Introduction

Involving people that research affects can introduce knowledge and perspectives not necessarily held by researchers, enhancing quality and relevance of research [1]. Including people with lived experience, such as those with spinal cord injury (SCI), in research decision-making is considered best practice in health and disability studies and improves public confidence and understanding of research [2, 3]. The research relationship requires activity is done ‘with’ or ‘by’ persons with lived experience of a health issue rather than something that is done ‘to’, ‘about’ or ‘for’ them [4]. Consumer engagement in research is increasingly required by ethics committees and funders [5], and documenting how consumer engagement impacts research can facilitate better understanding of methods and processes, fostering good research practice [1, 6].

Consumer engagement can happen at each stage of the research cycle, starting with developing a research question through to dissemination of research findings [7]. The level of consumer participation throughout the research cycle ranges from informing through to consumer led activity (Fig. 1) [8]. It is recommended consumer engagement activities are conducted according to the Integrated Knowledge Translation (IKT) Guiding Principles [9]. IKT is a collaborative model that can be used to promote engagement between researchers and research users [10] leading to ‘relevant, useful and/or useable’ [9] research. The IKT Guiding Principles were co-developed to support SCI researchers and research users (including consumers) and comprise eight guiding principles: build relationships; share decision-making; facilitate communication; diversity in expertise and knowledge; allow tailored research to match project aims and context; meaningful partnerships; address ethical considerations; and, respect financial and practical constraints [9] (Table 1). Adopting IKT Guiding Principles during the research process and respecting the experiential knowledge people with lived experience bring to research fosters ‘meaningful SCI research partnerships’ [9] and quality research.

Fig. 1
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Levels and goals of consumer engagement (adapted from IAP2 Spectrum of Public Participation).

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Table 1 Consumer engagement guiding principles: how this research achieved meaningful outcomes*.
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People with SCI want to engage in research, with increasing advocacy for people with SCI to advise and collaborate on research activity [11,12,13,14,15]. Engaging people with SCI throughout the research cycle can facilitate SCI research purpose and efficiency, and promote translation of new knowledge, potentially enabling research outcomes to reach people with SCI more readily [9, 11,12,13]. People with SCI are now consulted to a greater extent on SCI research priorities, however, they are still less likely to be engaged in the research process itself [14]. Potential avenues for greater engagement include promoting positive attitudes towards the inclusion of people with experiential knowledge, building environments that foster relationships between researchers and people with SCI, and promoting the work of peers and champions of consumer engagement in SCI research as future role models [13].

Research context is important for consumer engagement planning and evaluation because it helps establish how consumer engagement can be achieved [1, 6]. The context of doctoral research creates unique challenges for consumer engagement, including a responsibility to complete an independent body of work, limited agency in the research topic, time, funds, and/or no prior consumer engagement experience [16,17,18,19]. Despite these challenges, consumer engagement in doctoral research can add value when planned early, with clear aims, and by being flexible to circumstances [16,17,18,19,20]. Consumer engagement in doctoral research can be facilitated by early access to experienced consumers, funding for remuneration, and consumer engagement training [16,17,18,19,20]. It can occur at the informing, consultative and involving levels, at different stages of the research cycle [17,18,19,20]. Methods of engagement include formal and informal, one-to-one and group activity via online and face to face meetings [16,17,18,19,20]. Postgraduate study is an entry point for people embarking on research, yet no identified studies have described the consumer engagement process in the context to doctoral SCI research.

The overall aim of this study was to evaluate the consumer engagement experience within the context of doctoral research. Specific aims were: to describe the consumer engagement activities, to assess how the consumer engagement activities met the IKT Guiding Principles, to describe the outcomes of the consumer engagement activities, and to identify enablers and challenges to consumer engagement. This paper is presented according to the Guidance for Reporting Involvement of Patients and the Public Short Form (GRIPP2-SF) [21] (see Supplementary Appendix 1). The findings of this evaluation, a consumer engagement experience within the context of doctoral research in the field of SCI, may also be applicable to other research projects and contexts.

Method

Research context

This full-time doctoral research aimed to investigate media portrayal of SCI. The doctoral candidate (the primary researcher) worked as a physiotherapist in SCI rehabilitation for 17 years prior to commencing the doctoral research and continued working part-time during the research. The primary researcher had no prior experience of consumer engagement in research, other than informal engagement with people with SCI in the clinical setting and formal engagement with the Burwood Academy Consultation Network, New Zealand [22] prior to commencing the doctoral research to help establish a relevant research topic. The primary researcher had two supervisors, one of whom had prior experience in consumer engagement. Two and a half years of the doctoral research was carried out during the Covid-19 pandemic and all communication was performed via a virtual platform (Zoom). The aim of consumer engagement was to embed experiential knowledge of SCI, not possessed by the primary researcher, to the overall doctoral thesis, in particular, two qualitative research studies (hereafter referred to as study one and study two respectively). Ethics approval was obtained to use the data produced from the Consumer Advisory Group activities in a published paper. This doctoral research centred SCI as the experiential knowledge of relevance [6], hence consumers were people with SCI [2]. Consumers and the primary researcher engaged in a bi-directional relationship, herein known as engagement [23].

Consumer Advisory Group

A Consumer Advisory Group was established comprising people with SCI (Table 2). Members were recruited through an advertisement calling for expressions of interest distributed by a local SCI peer agency. Acknowledging the diverse range of experiences of people living with SCI, all of which could influence perspectives and opinions, the expression of interest collected information about the number of years living with SCI, gender, and type and level of SCI. Potential members were also asked if they had prior consumer engagement experience, why they wanted to be involved, and what they could bring to the group. Four people applied and all joined the group. Eighteen months into the doctoral research another three people expressed interest after participating in study one and joined the group. Terms of reference for the Consumer Advisory Group were agreed upon at the first meeting. One group member resigned from the group after 24 months. All group members were full-time wheelchair users and acquired their SCI from traumatic aetiology.

Table 2 Consumer Advisory Group members.
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Consumer engagement activities

Consumer Advisory Group activities centred on four meetings, the timing of which was determined as the doctoral research progressed and corresponded to key points when formal advice was indicated. Each meeting was scheduled for 90 minutes, at a time convenient to members. If a member was unable to attend, the primary researcher offered a one-on-one meeting instead. The primary researcher emailed an agenda to the group one week prior to each meeting, highlighting key discussion points and any associated reading material. Meetings were audio recorded and transcribed verbatim, and the primary researcher also made handwritten notes. A summary of the meeting was emailed to members about one week later. The first meeting occurred six months after the doctoral research commenced and the final meeting was held six months prior to thesis submission. Between meetings, the group was emailed any follow-up tasks, updates on research progress, and information about outcomes such as publications and conference presentations, highlighting their contribution [9, 24, 25].

Consumer engagement evaluation

The consumer engagement evaluation adopted a reflective descriptive approach and was performed by the primary researcher. In a reflective analysis, the researcher adopts ‘self-understanding about the biases, values, and experiences that [they] bring to a qualitative research study’ [26]. Qualitative data sources included meeting transcripts, email correspondence, the primary researcher’s handwritten notes on consumer engagement activities diarised throughout the doctoral candidature, and a Consumer Advisory Group engagement survey. The survey comprised four open questions about what was valued, enablers and challenges to engagement, and feedback on the consumer engagement experience. It was completed by six group members anonymously after the final Consumer Advisory Group meeting. Following an iterative process, data from these sources were deductively coded according to: the steps of the research cycle [7], the levels of consumer participation [8], the eight IKT Guiding Principles [9], outcomes and effects of consumer engagement [21], and enablers and challenges to consumer engagement [21]. Descriptive analysis was performed on data coded as enablers and challenges and presented as themes. Following a constant comparison process [27] the remaining coded data were mapped according to a theoretical framework acknowledging the connection between the research cycle [7], levels of consumer participation [8] and IKT Guiding Principles [9] (Fig. 2) and presented descriptively in table form (Table 2, Table 3). This iterative process was cross-checked with Consumer Advisory Group members and research supervisors. Pseudonyms have been given to consumers throughout the reporting to maintain confidentiality.

Fig. 2
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Theoretical framework for relevant quality research.

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Table 3 Consumer engagement outcomes and effects at each stage of the research cycle.
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Results

Consumer engagement occurred at each stage of the research cycle and members participated at consultation, involving, and collaborative levels (Table 3). Research outcomes and effects were identified (Table 3). Analysis showed all IKT Guiding Principles research were met by the primary researcher (Table 1) [9]. To determine convergence with Consumer Advisory Group members, a sample of responses from the evaluation survey (Table 4) were mapped to each principle (Table 1).

Table 4 Consumer Advisory Group evaluation survey.
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Enablers of consumer engagement

Shared interest in the research topic

Members said that bringing lived experience to the research was important for them; they wished to introduce ‘the perspective from someone who has lived life in and out of a wheelchair’ (Tom), and ‘a lived experience of growing up while having an SCI’ (Craig). Members said they wanted to be involved because they had an interest in the topic and a desire to shape a better understanding of SCI and living with disability - ‘participating in the advisory group can help assist others with a better understanding of the impact [SCI] has on a person’ (David). Members described how they were motivated by the robust discussion of the research topic, and the opportunity to have their voices heard. For the primary researcher, group interaction supplemented formal academic supervision by providing a forum to explore new ideas directly related to the doctoral research as the research evolved.

Primary researcher’s rapport and understanding of the SCI community

Embarking on doctoral research as an experienced clinician meant the primary researcher was able to leverage established relationships and networks within the SCI community. This enabled the primary researcher to confidently propose the research topic, knowing it was relevant to the SCI community. The primary researcher’s familiarity and confidence communicating with people with SCI helped develop rapport with members, and from members’ perspectives, the primary researcher’s respect and curiosity for the research topic and lived experience facilitated this engagement.

Using a virtual platform to collaborate in dissemination of research findings

Due to the Covid-19 pandemic, an international SCI conference shifted to a virtual format, facilitating unanticipated collaboration with Consumer Advisory Group members in disseminating the research findings. Positive feedback from conference attendees identified the inclusion of consumers gave the presentation greater relevance and impact. Had the conference been face to face, members’ attendance and collaboration may not have been feasible. A virtual platform also facilitated the presentation of the doctoral research to a state-wide peer SCI group.

Supervisory support

The doctoral research supervisors encouraged consumer engagement from the outset and were supportive throughout. The supervisor with consumer engagement experience readily shared their experiences which helped shape group activity. Support and enquiry from the supervisors about the Consumer Advisory Group activities helped identify strategies for meaningful engagement as the research evolved and research findings emerged.

Funds

The primary researcher was able to apply for a student support grant to pay for member remuneration through their institution. Remuneration was calculated according to guidelines provided by Safer Care Victoria [28]. These funds were withdrawn from the primary researcher’s allocated funds dedicated to research related activity such as interview transcription, training courses and paying honoraria. While having access to funds for consumer remuneration was an enabler, the primary researcher was required to prioritise consumer remuneration over other research related costs such as attending conferences for presentations. The process revealed that systemic structures potentially hinder consumer engagement from being embedded practice in higher degree research, unless budgeted as part of a larger external research grant.

Challenges of consumer engagement

Complexity in harnessing varied perspectives

Engaging with people with SCI outside of a clinical environment enabled the primary researcher to listen openly. These interactions shaped a better understanding of the complexity of factors informing individual experiences. However, the interactions also revealed a complexity in collating perspectives when each perspective was unique. One member acknowledged the subjectivity of the research topic made the aim to reach group consensus challenging, however, overtime the experience enabled the primary researcher to recognise that reaching consensus need not be the goal. Despite these perceived challenges, the added richness to understanding lived experiences, together with heightened awareness to individual experiences and perspectives, was valued and appreciated by members and the primary researcher.

Time

A requirement to obtain ethics approval for consumer engagement inclusion meant Consumer Advisory Group activity commenced six months into the doctoral research. During this time, the primary researcher completed a newspaper content analysis of media portrayal of SCI without consulting with the Consumer Advisory Group, which would have been preferable. Instead, the primary researcher presented the findings from the content analysis at the first Consumer Advisory Group meeting. This provided a platform to initiate discussion on media portrayal of SCI and fuelled ideas for developing an interview schedule for study one. Advertising for Consumer Advisory Group members through one local SCI peer agency meant that only people with SCI associated with that organisation were invited to participate and others who might have been interested in taking part may not have been aware of the opportunity. Advertising through different channels would likely have attracted greater diversity, however three additional members were recruited following their participation in study one.

Using a virtual platform for meetings

Due to the Covid-19 pandemic, all communication was done online, which may have impacted members’ ability to get to know each other. This mostly transpired through nuances in members’ emails, at times misunderstood by fellow members and a challenge for the primary researcher to be ‘responsive to diverse [member] perspectives’ [24]. Relationship building activities such as social and research-directed gatherings [24] were not possible due to the Covid-19 pandemic. One member reported ‘while Zoom in some ways made for a less personal experience, it also seemed to provide a safety zone for people to talk honestly from their home/places of work’. The primary researcher followed up with members individually if something was misunderstood and/or to discuss a topic further. The one-to-one engagement enabled members to talk freely, which helped the primary researcher be more receptive to the varied member knowledge and expertise [9].

Consumers’ negative bias towards media

Multiple members helped ensure the research was informed from varied experiences, however, the primary researcher was mindful the group’s collective perspective of media portrayal of SCI weighed towards the negative. Members identified their understanding of SCI and perceptions living with disability shifted over time and influenced their perspectives on media portrayal of SCI. Ethical considerations meant members had completed any inpatient rehabilitation and were living in the community. This omitted potentially valuable acute SCI perspectives. While group discussions and research findings reflected existing disability and media literature, to address potential biases, members were encouraged to reflect on perceived views of the wider population of people with SCI.

Discussion

This reflective analysis offers an account of how consumer engagement added value to doctoral research, and the findings may also apply to other research projects. Consumer engagement helped inform the research topic, instil a lived experience perspective on two studies, and introduced experiential knowledge of SCI to the overall doctoral thesis. The primary researcher’s rapport with the SCI community and group members facilitated engagement, as did access to a source of funding that could be used for remuneration. Consumers’ perspectives provided unanticipated richness to the researcher experience, despite a perceived challenge to achieve consensus at times. Research activities empowering consumers to lead research was out of scope of doctoral research, however, building relationships and trust, and being responsive to opportunities, led to more in-depth engagement with dissemination of research findings.

Unlike previous reports [16,17,18,19,20], consumers in this doctoral research were not recruited through an existing consumer engagement body and required approval from a university ethics committee prior to commencement. Mutual interest and passion for the research topic brought a dynamic group together, facilitating rapport otherwise impeded by time and funds [9]. Capacity to draw members from an existing consumer engagement program may have enabled earlier engagement, however, may have prohibited the diversity of experiences and perspectives captured [25]. Ability to provide remuneration was an enabler, however the process revealed potential systemic issues whereby remuneration for consumer engagement may not be prioritised. With consumer engagement aiding relevancy and usefulness in research, and consumer engagement and renumeration considered best practice [2, 3], institutions and community organisations advocating consumer engagement in research could look at models that encourage and support doctoral researchers to provide remuneration.

A strength of a consumer-informed approach to this doctoral research comes from centring lived experience of SCI as the primary experiential knowledge of relevance [6], allowing a variety of voices at the centre of the health condition examined to be heard [25]. Despite familiarity with SCI and the impact on lived experiences, engaging with people with SCI outside of a clinical environment enabled the primary researcher to listen openly, refining and complementing prior knowledge [20]. These unanticipated interactions shaped a better understanding to the complexity of factors that inform individual experiences, highlighting a common experience of SCI and disability does not necessarily infer a common perspective [29]. A smaller group may have helped streamline engagement, however, not knowing the direction of the overall doctoral research, early identification of what and whose experiences to capture would not have been possible. Recognising the spectrum of experiences was better than not recognising them, and despite being a perceived challenge, the added richness to understanding lived experiences, together with awareness to individual differences [29], strengthened the research.

Relationships and valuing other’s opinion were fundamental in fostering meaningful activity during the research period. Working with consumers in this doctoral research started at consultative and involving levels of engagement, however, responding to emerging consumer skills and opportunities, together with built relationships and trust, participation evolved into collaboration with the dissemination of research findings, an integral step in the research cycle [7]. This level of engagement was unanticipated, a result of being flexible and responsive to change [6] and likely enabled research findings to be shared with a larger, non-academic audience, with potentially greater impact [1]. Relationships are key [14], and maintaining communication with members can potentially facilitate research opportunities and a pathway to more in-depth consumer engagement, such as co-investigator, in the future [20, 30].

Reflective analysis highlighted the connections between the research cycle [7], levels of consumer participation [8] and IKT Guiding Principles [9] and how they work in combination in context of the research (Fig. 2). Recognising these connections prospectively may assist consumer engagement planning and evaluation activities. The IKT Guiding Principles [9] were published in 2021, two years after the doctoral research and Consumer Advisory Group activities commenced. We recognise the limitations in a retrospective reflective analysis, however, members’ responses to the evaluation survey helped to address any perceived bias. It is recommended that IKT Guiding Principles are incorporated from the outset of future research activities. Promoting research knowledge and skills among consumers can facilitate consumer engagement [6]. While this was not the intent of the current evaluation, future research could investigate any difference to consumer advisory group member’s perceptions and knowledge of research after their participation. The decision to only include people with SCI as members of the Consumer Advisory Group was important to the context of this research. In other research studies, other potential researcher users could be involved.

Conclusion

This paper provides a detailed account of a consumer engagement experience in the context of doctoral research in SCI. It contributes to the literature by advocating for the inclusion of lived experience of SCI to promote relevant, useful and quality doctoral research, as well as providing a framework that could apply to other research projects. Findings suggest consumer engagement can be facilitated through mutual interest in the research topic. Funding support for doctoral researchers to remunerate consumers may help embed consumer engagement in practice. Opportunity for consumers to voice, and for the primary researcher to listen to, experiences and perspectives was challenging yet valued. Building and maintaining relationships, while responding to opportunities can facilitate consumer engagement.