Message in a Band (Phase 2) helps overcome "Patient Unknown"

When a paramedic attends a patient who is unable to communicate and no-one present knows his/her identity, the patient will have to be labelled “Patient unknown” on arrival at hospital. This can potentially have negative consequences for ongoing best critical care of the patient.

(1) first responder's should be able to call the patient by their preferred name - it can help to improve a patient’s response to treatment (the patient’s name is considered by most paramedics to be really important)

(2) without any identifying information the patient’s family could not be informed thus miss the opportunity to be with them in difficult times, perhaps in the last few hours of their life

(3) if a Patients medical history is not available to the ambulance service or hospital staff, speedy and reliable treatment can be compromised 

(4) if the patient is a carer for dependents at home they may suffer if the patient does not return when expected.

See the following video clip from a recent TV documentary of a paramedic from West Midlands Ambulance Service Trust commenting on "Patient unknown" during transportation to hospital.

"Message in a Band" helps to avoid the above and provide a wealth of relevant patient information in an emergency.

The key notes of this ICE project reappraisal are “Less is more” and “Keep it simple”.

When the ICE project was first conceived at Mayflower Rotary Club in Plymouth four years ago, we had little idea how complex it could potentially become as we considered many options for Phase 2 and their individual strengths and weaknesses. Many of these options are covered in my two articles published on LinkedIn in January of this year (links at the end of this article).

After more research of service users, professional and public first responders we became aware that so much of established thinking may have been either exaggerated, a myth or, that with new practices and technology, the world had moved on significantly even over the past four years.

To simplify this project and increase its appeal to all parties we have stripped away so much of what we now feel is unnecessary: redundant features; expected to be included based on "custom and practice"; over specified; more expensive to implement than is necessary. This is why we are making the following eight changes:

(1) Global approach OUT - we are now concentrating on primarily UK NHS Trusts already established along with current service availability (most GPs put a patient’s Summary Care Record (SCR) onto a national NHS data base for access by those authorised to do so in an emergency). Thus, there appears to be no need to fully duplicate patient record information, however, the information on the ICE Sheet can still be used outside the UK giving vital information to first responders anywhere, along with the patient’s Prescription Medication Record (PMR) issued by the GP with any prescription and sufficiently detailed for clinical staff to use and small enough to be folded and inserted into the wristband tube along with the ICE Sheet

(2) Customised record approach OUT - we are now concentrating on cutting the scope and size of information retained by the patient on the ICE Sheet to its absolute minimum (10 lines is the current thinking, instead of over 107 lines)

• 3 lines of patient identity information for data base access by emergency clinicians or any flagged up key information against the post code on the Ambulance IT systems (the PMR also has this so in some cases a duplication) 
• 1 line for patient ICE contact details (family, carer, friend or neighbour) restricted to one contact 
• 1 section if the patient is a carer of dependents, particularly other vulnerable people at home alone
• 1 section to establish if there is a communication problem (deaf, blind, speech impediment, cognitive difficulty or have a different language)
• 1 section for patient’s medical condition(s)
• 1 section for allergies and for anaphylactic patients
• 1 line for medication particularly blood anti-coagulants drugs (the PMR also has this in much more detail so in some cases a duplication) 
• 1 section for patient’s GP’s name/practice (the PMR also has this so in some case a duplication) 

Note: Three important objectives of the record are:

a)   important for patient reassurance (holistic care approach);

b)  to make Social Services aware of other vulnerable dependants at home

c)  improve patient communication with a paramedic should they are unable to respond

ICE Sheet pages 1 and 2 printed on the reverse side using a smudge and waterproof paper

Prescription Medication Record (PMR) and ICE Sheet information list of stored data

Bundles of paper patient records from "Craddle to Grave" are no longer viable in the future NHS

Over the next ten years, DoH & NHS are aiming to connect more than 100,000 doctors, 380,000 nurses and 50,000 other healthcare professionals by linking over 30,000 GP Surgeries to almost 300 hospitals in England. But this objective can only be achieved by replacing the current patchwork of paper records with Electronic Patient Records (EPR) for each of England's 50 million patients. Patient electronic "Summary Care Records" (SCR) launched less than a decade ago has produced a data base that all NHS clinical staff can potentially input. share and access the information.

Summary Care Record (SCR) - automatic data summeriseing by GP's

If you are a patient and registered with a GP practice in England your SCR is created automatically, unless you have opted out. 98% of practices are now using the system. Patients can talk to there practice about including additional information to do with long term conditions, care preferences or specific communications needs.

Health and care staff can access SRC through the Spine web portal. Patients can ask to view or add information to their SCR by visiting their GP practice. .

Access to SCR information means that care in other settings is safer, reducing the risk of prescribing errors. It also helps avoid delays to urgent care by the Ambulance Service and Hospital A&E.

At a minimum, the SCR holds important information about us including the following;

• current medication
• allergies and details of any previous bad reactions to medicines
• the name, address, date of birth and NHS number of the patient

The patient can also choose to include additional information in the SCR, such as details of long-term conditions, significant medical history, or specific communications needs.This means patents can input almost all the information on the ICE Sheet at there GPs and gain access to there own SRC from any computer (user name and password protected). Not sure if the NHS IT systems would allow access from outside of the UK? If it did husband and wife traveling on holiday outside the Country can having access to each others entry password to access there SRC anywhere for urgent or critical care.

From 1 July 2017, the General Medical Services (GMS) contract requires GPs to identify patients with moderate or severe frailty, and promote the inclusion of additional information in the SCRs of those with severe frailty by seeking their consent to add it.

The NHS, SCR system is moving in the direction for all vulnerable people to have a comprehensive digital record accessible ANYWHERE, potentially making the ICE Sheet redundant. It is not clear if the SRC allows photo graphs of the patient to be added for patient identity?

SCR security. Data within the SCR is protected by secure technology. Users must have a Smartcard with the correct codes set. Each use is recorded. A patient can ask to see the record of who has looked at their SCR, from the viewing organisation. This is called a 'Subject Access Request' (SAR).

Patient data is protected by strict information governance rules and procedures. Each organisation using the SCR has at least one privacy officer who is responsible for monitoring access and can generate audits and reports. A patient can also opt out of having an SCR by returning a completed opt-out form to their GP practice.

Enhanced Summary Care Record (SCR) - include significant medical history and procedures, anticipatory care information 

Enhancements to the SCR mean that a set of additional information from the GP record, in addition to medication, allergies, and adverse reactions, can now be easily added to support the delivery of person centred co-ordinated care. Enriched SCRs include significant medical history and procedures, anticipatory care information, immunisations, end of life care information and communication preferences. 

The enhanced functionality to create enriched SCRs is simple. The whole process is easy and takes less than a minute to do. Consent from the patient can be gained by GPs, nurses, healthcare support workers or a receptionist. I can be confident that significant information from the patient’s record will be instantly available within their SCR. I can record information once and share it easily, which is fantastic!

Table shows the development and potential evolution path of the NHS Summary Care Record

Informed Decisions - Enriched SCRs are especially helpful when treating patients within an urgent and unscheduled care setting. As an Out-of-Hours GP reported in an article:

"I know the importance of making sure essential patient information can be accessed. My patients don’t just have problems from ‘nine to five’. They need and deserve high quality, informed healthcare whenever it is required. In the past, there has been a lack of information to support patients when they receive care away from their GP practice. Patients feel frustrated at being asked to repeatedly provide the same information and often find it difficult to recall this clearly. Sharing information such as patient preferences or plans for future care supports both me and my colleagues to really understand patients, their circumstances and their choices".

(3) Separation of key system parts is OUT - we are now concentrating on combining the "information storage" with the "signpost" in a single place, a wristband (avoiding the record not being retained on them at all times in public places

Folded ICE sheet - inserted into the wristband tube, for retrieval by Paramedics

(4) High tech access methods are OUT - we are now concentrating on a universal user friendly paper based recording and access method (avoiding RFID, QR codes, and electronic ways to record and view information).

(5) GPS location sharing is OUT - this was a half measure originally as it can only share the location between the first responder and carers. The missing person has to be found first and may not be able to involve first responders, if lost in an isolated area (for those with dementia or cognitive difficulties they should ideally carry a "GPS tracker" - which is outside the scope of this current phase 2 project).

Even without a tracker facility this project offers a system comparable or better than other methods including "QR finger nail stickers from Japan" (need for a scanner and data base) and "QR labels" with patient identification/ICE information. https://ifineedhelp.org/ (need for a scanner and constant availability in plain sight)

(6) Cater for multiple languages is OUT - not ideal in a cosmopolitan country like the UK. However, we have kept to English for the time being which is the policy followed by other UK health care organisations (NHS Trust publications) for primary text. If the patient’s first language is not English it is recorded on the ICE sheet under communication problems, so that the Paramedic can access a relevant translator (minority groups in the UK sometimes have patients who speak no English

(7) Band with a large paper storage internal profile is OUT – with only 10 lines of information at a minimum of 14 point text/writing (for visually impaired) the profile can be reduced by 24% increasing comfort, reducing material cost and improving aesthetics

The initial ICE Sheet was four times larger than the New ICE Sheet offering a smaller wristband profile as shown below.

(8) Wristband warning flashing light and sound to attract the First Responder IN With comments from some Paramedics that they do not look for ICE products, a flashing light will help to ensure they take notice, look and retrieve. This assumes the patient is aware that they are feeling unwell and likely to become unconscious and have cognitive powers to activate the flasher.

In addition an audible sound device (recorded message repeated) familiar to members of the public will also be installed to further increase and to ensure that members of the public will step in to help once the flashing light (showing the way to the patient information) and sound highlighting the plight of the wearer and highlights the wristband and to look inside. A message could typically say; "Please help me I am not feeling well...., Please look inside my flashing wristband".

For visually impaired patients the warning sound is important as they may not be able to see the flashing light and, for deaf patients they see the flashing light but may not hear the sound message.

Phase 1 trial research parameters 

Broad objectives

Ultimately this project helps to reduce the fear of being alone, in trouble, unable to communicate in public places and not knowing if loved ones will be informed.

The benefit from this patient information retrieval product is to help them to protect their health and lives ANYWHERE (particularly in public places) and facilitate greater patient mobility and peace of mind for both the patient and their family or carer, typically those who are lonely or elderly reluctant to leave home missing out on physical and mental stimulation from social interaction.

People need a product that meets a higher specification, which can be worn anywhere in diverse situations or wet, damp or sweaty environments without detriment to the stored information – typically when at home washing the dishes, asleep in bed, showering, playing sport, out shopping or swimming any of which can be the location of an emergency (even if unclothed the first responder can still identify them from the band’s collective information.

Key Messages

Patients have concerns, even anxiety, when alone in public places in not being able to communicate fully one or more of the following key messages to Paramedic or First responder. They should also be the key messages to communicate with Paramedics and noted in any awareness campaign to encourage vulnerable patients to use.

• I speak a different language
• I have cognitive or learning difficulties
• I have a speech impediment
• I have hearing difficulty
• I am visually impaired
• I am a carer for someone at home who is housebound
• I have an appointed key holder for my home
• contact details are available to call a family member or friend to inform them that I am ill in hospital 
• I have a pet at home with no one to take care of it
• I have one or more medical conditions and take medication
• I have an allergic reactions to some medications
• I have a donated organ
• I have donated an organ
• I, or my carer on my behalf, have signed the ICE Sheet to authorise its use

Service users targeted

• UK citizens registered with the NHS
• UK citizens travelling outside of the UK (limited to info stored)
• vulnerable adults, typically the elderly (children are not included at this stage, although a adult band will fit most teenagers)
• prediagnosed medical condition, including organ transplant patients
• communication difficulties, visually impaired or deaf
• anyone with allergies
• patients on strong or high dependence drugs (including blood thinners)
• people with learning or cognitive difficulties
• vulnerable carers with dependants at home afraid to leave their home fearing illness and inability to communicate that they have dependants at home
• people who cannot afford existing ICE product offerings
• where patients are expected not to be able to carry adequate identification.
• people who cannot, or do not, wish to use the internet or electronic devices
• patients who have concerns about security of their personal information
• patients who have a wider range of vulnerabilities beyond just the medical, including communication, learning, mental and social difficulties
• those with dementia unable to retain information (e.g. name or where they live)

Key benefits

• take away the service users ability to pay - FREE or low cost < ￡2
• reduce patient, carer, first responders and GP’s confusion over which system to use
• use economies of scale to reduce cost by supplying a universal offering
• use the strength of carers and service clubs to achieve the above – by using volunteers who have knowledge, experience, contacts and enthusiasm to share

• a minimisation of the band’s physical size improving both comfort and aesthetics 
• avoids the controversial primary market alternative systems.

Controversial primary market alternatives recommended to avoid and WHY

(1) those intrusive to the body (typically a chip injected into the arm or hand)

(2) those that cannot easily be removed (unless surgically) or

(3) those that the patient has no control over the content or security

(4) those that risk body damage in proximity to high levels of electromagnetic fields

(5) those that are not wholly controlled directly by the patient or indirectly by the patient’s nominated family member(s) or carer(s) and can be edited or removed and discarded at any time

(6) those that separate the information and signpost

Examples of potential wristband colour and artwork options can be provided (show below)

A standard silicon extrusion profile will be supplied, however, any colour and printing detail can be provided ideally suited to specific vulnerable group sponsors. If printing is requested a cut marking scale can be provided to safely measure the wrist before fitting.

Strategic objectives and aspirations

This project should help to inject some enthusiasm to help coordinate stakeholder effort, and encouraging them to work more closely together in a common cause.

To provide better insights to the key issues raised in my last two articles for a complete reappraisal of the project, and implement its conclusions which are covered in this article. 

The future appears to provide a low cost silicon band that is hollow to receive a water proof strip of paper with the six pieces of info mentioned above. Please ponder and hold that thought because the project research listed above lead us down this path.

The key stakeholders in the successful initial introduction of this project will be one or more of the 7 English Ambulance Service NHS Trusts: East Midlands, East of England, London, North East; North West; South Central and South Western, plus the other three in Scotland, Wales and Northern Ireland. Objective is to gain approval and agree a partnership for each Trust.

It is hoped for “Message in Band” to become a registered charity to secure funding to make it possible to produce mould and extrusion tooling and provide start up quantity of kits for the UK market, initially targeting at a low price, vulnerable patients, the elderly and those lonely and afraid to leave home.

After Phase 2 is implemented the project is planned to move to Phase 3, focusing on;

(1) combining a dedicated low cost GPS tracker transmitter into the wrist band connector. Setting a target under ￡15.;

(2) Resolve any Safeguarding issues before distribution to children, the band can be cut to length so can be implemented almost straight away.

The following project time line is an estimate of Phase 2 - Stage 1 (paper + wristband only) hoped to be in production by late spring next year (6 months) this is achievable. Phase 1 took 2 months for 6000 packs but this did not include tooling.

Frequently asked question. Could "Message in a Band" be developed to help those missing outdoors who have Dementia, Alzheimer's or any other cognitive disability? YES

The only truly effective way to find a lost and isolated vulnerable person with cognitive difficulties is to use a GPS tracker. All relevant professionals, especially the Police, will tend to support this view.

The debate will be what type of tracker? A smart phone which can easily get lost or stolen or a concealed electronic device both are commercially available requiring a transmitter (for the patient) and a receiver (for the carer). They are expensive running into hundreds of pounds. Unfortunately only a few patients wealthy enough can afford to buy GPS trackers and certainly not the bulk of the vulnerable elderly retired service users, hence a strategy to keep the price low.

 Research has suggested Dementia patients typically react when able to leave their place of safely, will walk and get disoriented, effectively lost wandering around; perhaps lightly dressed for the weather conditions; looking dishevelled and confused. Anxiety is likely to set in and in a confused state the patient might go to a past familiar place buy walking long distances or getting on a bus making finding them even harder as the search area becomes larger pulling in more resources. The fact that concerns most Dementia patients when lost is to go to ground in search of a safe place, making the Police search teams work almost impossible without a tracker to identify the location very quickly especially in adverse weather conditions.

Patents that are lost are likely to act in a way that should be obvious to the public. After witnessing this behavior it is hoped any member of the public would approach that person enquiringly if they need help. 

If a Dementia patient is anxious they might not have sufficient cognitive power to activate a flashing light and/or recorded voice message coming from the "Message in a Band" connector body of the wristband. So more research is needed.

We have added, under section 8, a flashing light and audible device, as an option at a few pounds. This is an innovative practical solution to create awareness among the public that this person unmistakably needs help. I believe the families and Police might agree.

Project Management

Please comment to this article if you wish to help in any way; email [email protected]

Related articles

Information retrieval system for greater patient mobility (under development) 

https://www.dhirubhai.net/pulse/information-retrieval-system-greater-patient-mobility-ray-foss 

Japanese city keeps track of dementia patients with QR code nail stickers 

https://www.dhirubhai.net/pulse/japanese-city-keeps-track-dementia-patients-qr-code-nail-ray-foss 

Agewell Foundation related campaigns focusing on the isolation and loneliness of the elderly