Information for the Public

Emergency Department Number - In some hospitals this is a number assigned to a patient when they come to the Emergency Department (ED) and 'book in'. This number represents that single presentation to the ED only, unlike the patient's hospital number or NHS number which represent their whole record.

Hospital Number - Some hospitals do not use ED numbers and so the medical record number which represents a patient’s whole medical record at that hospital needs to be used at these hospitals.

NHS Number - In order for us to identify which patients do not wish to be involved, we need to store and process NHS Numbers. This is a requirement of the National Data Opt Out Policy (https://digital.nhs.uk/services/national-data-opt-out) and helps us respect the wishes of our patients..

Age - It can be difficult to determine a patient's age at the time of assessment if they are unable to communicate. Disclosing patients' ages allows us to look back and identify if any age groups and diseases have particularly high numbers of requests. Knowing this means we can identify potential teaching topics for a wider number of clinicians. For example, head injuries resulting from falls from standing in the elderly, or difficulty breathing caused by croup in children.

Sex/Gender - Some diseases happen more in males or females and, similar to the examples above, we can look back on the requests from prehospital staff to identify topics that may require further teaching across the region. The project respects that patients' gender identities and expressions can be very sensitive and will include these only if pertinent to the learning points of the case.

Relevant features of the clinical history, examination, investigations - More information comes to light with each subsequent assessment of a patient. Prehospital clinicians make clinical decisions based upon advanced physical assessments, but they are unable to definitively confirm specific injuries or illnesses in some cases. These diagnoses may only be confirmed after diagnostic investigations are performed in hospital. We aim to provide extra information from the in-hospital phase of care to help prehospital clinicians understand what it was they were seeing at the roadside and in the community so they can prepare for the next time they encounter that presentation.

Similarly the results of some specialist hospital investigations or examinations which are not available to the pre- hospital clinicians may be enormously beneficial for understanding why the patient was so unwell or why a particular treatment did not work. Only parts of the history(ies), examination(s) and investigation(s) which are relevant to achieve appropriate learning objectives will be disclosed. Not all aspects of a patient's past medical history (such as sexual history) will be relevant to understand the important learning points of the case and therefore do not always need to be included in the reports we make. We have a list of ‘sensitive diagnoses’ which we only disclose if necessary for the learning.

Hospital management and treatment - Making quick decisions for unwell patients can be extremely difficult and sometimes, despite excellent training and following appropriate processes, treatments provided by prehospital clinicians don't work as well as hoped. Understanding what was learned by the in-hospital team from test results, administering different medications, performing surgical procedures etc. can help shed light on what was actually happening to the patient.

Diagnoses from the Emergency Department and/or on discharge - Similar to above, sometimes prehospital clinicians don't get the right diagnosis due to challenging conditions or rare diseases, and sometimes they do but they never get to find out they were right. It is important to ensure they have access to this information to find out how they improve in future or how to reinforce their good practice.

Condition of the patient and destination on discharge, including death and disability - Sometimes, despite our best efforts patients go on to need prolonged rehabilitation, to reside in higher care facilities like nursing homes or they die. Health care providers are human beings who want their patients to have good outcomes. They want to understand whether their patient did well or not, and to try to find out whether someone who seemed well then unexpectedly went on to have a poor outcome, or someone who looked like they may not survive went on to have a great outcome. This information helps clinicians to reflect on the case, recognise the unwell patient and finesse their risk assessments.

Measurement of time which the patient survived (if subsequently deceased) - Sometimes patients' injuries or illnesses are so overwhelming they cannot survive and understanding whether that was immediately in the ED or after several weeks of becoming weaker is useful to understand. It may be that the prehospital clinician hears a patient has died and fears they did a bad job but it is nothing to do with the care they provided and which actually helped the patient survive much longer than they would have without help.

It would be ideal to consent patients to share their information but this is not always easy. As a result we have been granted support to proceed without consenting patients, a decision we have not taken lightly.

When considering a consent-based method in 2017, we learned that over 97% of our patients were no longer in the hospital 7 days after their initial presentation. This makes consenting patients very difficult given the length of time which can elapse before a request for information is received from the ambulance or air ambulance service.

Often patients have been discharged, moved from smaller hospitals to places like specialist Stroke Centres or Major Trauma Centres, are unconscious from head injuries or have another reason why they cannot consent. They may also be busy having meals, personal care, medical review or medications administered which must not be disturbed.

We are not allowed to 'cold call' patients to ask for permission to pass on their confidential information after they have left the hospital either.

We also want to ensure that groups of patients who may be unable to consent including those with cognitive impairment, brain injuries, intellectual (”learning“), communication difficulties, and children are served by prehospital clinicians who have learned from people with similar needs to them. This would be much more difficult if we had to consent every patient.

In order to achieve the maximum learning within the resources PHEM Feedback has, we have been supported by Shaping Our Lives, Patient Panels, the Health Research Authority and The Secretary of State for Health and Social Care to use a dissent (opt-out) rather than consent-based model. We have demonstrated to these organisations and representatives that we share clinical information in an accountable, proportionate and responsible fashion. This sharing is done to provide the most learning to the greatest number of prehospital care providers in order to improve the healthcare provided to our community and the patients we serve.

Patient privacy and the trust of our patients is of paramount importance to us, as is respecting the wishes of our patients.

If you would like more information to reassure you of our practices as either a patient or a patient group representative please contact us.

Alternatively you can exercise your right to withdraw your participation from this project (known legally as dissent). If you would like to do so please include the following information so that we can identify you and then add your NHS number to our register. We do this to make sure we don't accidentally add the wrong person to our register.

Necessary:

• Full name
• Address
• Date of birth

Helpful additional information:

• NHS number (if known)
• Local Hospital number (if known)

Alternatively, you can visit https://www.nhs.uk/your-nhs-data-matters/ and “make your choice”

Options for opting out of your data being used for NHS research and planning can be found at https://www.nhs.uk/your-nhs-data-matters/manage-your-choice/other-ways-to-manage-your-choice/

When exercising your right to dissent, please do not submit your personal details via the "contact us" page as it goes through an external computer system where your details may be stored outside our control. We will still complete your request should you choose to use this method but we strongly advise you do this through the means below.

Please follow the link to your local hospital's website below. All hospitals which are currently participating in the project are listed. On this website will be local details of patient advocacy groups and how to directly contact the PHEM Feedback Site Lead at that hospital.

Once we have added your name to the 'Dissent List' we will delete your email or destroy your letter. This ‘Dissent List’ will be updated and shared between all hospital sites so that another hospital does not inadvertently share your information on another occasion. Your NHS number will the only identifiable piece of information stored for this purpose We may, however, record some of the reasons cited for wishing to opt out to help us better understand the concerns our patients have about our project. These will be stored anonymously so they can be discussed with the hospital's patient groups and PHEM Feedback patient representatives.

Please consider asking for more information on our processes before opting out. Local and national patient groups are impressed with our data processing practices and legal basis for conducting our work and we value the opportunity to clarify any concerns which our patients, patient advocates or potential patients may have.

How to notify your local hospitals

Princess Alexandra Hospital NHS Trust, Harlow Essex

By post
PHEM Feedback Site Lead
C/o Emergency Department Secretaries
Emergency Department
Princess Alexandra Hospital
Hamster Road
Harlow
Essex
CM20 1QX

By email:
tpa-tr.phemfeedbackpah@nhs.net

Watford General Hospital

By post
PHEM Feedback Site Lead
C/o Emergency Department Reception
Vicarage Road
Watford
WD18 0HB

By email:
westherts.phem@nhs.net

West Suffolk Hospital

By post
PHEM Feedback Site Lead
C/o Emergency Department Reception
Hardwick Ln
Bury St Edmunds
IP33 2QZ

By email:
phemfeedback@wsh.nhs.uk

This register is checked before ANY report is started and a person's decision to dissent will have no impact on how that person is treated if they were to ever require care at any of our partner hospitals or by any of our partner prehospital care organisations.