The lack of access to accurate patient information has repeatedly been shown in the literature to pose a significant challenge for paramedics assessing and managing people receiving palliative and supportive care at home (Brady, 2014; Allsop et al, 2021; Goodwin et al, 2021; Murphy and Van der Velde, 2022). Available information can vary in terms of detail, consistency and accuracy (Patterson et al, 2019; Peran et al, 2021), often leading to unwanted and potentially avoidable hospital admissions (Goodwin et al, 2021; Simpson et al, 2023). Without access to accurate and up-to-date information, paramedics perceive that they often have no choice but to transfer the patient to hospital (Standing et al, 2020). A recent systematic meta-review highlighted that digital healthcare records for palliative patients hold significant potential to improve patient care (Finucane et al, 2021).
In 2008, a UK palliative and end-of-life care strategy (Department of Health and Social Care (DHSC), 2008) announced that electronic palliative care coordination systems (EPaCCS) would be introduced as a mechanism for improving coordination of care for people with palliative conditions, with a view to be rolled out nationally by 2020 (DHSC, 2016). An economic evaluation in England in 2013 estimated that using EPaCCS could save £133 200 in hospital admissions alone, per annum per 200 000 patient population (NHS Improving Quality, 2013). However, since then, there has been no national standardised approach, and it has been acknowledged in the literature that implementation of an NHS-wide solution would be challenging, both financially and logistically (Patterson et al, 2019).
Although it is clearly documented that the implementation of EPaCCS, or other digital healthcare record for palliative patients, has the potential to significantly improve patient care and decrease healthcare costs, there continues to be a lack of evidence relating to the format and information content of the electronic palliative care record. Each system currently in use in England has its own template and most articles refer to the content of the EPaCCS as ‘variable’ (Standing et al, 2020). One study found that of those patients with an EPaCCS record, fewer than one-third had key information relating to their preferences of care documented (Birtwistle et al, 2022). The majority of content is described as advance care planning (ACP) including preferred place of care and preferred place of death, or do not attempt cardiopulmonary resuscitation (DNACPR) documentation (Patterson et al, 2019; Standing et al, 2020; Goodwin et al, 2021).
Furthermore, there is limited evidence of other potentially beneficial content, such as pertinent medical history, baseline clinical observations or parameters and contact details for healthcare professionals (HCPs) providing community-based care (Patterson et al, 2019). Research was required to understand what needs to be in place to maximise benefits and avoid harms (Leniz et al, 2019). Although it is important to acknowledge the different informational needs of the various healthcare roles, any EPaCCS should be completed with paramedics and other unscheduled care professionals in mind, to ensure that relevant patient information is completed to a standard where it is clinically useful and can inform their decision-making (Standing et al, 2020; Simpson et al, 2023).
Harding et al (2023) published a non-peer-reviewed blog on an initial quality improvement study. It sought to ascertain the views of patients, who were deemed palliative as a result of advanced end-stage organ failure, on the QR code wristband system as a way of sharing their information with emergency HCPs. An example QR code wristband, linked to a ‘test’ patient site was shown to patients and its capabilities were demonstrated. The results were overwhelmingly positive, revealing that QR code wristbands are acceptable to people with palliative organ failure and could offer a potential solution to the inaccessibility of important medical information. Therefore, having determined this utility, these initial findings, along with the narrative literature review of what is already known (on p. 14 of the current issue), informed this study.
The aim of this study was to explore the views and attitudes of ambulance clinicians (including paramedics, emergency medical technicians (EMTs) and advanced paramedic practitioners (APPs) towards an example electronic palliative care system using QR code technology. More specifically, the authors sought feedback on the content and format of information on such a system that may support ambulance clinicians' clinical decision-making when attending people with palliative-care conditions.
Methods
Study design
The present study employed qualitative methodology involving focus groups. Homogeneous focus groups were set up to encourage group interaction, gain deeper insight and understanding of specific aspects, and encourage group sharing of ideas (Kitzinger, 1995).
Informed consent
Participants were provided with a study information sheet and gave written informed consent prior to participation.
Ethical approval
All procedures were performed in compliance with relevant laws and favourable ethical approval was gained from the Cardiff University School of Medicine Research Ethics Committee (SMREC 24/20).
Setting
Participants were recruited from the Welsh Ambulance Service University NHS Trust (WAST) in South Wales, UK. Participants had voluntarily signed up to a palliative-care teaching day and were then invited to participate in the focus group.
Participants
Inclusion criteria meant that all participants were over the age of 18 years and they all worked for WAST as either paramedics, EMTs or APPs. A short questionnaire on sociodemographic data was completed to include sex, age, professional group and years of working experience. Participants were shown a 3-minute video demonstration of an example QR code wristband system linked to a ‘test’ patient site on which information such as patient demographics were available.
A QR code-based wristband system could enhance palliative care efficiency, outcomes and clinical decision-making
Data collection
Each focus group was then asked three open-ended questions to aid discussion (Table 1). The focus group ended when the participants and facilitators felt that there were no new topics of discussion. The research team comprised expertise in palliative care and ambulance services. The focus groups were facilitated by the third and fifth authors (EOB and NP), and field notes were collected by the lead and second authors (EH and SS). The focus groups were audio-recorded, transcribed verbatim by the lead author (EH), cross checked by the second, third and fifth authors (SS, EOB and NP), anonymised, and then thematically analysed by the lead and fourth authors (EH and LS).
Focus group schedule
| 1 | What are your thoughts on using something like the QR code wristband to access information? |
| 2 | What information would help inform your decision making? |
| 3 | What formats would help you manage this information/for this to be easy? |
Data analysis
The six-step Clarke and Braun (2016) process for thematic analysis was adopted to develop and refine codes and themes from the data. This process involved familiarising with the data, generating initial codes, searching for themes, reviewing, defining, and naming themes, and producing the final report. By systematically coding and categorising the data, this approach ensured a comprehensive understanding and accurate representation of participants' perspectives. To ensure robustness, the lead and fourth authors (EH and LS) independently coded the data to identify themes that could help to minimise individual biases and ensure that diverse perspectives were considered. The final themes were then shared with one participant to ensure accuracy and resonance of the responses with their experiences.
Results
Two focus groups were held in June 2024, with a total of 17 participants (group 1, n=8; group 2, n=9), and lasted between 45 and 60 minutes. The participants comprised three EMTs, thirteen paramedics and one APP. All participants had a vast range of experience with both emergency and palliative scenarios, with a median length of WAST service of 12 years (range: 1–34 years).
Five themes emerged following analysis of the transcribed focus groups:
Each of these are presented in the following sections with illustrative quotations.
Improved access to patient information
Both focus groups emphasised the critical benefit of having immediate and accurate access to patient information through QR code wristbands:
‘Having access to that information could make a big difference.’
‘It adds clarity as well because sometimes you get information which isn't entirely accurate.’
This accessibility is crucial during crisis calls, particularly out-of-hours, and when there are no family members present to provide details:
‘Having the information we need in one place and easily accessible will make our jobs a lot easier and be a lot better for the patient.’
‘Especially if the patient is unresponsive and there are no family members there then we've got that bit more information that we potentially use.’
The QR code wristbands also reduce the need for patients to repeatedly provide information, thus ensuring more efficient patient care and decreased burden on patients and family:
‘It takes pressure off the families as well because they are obviously worried of their loved ones and sometimes they can't remember all that stuff. So with that really just being there, they can just, you know, they can concentrate on what they need to and we don't have to be constantly asking them.’
‘I think it's helpful for the patient as well because when they're not well and you're going to ask them bombarding questions and so forth if you've already got the information they have, it's going to really ease that difficult sort of interaction that you have with them at that point. You know that they can, you know what they've said. There are all the plans and it's there.’
Enhanced clinical decision-making
Both groups highlighted the importance of access to critical patient information in supporting timely and appropriate care decisions, particularly in emergency, unscheduled care situations:
‘Just knowing ceilings of treatment…causes for escalation, and this is a difficult one, but life expectancy…then that gives you a better idea to make your decision. Where is this just a sort of transient episode where there's reversible causes or is this, you know, leading towards the trajectory. That would be quite helpful.’
The information available needs to be comprehensive, succinct, and appropriate to the clinicians who need it (such as paramedics, APPs or EMTs) in order for it to be helpful:
‘There's too much information sometimes … there would be a need for us to be able to access the pertinent information rather than sifting through reams and reams of digital material trying to find out…what we really need to know.’
Information such as patients' details, medical history, medications, DNACPR status, lasting power of attorney, contact details for both family and HCPs, as well as patient wishes regarding treatment and preferred place of care, is essential for making informed decisions:
‘I use it quite a lot with my decision-making any way, the frailty score, so you know where they're at and you know is escalation within their best interests or is this just… part of the normal life process? So it's really helpful for us… It's a big part of the tool to use in your decision-making.’
‘As all clinicians, we will use a medical model of history-gathering. So if it was written in that format… past medical history is… drug history and then you list all the medication in that section. That's a way that we all understand sort of a clinical narrative. So you know we would be able to go through that a lot quicker because I know exactly what I'm looking for.’
‘The level of function that they are, but I think that would be useful… at the initial point of assessment it was this, and then we could obviously have ours…. And see that they have deteriorated then.’
Family involvement and communication
Both focus groups stressed the importance of involving families in a shared decision-making process:
‘Getting the family on your side is often a big part in determining if these patients are end of life.’
They also felt that a system such as the QR code wristband system could facilitate this by providing easy access to the necessary details to ensure that everyone is on the same page:
‘It's a bit of a tool to use with the family as well, to say, well look, we can maintain their dignity and their comfort here… you can see it here in black and white as well (paramedic gesturing showing platform on iPad to family), and that often helps with the family as well to come to terms with why we are wanting to leave someone at home as opposed to taking them anywhere.’
‘I think it's got the potential for families to be involved a hell of a lot more in having the information available to them as well… when we get that information up on our iPads, we can literally sit down with the family and sort of go through that information in black and white. So… I would imagine then, they'd potentially be more on board with the decision-making process.’
Participants felt that part of their role could also be to clarify what was documented if family members were unsure:
‘There might be things there that they don't understand… they might have looked 2 days ago and gone, well what the hell does that mean? Or, I didn't know this. And then, for whatever reason, we've been called and we could properly sit down and have a look at them. And I think that would be a positive.’
Format and usability
Practical considerations for the use and maintenance of the QR wristband system are critical. Both groups discussed potential formats for organising the information, such as tickboxes, subheadings, drop-down boxes, and sections:
‘Tickbox initially with yes they've got this then you can always go back and look in those folders/documents.’
Ensuring that the information is well organised and easy to navigate was noted by participants. This could possibly be achieved through layered information to reduce the risk of important information being difficult to find and the system becoming overcrowded:
‘That'll be fantastic because we're very good at following guidelines, flow charts, algorithms so just there in black and white you know, really helps your decision-making for us and not going in.’
‘We could end up with like, miles and miles of notes. We've got to read through. I think that's not going to be helpful. So if it could be… just different sections’
Concerns and challenges
Both groups discussed concerns regarding data governance and confidentiality, and the potential for information overload. The necessity to keep information current and secure was a shared concern, with a suggestion that only authorised personnel should be able to access the information.
‘Governance is an issue isn't it.’
‘Keeping it up to date.’
Also, the practicality of patients consistently wearing the wristbands was highlighted:
‘The only negative I can see with this is… patients tend to take them off and leave them and hide them.’
Discussion
This study is the first to examine ambulance clinicians' perceptions of a QR code-based electronic palliative care system. The analysis revealed five key themes: improved access to patient information; enhanced clinical decision-making; family involvement and communication; format and usability; and concerns and challenges. Ambulance clinicians emphasised the necessity of immediate and accurate access to patient information, particularly during crisis calls when family members may not be present. The system was seen as supportive of timely and appropriate care decisions, facilitating family involvement, and improving overall care efficiency.
The findings of this study align with previous research, indicating that digital healthcare records can improve patient care in palliative settings by improving education, decision-making, information provision, and communication (Standing et al, 2020; Finucane et al, 2021). Moreover, these results show that ambulance clinicians agree with claims that systems like EPaCCS have the potential to reduce hospital admissions and improve coordination of care for palliative patients (Standing et al, 2020; Simpson et al, 2023). The results around ambulance clinicians' concerns regarding QR code technology also align with previous research, which highlighted challenges such as the variability in record content and the need for a standardised approach (Standing et al, 2020; Birtwistle, 2022). This study adds to existing literature by identifying the critical elements that practitioners require, emphasising the importance of user-friendly, comprehensive, up-to-date information in a consistently easy-to-use and -interpret format.
Strengths and limitations
A significant strength of the present study is its focus on various ambulance clinicians including paramedics, EMTs and APPs, who are often the first responders in community palliative-care situations. By capturing their insights, the study provides valuable information on the practical needs and potential benefits of a QR code-based system. The qualitative methodology of focus groups and rigorous thematic analysis, allowed for an in-depth exploration of the participants' views, enriching the findings.
The study's limitations include the small sample size and its concentration on a single geographic area (South Wales, UK), which may limit the generalisability of the results. Additionally, since participants were ambulance clinicians attending end-of-life care teaching from WAST, there could be selection bias, as those with a particular interest in palliative care might have been more likely to participate. However, the use of the focus-group methodology provided the opportunity for the participants to share their knowledge and experiences, generating new ideas and suggestions of ways in which to implement and utilise the QR code wristband in practice.
Recommendations
Based on the findings, several recommendations are proposed. Firstly, the design of any electronic palliative care system should involve ambulance clinicians to ensure that it meets their needs. The system must be user-friendly and contain relevant, contemporaneous information to support clinical decision-making. Addressing concerns about data governance and ensuring the information's confidentiality and accuracy are essential. Pilot testing the QR code wristband system in a real-world setting is advised to identify and address any practical issues prior to broader implementation. Finally, ongoing training and support for ambulance clinicians and other HCPs using the system will be crucial to its success.
Conclusion
The present study provides an insight into ambulance clinicians' perspectives on an electronic palliative-care system, highlighting the importance of content and format of such a system. These clinicians clearly believe that such a system could significantly improve patient care. However, caution is needed to ensure that the system contains pertinent information in a user-friendly format and is regularly updated. Concerns raised regarding the system's accessibility and governance must be addressed prior to implementation.
The next steps, informed by this study, should include pilot testing of the QR code wristband system to identify potential issues and challenges, paving the way for broader applications that could benefit patients, their families and the wider healthcare system.