CDN, and IQVIA’s Independent Scientific Ethics Advisory Committee (ISEAC), which approves all requests to use the CDN data for protocolised research. The panel asked about patient representation on the ISEAC and IQVIA confirmed there are lay members on this committee.
A final poll also asked panellists if, in their opinion, the CDN offered ‘Fair Value’ to the NHS and patients. 70% of the panel expressed a view that the CDN offered ‘Fair Value’ to patients and the NHS, with others requiring more information. However, it was clear that there is a need to explore the concept of ‘Fair Value’ further in future workshops.
IQVIA has started an ongoing programme with patients and carers throughout 2022 to further understand several areas, with a priority focus on:
- Exploring patient perception of the benefits of the CDN
- Understanding how to simplify messaging
- Exploring how to better articulate the benefits of the CDN.
“We were really excited to engage with patients directly and share our plans for the CDN. Although we are pleased to hear the significant majority of patients were happy with the work we’re doing to fight cancer and the privacy measures we have in place regarding how their data are used. We are keen to ensure that this kick-starts an ongoing programme of engagement with patients.”
Yoshiko Cook, CDN Lead, IQVIA
Engagement with multiple stakeholders
The CDN engages with multiple stakeholders on a routine basis, particularly through regular meetings with its advisory group as well as ongoing engagement with DATA-CAN and CDN members. For example, clinicians have had input into the development of the CDN dashboards to ensure they provide the insight that clinicians feel they would most like to see. Discussions with patients have also led to data fields, such as ethnicity, being prioritised for data inclusion and the Equality Impact Assessment being adopted within CDN. The Network continues to use feedback and input from members to help shape ongoing development.
DATA-CAN – Our Hub for Cancer
DATA-CAN is a UK-wide partnership that aims to unlock the power of health data to improve cancer care.
DATA-CAN, the Health Data Research Hub for Cancer, speak to BMJ Opinion on how they work with patients and the public
12 August 2021
Mark Lawler, Chris Carrigan, and colleagues describe how DATA-CAN’s co-created partnership has brought together patient representatives, healthcare professionals, and academic and industry...