TRIM Patient privacy Notice

Patient Privacy Notice v0.3 8/10/2020

This patient notification contains information about our research study TRIM, which is looking at how ambulance services responded to 999 calls for suspected COVID-19.

1. What is the study about?

COVID-19 has presented huge challenges to ambulance services management of 999 calls. They cannot always send an ambulance to every caller within a reasonable timeframe, and not every patient with suspected COVID-19 will need to be taken to hospital. Some patients not sent an ambulance or left at home could suffer harm or death, whereas taking every patient to hospital may overwhelm hospital services.

Ambulance services introduced new processes to decide how to respond to suspected COVID-19 cases, to try to take the right patients to hospital and to leave the right patients at home. The triage processes have varied between ambulance services in different parts of the country, and little is known about what approach works most safely and effectively during a pandemic. The TRIM study aims to provide evidence about safety and effectiveness of triage models to inform future policy and care.

We have surveyed ambulance services in the UK to categorise the triage models used in ambulance call centres and on arrival with patients during the 2020 pandemic. Using the survey findings, we have invited four services that used different COVID-19 triage models to participate in further study. In these selected sites, we will retrieve outcomes of (anonymised) patients from NHS datasets, including: deaths; hospital admissions; Emergency Department attendances; and COVID-19 diagnosis. In each site, we will interview health service staff to understand experiences and concerns.

The research has received government funding through a special rapid response research programme (the UKRI-DHSC COVID-19 Rapid Response Rolling Call. Find more details of the funding programme.

2. What data will be collected and how it will be used? As part of this study, ambulance services will collect personal data (name, address, postcode, NHS number, date of birth and gender) for data quality and data linkage purposes. The research team will only receive pseudo identifiers - a long sequence of letters and numbers that enables us to link the datasets in question - age (not date of birth), and gender. It will not be possible for the research team to identify any patient from this code. The research team will not carry out any automated decision making or profiling using your information. Inclusion in this study will not affect the care you receive in any way.

For each study ambulance service, we will identify one large hospital in its catchment area to identify cases with confirmed COVID-19 diagnosis and recorded hospitalisation or death. At each site, research paramedics or nurses will collect identifiable data related to the care and outcomes of patients with suspected (ambulance services) or confirmed (hospitals) COVID-19 and link data locally as well as sending split files (identifying information separated from clinical information) to NHS Digital. Research paramedics at site will also gather information about COVID-

19 related adverse events from complaints; coroners requests and ambulance service systems. They will collate reports and send them in anonymised format to the Swansea based research team for analysis.

Data processing is carried out under Articles 6 (1) (e) and 9 (2) (j) of the General Data Protection Regulations (GDPR). Data will be stored in a secure environment within Swansea University and only accredited researchers will have access to this data. Patient level data will not be shared with any other person or organisation. Study outputs will only report grouped data, and we will ensure that individuals cannot be identified in them. Data security arrangements within Swansea University conform to standards specified by the Health Research Authority, NHS Digital, and UKSeRP.

Data will be archived for 5 years following the study.

3. Who has reviewed the study?

Our research has been approved by the Health Research Authority, following review by Northwest - Preston Research Ethics Committee (IRAS reference 285902).

4**.How will we report our findings?**

At the end of the study, we will publish our results in peer-reviewed, Open Access academic journals, ensuring that anyone who wishes to can access the results free of charge. We will also present the study at relevant emergency and urgent care conferences. In addition, we will produce an end of study report and a separate summary document for the public, for our funder, for participating sites and other stakeholders. It will not be possible to identify any patient from the published results.

5.Your rights

You can opt-out using the national data opt-out service that allows people to opt out of their confidential patient information being used for research and planning. More information on this is available on the NHS Digital website.

If you do not wish your data to be used in this study, or if you wish to exercise any of your rights under GDPR, please contact: Shona Brown, Research Paramedic,

East of England Ambulance Headquarters

Whiting Way

Melbourn

Cambridgeshire

SG8 6EN

or by email at: shona.brown@eastamb.nhs.uk

Your care and treatment will not be affected by choosing to exercise opt-out rights over your data.

6.What if there is a problem?

Please contact:

Study Manager -

m.r.kingston@swansea.ac.uk

Chief Investigator-

a.watkins@swansea.ac.uk

Swansea Universitys Data Protection Officer

Thank you for taking the time to read this patient notification and for taking an interest in this research study.