Public involvement in paramedicine research: A call for uplift

Some years ago, I found myself as a delegate at a paramedicine conference listening to research presentations and soaking up the most recent findings from a broad array of projects spanning the continuum of research methodology. There were many wonderful pieces presented, spanning the domains of clinical care, education and management, positioned within quantitative and qualitative realms. Two presentations explored paramedics’ perceptions and experiences, generating useful insights into the care we provide and how we as paramedics feel about what we do; the results indicated we saw value in what we do and were proud of the way we do it. Several other quantitative studies demonstrated effectiveness of various interventions paramedics perform. These were good pieces of work, and I perceived them to be received positively by those around me. However, it was one presentation that struck me in terms of its impact on me and through observation, on others in the room. The study used qualitative methods to report women's experiences of unplanned out of hospital birth in paramedic care.^1,2 Through a feminist lens, a thematic analysis had been conducted using data from women's personal narratives describing their experiences. The study placed women at the centre of the research, establishing a voice for these consumers of paramedic care, and the results were powerful. Positive and negative experiences were presented in what was truly a balanced presentation, but it was the negative that really struck a chord amongst those in the room; I perceived an almost visceral response from delegates to these confronting results. Under a broad theme of ‘consent’, sub-themes of ‘powerlessness’ and ‘betrayal of trust’ were presented, creating a palpable tension in the room and a sense of what I would describe as indignation arising within the questions and comments from delegates that followed. The narratives of these consumers of paramedic care were powerful, their collective voice was loud, and at times it was uncomfortable to digest. That single presentation was a watershed moment for me, crystalising the importance of giving the public a voice through research, of viewing our care through their lens, and illuminating their sense of value and preference to the same brightness as our own.

Over the period since that experience, the public’s needs, values and preferences have been increasingly recognised as central to healthcare decision-making and delivery, and their value as contributors to the research process crystallised; but, has that recognition become tangible in paramedicine research? Have we embraced the public lens in terms of first, giving prominence to their experience in the research we conduct, and second, involving them in the research cycle and the governance of it? Recent evidence suggests not, as for example, patient experience or involvement did not appear in the final research agendas derived from national consensus projects in Australia, ³ Canada, ⁴ or the Netherlands. ⁵

This editorial advocates for increased public involvement in paramedicine research. The nature of public involvement and its known value will be highlighted, a scan of paramedicine research giving voice to the public presented, and opportunities for public involvement proposed.

Defining ‘consumer’, ‘patient’, ‘public’ and ‘involvement’

Discourse regarding patient involvement is characterised by varying nomenclature which may give rise to confusion, with ‘patient’, ‘consumer’ and ‘public’ often used interchangeably. For clarity, this editorial adopts the National Health and Medical Research Council (NHMRC) definition of ‘consumer’, ‘community member’ and ‘public’ as described in that organisation's ‘Statement on Consumer and Community involvement in Health and Medical Research’. ⁶ A community member is ‘a member of a community, that being group of people sharing a common interest (e.g., cultural, social, political, health, economic interests) but not necessarily a particular geographic association’. Consumers are ‘patients and potential patients, carers and people who use health care services’. Collectively, community members and consumers constitute the ‘public’, a useful overarching label that serves as a more encompassing term that recognises those around or connected to consumers, and whose voices should also be heard.

Whilst the experience described earlier in this editorial related to the public as ‘research participants’ and being the focus of the research, ‘involvement’ in this context has several layers and might best be viewed as an overarching term that includes ‘consultation’, ‘participation’, ‘engagement’, ‘partnership’, ‘co-production’ and ‘collaboration’ ⁷ ; each of these can be operationalised at an individual, service or institutional level. ⁸ That is, the public can be present as the focus of the research with the goal of reporting, describing and/or interpreting the public's experience, and or in contributing to the research process itself, the governance of it and subsequent decision-making. The term ‘public and patient involvement’ is increasingly used in the health and medical research space, for example, by the National Institute for Health and Care Research (NIHR) in the United Kingdom (UK). ⁹ ‘Public involvement’ will be used hereafter in this piece as the generic term.

The benefits of public involvement in research

The benefits of public involvement in health and medical research and the decision-making arising from it are well known.

Regarding involving the public as participants in research with the aim of giving voice to their experience, a systematic review of 55 studies by Doyle et al. reported positive correlation between patient experience, patient safety and clinical effectiveness for a wide range of disease areas, settings, outcome measures and study designs. ¹⁰ In the most simplest terms, the public voice helps healthcare providers, guideline developers and policy makers understand the values, preferences, needs and concerns of the public they provide services to, in doing placing the public at the centre of the healthcare experience. ⁸ This is essential as the values, preferences, needs and concerns of the public may frequently be at odds with those of the healthcare provider and/or policy maker. This understanding is vital in point-of-care shared decision-making, but equally so in care guideline development and evidence-production where public voice strengthens and enrichens these processes.

Regarding involving the public in research design and governance as collaborators, partners and co-designers, Nass et al., in their 2012 report for the Patient-Centred Outcomes Research Institute elegantly summarised: ‘Engaging patients in health care research makes (investments in) research more accountable and transparent, provides new insights that could lead to innovative discoveries and ensures that research is relevant to patients’ concerns. The international experience with engaging citizens and patients in research has shown that involving them early in the design of studies, ideally as early as at the planning stage, leads to better results’. ¹¹

The current presence of public involvement in paramedicine research

An informal scan of the extant literature suggests the involvement of the public in paramedicine research is emergent, but still profoundly underrepresented. In an early example from 2005, Hartley et al. used narrative enquiry and thematic analysis were to examine the cultural and religious needs of consumers in relation to paramedic care. ¹² In a UK context, Halter et al. used quantitative survey methods on 2007 to give voice to the experiences and satisfaction of 63 consumers who had received care from what was at that time a new paramedic model involving Emergency Care Practitioners. ¹³ Occasional works have emerged sporadically since, for example, those giving voice to the experiences of women experiencing out of hospital birthing, ² frequent users of ambulance services, ¹⁴ those not transported following paramedic assessment and care, ¹⁵ those receiving paramedic care for chronic pain over the following decade, ¹⁶ those to whom palliative care was provided by paramedics,^17,18 and women with chest pain receiving paramedic-performed 12-lead ECGs. ¹⁹ Some areas have received specific focus, though. In a 2023 systematic review by Whitely et al. investigating experiences of public and paramedics in the context of acute pain management, eight of the 24 included studies reported consumer and/or family member experience. ²⁰ A scoping review by King et al. in 2021 exploring public experience when non-conveyed following paramedic care identified ten such studies. ²¹

Notable within this scan was the prevalence of qualitative methodologies to report the public experience, and infrequency of quantitative research using patient-reported measures (PRMs). Patient-reported measures are distinct types of metrics to capture patients’ perspectives of their care and are integral to building a patient-centred system of structuring, monitoring, delivering and financing health care. ²² There are two branches of PRMs: patient-reported outcome measures, directly reported by the patient without interpretation by a clinician or anyone else and pertains to the patient's health, quality of life or functional status associated with health care or treatment; and patient-reported experience measures via which patients describe, rather than simply evaluate, what happened during their encounters with health services. ²²

Regarding research investigating paramedicine care in the context of First Nations peoples, the public voice is particularly quiet. Recent Canadian work by Taplin et al. explored First Nations people's perspectives on transitions of care involving paramedics, using a participatory research design centred around public involvement in design, recruitment, conduct and review of data. ²³ In Aotearoa New Zealand, using similar methods, Penney et al. explored the experiences of Māori who had received care from paramedics for chest pain. ²⁴ The research actively involved Māori public in design, conduct and interpretation of data.

Regarding inclusion of public voice in the research process, for example via participatory research designs, the present status is more difficult to describe. ²⁵ The afore mentioned studies by Taplin ²³ and Penney ²⁴ constitute research in which public involvement was clearly embedded within the research process, however, this appears to be uncommon or at the very least, not routinely reported if it were present, in the other examples presented herein.

Increasing public involvement in paramedicine research

There are several ways by which we might work to increase the presence of the public in paramedicine research.

First, we should seek to give amplify public voice by more routinely embedding projects that explore and report public experience within our broader suites of research. There is no shortage of research reporting paramedic experiences, perceptions and attitudes; these are of course important and offer meaningful insights into our profession regarding the way we what we do and how we behave. But we may be approaching a point in time in the maturation of our profession where it might be timely to de-centre ourselves within the experiential questions we ask, instead positioning the public's experiences, and therefore their values and preferences, more prominently. When conceiving a suite of work, perhaps we might routinely pose this simple question to our teams: ‘which of our research questions captures the public's experience, values and preferences for this suite of research?’

Second, we should seek to routinely involve the public in the research process itself across the phases of the research cycle and consider participatory research paradigms more often. ²⁵ Most national research funding bodies have statements advocating for public involvement in research, and in the context of research involving First Nations peoples, demand evidence of it. ⁶ We should seek to involve the public in the phases of the research cycle where feasible to do so. This might be facilitated by becoming more familiar with, and more regularly connecting to, the public involvement conceptual frameworks and instructional toolkits from key research bodies such as NHMRC in Australia, ⁶ NIHR in the UK, ⁹ or Canadian Institutes of Health Research in Canada. ²⁶ It might be argued that such public involvement as advocated by national research bodies is only necessary when conceiving and designing research for which grant funding from those national bodies may be sought. But whilst acknowledging that public involvement in research is not without barriers and challenges, and that it will not always be a necessary or relevant component, ²⁷ we should at the very least look consider an opportunity for public involvement; not because we are told to or have to, but because we understand its significance and therefore desire to.

Third, we should also seek to ensure public involvement in research committees and advisory groups within our professional Colleges and Associations, allowing public values and preferences regarding the paramedicine care they receive to be positioned prominently in our research governance discussions and decisions. Taking this another step further, we could move towards making demonstration of public involvement in the research process a requirement in paramedicine research grant application criteria for types of study designs and focus areas.

Fourth, we should look to transparently declare whether there was or was not public involvement in a research project when we report out research. We could do so when or if a journal mandates it in its submission guidelines (as some are beginning to do), ²⁸ or we could embrace the importance of such a declaration of our own accord because it represents best practice. Reporting guidelines such as those available via the EQUATOR network are yet to include items relating to reporting of public involvement for various methodologies, but this is likely to change in the next generation of those guidance sources.

Finally, within the context of journal publishing, novel initiatives that promote a louder public voice in research are emerging and should be explored. For example, some journals are exploring participation of the public in peer-review, and as editorial board members, ensuring stronger involvement in research reporting and dissemination and adding a new dimension to the manuscript development and research translation.

Conclusion

Paramedicine advocates for the pursuit of uplift regarding public involvement in paramedicine research, with the aspirational goal of centring the public more prominently in what we research and how we research it. Certainly, barriers and challenges exist, but enablers are present too. As researchers we must look to increase our research literacy in this space, becoming more familiar with national standards in the health and medical research field, and empowering ourselves by filling our individual research toolkits with recognised strategies such as those referred to herein. Paramedicine seeks to create a discourse in which public involvement in our profession's research is debated and discussed, and promote a research culture in which we embrace public involvement not simply because policies tell us to, but because we recognise its value and therefore desire to.