Patient and industry partnership with IQVIA – workshop with patients
This DATA-CAN facilitated workshop connected the Cancer Data Network with patients and carers to enable a better understanding of the views of patients and carers regarding the use of cancer data that is routinely collected by hospitals.
IQVIA asked DATA-CAN to help them engage with a group of patients, relatives and carers around the Cancer Data Network (CDN), specifically sharing what it offers different stakeholders. It was important for the CDN team to understand the level of comfort about the use of cancer data routinely collected by hospitals, being used in the CDN. Panel opinion was also sought regarding the concept of ‘fair value’ to the NHS and patients. ‘Fair value’ is not yet well defined in the NHS. However, it is recognised that defining this in conjunction with patients is important to maintain public confidence in the way healthcare data is utilised by the NHS and researchers.
In the summer of 2021, DATA-CAN facilitated a virtual workshop with a patient panel which included members of ‘use MY data’ and the ‘DATA-CAN Patient and Public Involvement and Engagement Group’, with different voices and experiences, to achieve a mix of views and perspectives.
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. A final poll also asked panellists if in their opinion the CDN offered ‘fair value’ to the NHS and patients.
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 first solution discussed with the panel was Cancer analytics which enable hospital staff delivering cancer services to access a suite of interactive dashboards, which are built and viewed within the existing hospital infrastructure and are refreshed with data taken directly from the hospital’s systems every 24 hours. The dashboards are designed to provide insight into local cancer provision.
- 73% of the panellists were comfortable or very comfortable with the data that is routinely collected during patient care being used in this way
- Based on this feedback, IQVIA has planned further work with patients, which will be facilitated by DATA-CAN, throughout 2022. The aim will be to further explore the reasons why not all of the panel felt comfortable and also to understand how patient benefits can be best articulated.
Currently, the identification of patients who are eligible for clinical trials is predominantly a manual process in most hospitals. Trial matching within the CDN is designed to reduce the dependence on this manual search by enabling patient data to be matched to trial criteria through an automated system, saving staff time and increasing the accuracy of the search.
- The panel expressed that they are eager for clinicians to gain visibility of trials running at other hospitals as well as their own. This is something IQVIA is looking to offer in the future
- Overall, the group had very few questions on the use of the data for trial matching and polling showed 89% of them were comfortable or very comfortable with their data being used for this purpose.
A key part of the CDN is that it allows a hospital to compare itself against others. CDN Benchmarking will help hospitals identify variations in care as well as highlighting opportunities to collaborate and learn from other facilities.
- The panel could see the benefit of benchmarking with 90% expressing they were comfortable or very comfortable with their data being used for this purpose
- Most questions were related to the ‘national opt-out’ and whether it will be respected by the CDN. IQVIA confirmed that the CDN does respect the national opt out and that no data for patients who have opted out will be transferred from the hospital to IQVIA.
The use of non-identified patient data by the CDN for Research Services understandably raised the most questions, although 88% of the panel did express 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 further understand the processes IQVIA has in place for use of data in this way, including NHS Health Research Agency’s Research Ethics Committee review of IQVIA’s protocols for the CDN, and IQVIA’s Independent Scientific Ethics Advisory Committee (ISEAC) which has to approve all requests to use the CDN data for protocolised research. The panel asked about patient representation on ISEAC and IQVIA confirmed there are lay members on this committee.
In the final poll, 70% of the panel expressed that in their opinion the CDN offered ‘Fair Value’ to patients and the NHS, with others requiring more information. However, it was clear that in future workshops there is a need to explore the concept of ‘fair value’ further.
IQVIA has committed to work with a group of patients and carers in 2022 to further understand a number of areas, with a priority focus on:
- Exploring patient perception of the benefits of the CDN
- Understanding how they simplify their messages
- Exploring how to better articulate the benefits of the CDN.
If you are interested in getting involved in this work, please get in touch with DATA-CAN.
IQVIA thanked the participants of the workshop and stated their intention to keep engaging with patients and caregivers, and also to have an increased patient voice within 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.