STRETCHED

The main aim is to find out whether case management (which is the current way of managing these patients) reduces these peoples need to call 999.

The study gives the opportunity for patients, NHS Staff, third sector support workers and other care providers to tell their stories and describe their views of why people are calling 999 and what impact case management has on patients and service delivery. This will be achieved through interviews, and anonymous statistical data collected by each of the four ambulance services taking part, to help inform service providers on the current model of service and possible ways of optimising service delivery. It is hoped that this will improve patient experience and outcomes, and health and social care provision more widely.

The research is funded by the UK's National Institute of Health Research and led by Swansea University.

More information about this study, including how to opt out of the STRETCHED study, can be found below or the STRETCHED website.

STRETCHED research study - Privacy notice

This patient notification contains information about our research study STRETCHED - a study to see if people who call the 999 ambulance service often can be better helped and how it will utilise a patient's data.

1. What is the study about?

Ambulance services are assessing how they respond to the small number of people who frequently phone 999 (more than five times a month or 12 times in three months), but sometimes without a medical problem requiring immediate treatment. Some services have introduced local case management initiatives, with referrals to a team from different agencies (social services; primary care (GP); community mental health services; Emergency Departments; ambulance service) that devises individualised treatment plans, aiming to reduce callers need to contact emergency services.
We will study: the characteristics of people who call frequently; what is currently being done for them; what helps them to stay well and not need to call 999 or other emergency services; and assess how well case management helps them. Using routinely collected NHS data information for four ambulance services, we will: see if frequent callers have fewer emergency episodes when case management is available; gauge the safety of this method; and determine associated costs and savings. We will also interview: patients treated through case management to explore how they feel about this service; and health, social care and other professionals involved in case management to identify operational issues in providing such initiatives.

More information about our study can be found on the PRIME Centre Wales website. Our research is funded by the National Institute of Health Research.

2. What data will be collected and how it will be used?

Ambulance services 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, 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.

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, NHS Wales Informatics Service and UKSeRP. Your 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 Wales Research Ethics Committee 4 (19/WA/0216) and the Confidentiality Advisory Group (19/CAG/0195).

4. How we will 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 for interested parties including:
Our funder - NIHR
Ambulance staff who participated in the focus groups
Other study stakeholders, including patient and public involvement representatives

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 Research paramedic Tessa Mochrie in writing by email at: tessa.mochrie@eastamb.nhs.uk or by telephone on: 07514973667 your care and treatment will be not be affected by choosing to opt out of your data being used in the study.

6. What if there is a problem?

Please contact:

Study Manager -

Dr Rabeeah W Aslam

ILS2, Swansea University Medical School, Swansea University, SA2 8PP

Email: r.w.aslam@swansea.ac.uk

Telephone: 01792 606464

Chief Investigator -

Professor Alan Watkins

209, ILS2, Swansea University Medical School, Swansea University, SA2 8PP

Email: a.watkins@swansea.ac.uk

Telephone: 01792 513410

Swansea University Data Protection Officer -

Mrs Bev Buckley

Data Protection Officer, Vice-Chancellor's Office, Swansea University, SA2 8PP

Email: dataprotection@swansea.ac.uk

Telephone: 01792 606281

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