Perspectives of consumer involvement in pre-clinical musculoskeletal research: a cross-sectional survey of consumers and community members

Abstract

Objectives

To examine how consumers are involved in pre-clinical musculoskeletal research and explore their perspectives on involvement.

Methods

A cross-sectional online survey was conducted to explore consumer involvement in pre-clinical musculoskeletal research and perspectives on involvement. Eligible participants were individuals with lived experience of musculoskeletal conditions or their carers, recruited via consumer networks in Australia and New Zealand. Quantitative and qualitative data were collected using structured and open-ended questions. Descriptive statistics and inductive content analysis were used to analyse responses.

Results

A total of 166 participants (n = 150 consumers, n = 16 carers) with lived experience of a musculoskeletal condition completed the survey. Forty percent of participants had prior involvement in pre-clinical research, primarily as study participants. Most consumers (77%) believed their involvement should be a requirement and identified clear expectations (96%), training (67%), reimbursement (61%) and buddying with researchers (60%) as essential supports. Almost one-third (32%) reported that the support required would vary depending on their role. Consumers rated their input as very important for identifying research priorities (64%) and ensuring research is clinically relevant (59%). Almost 40% did not agree that they lacked necessary training to contribute to pre-clinical research and showed little interest in applying for research funding (50%), recruiting participants (38%) or writing/reviewing publications (36%). Those with prior research experience reported greater confidence in their skills and their input’s relevance.

Conclusion

Consumers are willing and perceive that they can contribute meaningfully to pre-clinical research when appropriately supported. Aligning involvement opportunities with consumer interests and providing tailored support ensures impactful partnerships.

Key messages.

• There is a mismatch between activities consumers are typically invited to undertake and those they find most meaningful, highlighting priority setting and interpretation of findings as preferred roles.

• Consumers perceive themselves as capable, skilled contributors and outline practical supports (e.g. clear expectations, training, buddying and reimbursement) needed for meaningful engagement.

• This study provides evidence to inform tailored, role-specific strategies for consumer involvement in basic science research, moving beyond tokenistic approaches towards genuine partnership.

Introduction

Consumer and community involvement (CCI) in health and medical research is increasingly recognized as essential for improving research quality, relevance and impact. National and international funding bodies now routinely require evidence of meaningful CCI, placing growing emphasis on embedding public, patient and consumer perspectives through the research lifecycle [1]. Research partnerships with consumers as co-researchers are increasingly endorsed, and even mandated by some national research funders and policy makers (e.g. UK, Canada and Australia). In Australia, the National Health and Medical Research Council (NHMRC), in partnership with Consumers Health Forum of Australia, recently released a revised Statement on CCI in Health and Medical Research, reinforcing the expectation that consumers be involved in all research types and stages at all engagement levels from basic to applied science, and from priority setting through to dissemination [2].

CCI, referred to as patient and public involvement (PPI) in the UK, is advocated for across all stages of the research process [3]. CCI enhances the relevance, quality and appropriateness of research [4], ensuring that diverse perspectives are included in research that most efficiently meets the needs and expectations of those with lived experience of health conditions. Engaging consumers, including patients, carers and the public in clinical and implementation research has demonstrated benefits, including improved research relevance [5], enhanced recruitment and retention and reduced research waste [6]. Existing and emerging evidence supports the positive impact of CCI in clinical research [4], for ensuring acceptability of clinical care treatments and outcomes [7, 8], yet the evidence base for CCI in discovery-based, pre-clinical health and medical research is less well established [9].

Here we define pre-clinical research as research that includes basic, fundamental, biomedical, translational or lab-based (e.g. applied physiological, biomechanical and behavioural methods) designs that can include animals (in vivo), isolated cells/tissues (in vitro) or human participants [9]. Pre-clinical research typically does not include consumer focused priorities. Compared with clinical and implementation research, pre-clinical research may be perceived as inaccessible or obscure, presenting unique challenges to meaningful engagement [10, 11]. Researchers have divergent perspectives about whether, and how, consumers can contribute to pre-clinical research [12, 13]. Some perceive that consumers only have a marginal role to play [11], with the technical complexity and early-stage nature of the work seen as barriers to involvement. A contrasting view is that consumer perspectives can enrich pre-clinical research by informing research priorities, enhancing ethical considerations, and fostering public trust in science [14–16]. To guide the development of effective strategies for CCI in pre-clinical research, it is essential to explore consumer perceptions of their potential roles and contributions. As a significant proportion of health research funding supports pre-clinical research, it is important to understand how consumers are, can and want to be involved.

The aim of this study was to investigate whether, and how consumers are currently involved in pre-clinical musculoskeletal research and to explore consumer and community perspectives of their involvement.

Methods

Study design

This study used a cross-sectional design to explore CCI in pre-clinical musculoskeletal research. Both quantitative and qualitative data were collected to gather a comprehensive understanding of participants’ current involvement in pre-clinical musculoskeletal research and their perspectives on future involvement. Participants were recruited using a convenience sampling approach through the authors’ professional and personal networks. This method allowed for the inclusion of a diverse range of perspectives within the health consumer and patient community. The study was conducted in partnership with the Australia and New Zealand Musculoskeletal Clinical Trials Network (ANZMUSC) Basic Science Special Interest Group (SIG) and Consumer Advisory Group (CAG). The ANZMUSC Basic Science SIG is a network formed across Australia and New Zealand for people with an interest in investigator-initiated clinical trials for musculoskeletal conditions. The project was approved by the Institutional Human Research Ethics Committee (Approval number: HE002086) and participants provided informed written consent prior to completing the survey. The study is reported in line with the Consensus-Based Checklist for Reporting of Survey Studies (CROSS) checklist [17].

Participants

Individuals with lived experience of a musculoskeletal condition and their carers, located in Australia or New Zealand, were eligible to participate. Recognizing the value of reaching the consumer community via consumer organizations, an invitation to participate was distributed through the ANZMUSC CAG. Emails and social media posts were distributed to musculoskeletal consumer advocacy organisations (e.g. Arthritis Australia, PainAustralia and Musculoskeletal Health Australia) via representatives on the ANZMUSC CAG.

Data collection

Data were collected via a custom-built, online survey hosted via Qualtrics (Supplementary Data S1, available at Rheumatology Advances in Practice Online). The survey was designed in collaboration with members of the ANZMUSC CAG, drawing on existing frameworks for CCI [18]. The survey comprised five sections: (a) participant information and consent; (b) demographics; (c) current/previous involvement in pre-clinical research (e.g. activities involved in); (d) perceptions about involvement in pre-clinical research (e.g. importance of researcher engagement with groups, level of importance for consumer involvement in research activities and stages of research, barriers to involvement); and (e) perceptions about future involvement (e.g. level of interest to be involved in research activities, support required and additional thoughts). The survey primarily consisted of multiple-choice questions, Likert scale ratings and matrix-style questions to assess participants’ experiences and perceptions. Open-ended questions were included to gather additional qualitative insights.

The survey was piloted with the ANZMUSC CAG and the format and structure of the questions were revised with the consumer viewpoint and focus, to improve readability and ensure language was tailored to the consumer audience.

Data were collected between October 2023 and March 2025.

Data analysis

Responses were reviewed for consistency prior to analysis. When participants selected multiple responses for a single-answer question, the lowest score was retained if the responses were consecutive (e.g. if 1 and 2 were selected, 1 was retained). If the responses were not consecutive, the average of the two was calculated and rounded down to the nearest whole number (e.g. if 1 and 3 were selected, the final score was 2; if 1 and 5 were selected, the final score was 3).

Quantitative data were analysed using descriptive statistics, including frequencies, percentages and measures of central tendency, to summarize participants’ responses. Group differences between consumers with and without experience in pre-clinical research were explored using Chi-square, or Fisher’s exact tests corrected with Bonferroni for multiple comparisons. The significance level was set at α = 0.05.

For questions that included an open-text ‘other’ response option, these answers were reviewed by one author (M.H.R.) and either assigned to an existing category (if meaning of the response was similar to closed response options) or used to create a new category (where responses differed from closed response options). A second author (C.M.T.) checked the assigned and newly created categories, before frequencies of all categories, including newly created ones, were analysed.

Participant responses to two open-text questions were analysed using inductive qualitative content analysis [19]. Participants who answered ‘Yes’ to whether ‘the support they would require to be involved in pre-clinical research would vary depending on their role’ were asked to explain their response. At the end of the survey, all participants were also invited to share any additional thoughts or suggestions about CCI in pre-clinical research. Responses to each of these two questions were analysed separately using the same analytic approach. One author (M.H.R.) conducted initial open coding, assigning descriptive codes that closely reflected participants’ responses. Similar codes were grouped into broader descriptive categories, capturing key types of perspectives shared across participant responses. Frequencies were calculated for each category to indicate the relative prevalence of different viewpoints. A second author (C.M.T.) reviewed the categorization of responses to ensure clarity and consistency. Any discrepancies were resolved through discussion. This approach enabled a structured yet grounded understanding of participants’ views about CCI in pre-clinical research.

Results

A total of 166 participants completed the survey (n = 150 consumers, n = 16 carers). Participants were primarily women (129/157, 82%), with a mean age 56 (SD = 17, range 22–84), and were located primarily in Australia (98.7%). Additional participant demographics are provided in Table 1. Consumers and carers had lived experience of various conditions, with 61.2% reporting back pain, 52.2% osteoarthritis and 49.7% inflammatory arthritis, and many indicating lived experience of multiple (co-occurring) musculoskeletal or pain conditions (Supplementary Table S1, available at Rheumatology Advances in Practice Online).

Table 1.

Participant demographics (n = 166).

Characteristic
Lived experience of a musculoskeletal condition, n (%) (n = 166)
Consumer	150 (90.4)
Carer	16 (9.6)
Age in years, mean (SD), range (n = 155)	56 (17), 22-84
Gender identity, n (%) (n = 157)
Man	27 (17.2)
Woman	129 (82.2)
Non-binary	1 (0.6)
Country currently residing, n (%) (n = 156)
Australia	154 (98.7)
New Zealand	2 (1.3)
Employment status, n (%)a (n = 157)
Student	9 (5.1)
Retired	58 (32.8)
Unemployed	14 (7.9)
Employed	61 (34.5)
Unpaid work	6 (3.4)
Unable to work	29 (16.4)
Highest level of education, n (%) (n = 157)
Primary school	2 (1.3)
Secondary school	23 (14.6)
Tertiary education	122 (77.7)
PhD	6 (3.8)
Diploma	4 (2.5)

^aParticipants were able to select >1 response option.

Frequency of and nature of CCI in pre-clinical research

Of respondents, 39.6% (63/159) indicated that they had been involved as a consumer in pre-clinical research. These 63 respondents reported being involved in a range of activities, with the most common being reviewing participant information sheets (18/63; 28.6%), attending workshops (17/63; 27.0%) and attending meetings (16/63; 25.4%) (Supplementary Table S2, available at Rheumatology Advances in Practice Online). All 63 participants who had experience of being involved as a consumer in research also reported being research study participants.

Perceived importance of CCI and supports to facilitate involvement

Over three quarters of respondents believed that it should be a requirement for researchers to involve consumers in pre-clinical research (95/124; 76.6%), 18.6% were not sure (23/124) and only six participants (6/124; 4.8%) did not believe researchers should be required to involve consumers in pre-clinical research.

When asked about the overall value of their involvement in pre-clinical research, consumers rated it as extremely important for identifying priorities (90/140; 64.3%) and ensuring that research is clinically relevant (82/139; 59.0%) (Fig. 1). Participants also viewed their involvement as extremely important for preventing irrelevant research (74/138; 53.6%) and avoiding wasting funding on research (73/136; 53.7%). Additionally, half of the respondents (71/140; 50.7%) considered their involvement extremely important for translating research outcomes into clinical practice. In contrast, generating (59/139; 42.5%) and refining (52/139; 37.4%) research questions were seen as somewhat less important, with fewer respondents rating these activities as extremely important (Fig. 1).

Figure 1.

Consumer-rated importance of reasons for involving consumers in pre-clinical research. Stacked bar chart displaying the distribution of responses for each argument rated on a five-point Likert scale, from ‘extremely important’ (dark blue) to ‘not at all important’ (light green). Each bar represents a single item, with segments indicating the proportion of responses (%) at each importance level. Percentages are calculated relative to the total number of responses per item

The most frequently selected supports that participants required to enable their involvement in pre-clinical research were clear expectations about their role (e.g. schedules, deadlines) (117/122; 95.9%), followed by access to training (82/122; 67.2%), honoraria or reimbursement to cover expenses (74/122; 60.7%) and opportunities to buddy with a researcher (73/122; 59.8%) (Supplementary Table S3, available at Rheumatology Advances in Practice Online).

Out of 122 participants, the majority (83/122; 68.0%) indicated that their support needs would remain consistent regardless of their role as a consumer involved in the project (i.e. as a member of the research team vs attending a workshop). The remaining respondents (39/122; 32.0%) reported that the level of support required would vary depending on their role as a consumer involved in pre-clinical research, with content analysis identifying four key themes (Supplementary Table S4, available at Rheumatology Advances in Practice Online). Participant responses highlighted that the level or type of support required would vary depending on role-specific support needs (e.g. differences in training requirements), knowledge and expertise requirements (e.g. foundational knowledge of pre-clinical sciences), power and decision making, and compensation and recognition (e.g. honoraria would vary depending on involvement) (Supplementary Table S4, available at Rheumatology Advances in Practice Online).

Importance of involving different interest holders

Overall, most respondents rated engagement with listed interest holders as either ‘extremely’ or ‘very important’, though the strength of this endorsement varied. Individuals with lived experience (108/140; 77.1%), clinicians (74/139; 53.2%) and clinical researchers (71/139; 51.1%) were viewed as the most important groups to engage with, with a large majority selecting ‘extremely important’ and very few indicating low importance (e.g. ‘somewhat’ or ‘not at all’ important) (Fig. 2). Carers (60/139; 43.2%) and representatives of consumer/community organizations (52/138; 37.7%) were also highly valued, though responses were slightly more distributed across the top three categories of importance. Health services funders (45/138; 32.6%) and industry representatives (28/139; 20.1%) showed a broader spread of responses, with the lowest proportion of ‘extremely important’ and highest proportions of ‘moderately’, ‘somewhat’ and ‘not at all’ important (Fig. 2). Consumers also identified ‘Other’ interest holders that should be considered in pre-clinical research (n = 31), including allied health professionals (n = 4), family members (n = 3), general practitioners (n = 2) and government representatives (n = 2).

Figure 2.

Perceived importance of researcher engagement with various interest holder groups, as rated by consumers. Stacked bar chart displaying the distribution of responses for each interest holder group (e.g. patients, carers, clinicians) rated on a five-point Likert scale. Each bar represents a single interest holder group, with segments corresponding to the proportion of responses (%) for each level of importance. Response options range from ‘extremely important’ (dark blue) to ‘not at all important’ (light green), with percentages calculated relative to the total number of responses for each item

Perceived barriers to involvement

Overall, most barriers to CCI were not perceived by consumers to be impediments to their involvement in pre-clinical research (Fig. 3). Most respondents (82/135; 60.7%) strongly disagreed with the statement that they lacked the skills to contribute as consumers, almost half disagreed that their input would not be relevant or valuable (62/134; 46.7%) and 41% disagreed that they would not understand the research being conducted (56/135) (Fig. 3).

Figure 3.

Consumer level of agreement to potential barriers to their involvement in research. Stacked bar chart displaying the distribution of responses for each identified barrier rated on a five-point Likert scale, from ‘strongly disagree’ (dark red) to ‘strongly agree’ (light green). Each bar represents a single item, with segments indicating the proportion of responses (%) at each agreement level. Percentages are calculated relative to the total number of responses per item

Mixed views emerged regarding practical and structural barriers to involvement. Almost 40% of consumers (51/134) disagreed that they lacked the necessary training or support to participate, but 35% (47/134) were somewhat unsure about how to get involved in pre-clinical research (Fig. 3). Approximately a third of respondents (48/135; 35.6%) disagreed with the statement that they could not afford time off work to attend consumer involvement activities, while about a quarter (36/135; 26.7%) somewhat agreed (Fig. 3).

Consumer rated value versus interest in participating in various stages of research

When asked specifically about the importance of consumer involvement at various research stages and with various activities, consumers viewed their involvement as ‘very’ to ‘extremely important’ for setting research priorities (97/132; 73.48%) and making sense of the findings (68/132; 51.52%) (Fig. 4). This perceived importance was aligned with a similar level of personal interest to be involved in these research stages (75/127; 59.1% and 61/124; 49.2% respectively) (Fig. 4).

Figure 4.

Consumer-rated importance (top row of each pair) and personal interest (bottom row) in being involved across different stages of the research process. Responses were rated on a five-point Likert scale from ‘Not at all’ to ‘Extremely’. Colour intensity reflects the frequency (%) of total responses for each stage of research, with darker shades indicating higher frequency (the minimum value is 0% and the maximum value was 50.4%)

The research stages and activities that consumers perceived were less important for them to be involved in (i.e. highest proportion of ‘not at all important’ responses) were applying for research funding (32/131; 24.4%) and writing and reviewing publications (29/132; 22.0%). These stages and activities aligned with consumers’ interest, with the highest proportion of ‘not at all interested’ responses for applying for research funding (63/125; 50.4%), recruiting participants (47/124; 37.9%) and writing or reviewing publications (44/124; 35.5%) (Fig. 4). Planning (39/124; 31.5%) and designing research (37/125; 29.6%) also yielded little personal interest overall (Fig. 4).

Consumer perspectives about involvement in pre-clinical research

Content analysis of participant responses to the last survey question generated three overarching themes: The value of consumer involvement, Requirements for effective participation, and Barriers to engagement (Table 2). Many participants emphasized the unique value consumers bring to research, particularly through lived experience and perspectives distinct from those of clinicians and researchers. Highlighting this, one participant said ‘From a purely practical perspective, lived experience can surely only increase the validity of [pre-clinical] research…’ sharing that consumers are often ‘…more aware of how the specific disease affects their particular body…’ and that ‘…involving us in research will provide a far more nuanced perspective than can be achieved with purely theoretical knowledge’ (P83). Others highlighted practical requirements for effective involvement, including clear role descriptions, appropriate training, peer and institutional support, and genuine engagement from researchers. One participant shared that they were ‘…strongly in favour of it, but at the same time, consumers need to be consulted about how they can be involved, they need training and they need ongoing acceptance and support’ elaborating on the support required, they said ‘…financial assistance to cover time and costs is pretty essential. At the end of the day, research is carried out to help consumers, having the consumer voice at all stages has to be beneficial’ (P34). A smaller number of responses pointed to challenges such as uncertainty around how consumers can contribute to pre-clinical research and concerns about terminology, with one participant saying that involvement of consumers was ‘…good in theory but [I’m] not sure about practicalities’ (P71).

Table 2.

Themes and related codes generated from qualitative responses about consumer involvement in pre-clinical research.

Theme	Code	n (%)
Value of consumer involvement	Because consumers have different perspectives from clinicians/researchers	7 (14.3)
	Consumer involvement is invaluable; lived experience of condition	5 (10.2)
	For ensuring all perspectives are included in research	5 (10.2)
	Consumer involvement is invaluable	4 (8.2)
	Consumer involvement can prevent research waste and reduce research costs	3 (6.1)
	May facilitate communication and engagement of the public in research	1 (2.0)
	Consumer voice is important, particularly for plain language use	1 (2.0)
Requirements for effective involvement	Consumers need clear role descriptions and expectations from the researchers	5 (10.2)
	Consumers setting the requirements for their own involvement	2 (4.1)
	Peer support	2 (4.1)
	Institutional and researcher support is essential	2 (4.1)
	Training to ensure advocacy includes consumer perspectives other than their own	2 (4.1)
	Consumers need appropriate training	2 (4.1)
	Consumer involvement needs to be planned	1 (2.0)
	Researchers need to genuinely involve consumers	1 (2.0)
	Appropriate remuneration	1 (2.0)
Barriers and challenges	Consumers are not sure about how they can be involved in pre-clinical research	3 (6.1)
	The term ‘consumer’ is problematic	1 (2.0)

Differences in views between consumers with and without experience in pre-clinical research

Consumers with and without experience of being involved answered similarly across questions related to the importance of engagement of certain groups of people, involvement in research stages and to what end their involvement would be important. In contrast, consumers with and without experience had somewhat different views when it came to the barriers to participate in pre-clinical research. Those with prior experience as consumers in research rated their skill (corrected P = 0.038) and the relevance of their input (corrected P = 0.036) as higher compared with those with no prior experience as consumers.

Discussion

This study provides insight into consumer perspectives about involvement in pre-clinical musculoskeletal research, an area where engagement has traditionally been limited. Our findings challenge assumptions about consumer capacity and interest in contributing to early-stage research and highlight actionable strategies to support meaningful involvement.

Consumers in our study expressed confidence in their ability to contribute to pre-clinical research with appropriate organizational support. The majority disagreed with statements suggesting they lacked the necessary skill, understanding or capacity to engage in pre-clinical research. Importantly, consumers believed their input would be relevant and of value, directly challenging commonly cited reasons for lack of consumer engagement in pre-clinical research [10, 11]. This aligns with existing research that highlights the value in bringing consumer perspectives to pre-clinical research, through coordinated, organization-wide approaches [20].

A key finding was the mismatch between the activities consumers are typically invited to undertake and those they find most meaningful. Importantly, participants often distinguished between recognizing the importance of consumer involvement in an activity and personally wanting to contribute to that activity themselves. Although consumers expressed enthusiasm for contributing to setting research priorities and making sense of findings, they reported lower interest in applying for funding or recruiting participants, tasks often emphasized in current approaches to consumer involvement. Nearly half of participants indicated no interest in grant applications, and over a third expressed no interest in recruitment despite these being activities consumers commonly contribute to [20]. This disconnect risks disengagement and highlights the importance of aligning involvement opportunities with consumer interests and motivations [21]. These findings suggest that support for consumer involvement should not be interpreted as a desire for all consumers to participate in every stage of the research process. Rather, meaningful involvement requires flexible opportunities that allow consumers to contribute in ways that align with their interests, expertise and capacity. Early, genuine and flexible involvement in study design may foster positive consumer involvement experiences and stronger and more sustained partnerships [20].

An issue for consideration is to which aspects of research consumers with non-expert training can meaningfully contribute. It is plausible that consumers can provide valuable insights into setting research priorities, particularly in identifying the symptoms and outcomes that matter most to those with lived experience, and in interpreting findings in ways that enhance relevance and impact. With appropriate support and education about study-specific methods, consumers may also contribute to aspects of study design, especially in translational or human-facing fundamental research, where their perspectives can help ensure ethical and practical feasibility. Consumers have demonstrated their skills and expertise in navigating the healthcare system, and identifying gaps therein. These skills can directly impact translation of research to practice and systems change (e.g. developing models of care, treatment pathways and facilitating patient adherence). In contrast, it may be less feasible for consumers to assess the scientific merit of highly technical or molecular-level research questions, where the relevance to lived experience is less direct. Nonetheless, consumers in our study strongly advocated for involvement to help prevent irrelevant research and reduce waste, an argument echoed in broader policy frameworks that emphasize the importance of aligning research with consumer and community needs [2]. Rather than interpreting this as limiting CCI to priority setting alone, these findings highlight the value of involving consumers early in the research process, even in pre-clinical contexts, to build capacity, foster ongoing partnership and support translational momentum [22]. This suggests that although CCI may be most impactful at the level of setting strategic research directions, bringing consumers along the research pathway from its early stages can create informed champions of the work, even if their direct role in shaping technical aspects of individual pre-clinical research projects remains context dependent.

Despite this willingness and capability, consumers identified that meaningful involvement requires structural and practical support. Clear role expectations, access to training, buddying with researchers and honoraria or reimbursement to cover expenses were consistently highlighted as essential for supporting CCI in pre-clinical research. Organizational support and adequate resourcing [23] have been identified as priorities for enabling consumer engagement in pre-clinical research [20]. Individual support needs varied depending on whether consumers were involved in advisory, administrative or embedded research roles, highlighting the need for flexible and tailored approaches [23]. This is consistent with proposed models that classify consumer contribution to research into three tiers based on varying levels of time commitment, required training, scientific understanding and managerial skills [23].

In pre-clinical research, the content and purpose of training would require careful consideration. It is unlikely that the intention should be to train consumers as ‘scientists’, nor that all consumers may necessarily need or want training [24]. Rather, any training offered could be tailored to the nature of their contribution and the type of research involved. For example, consumers involved in priority setting may value education on research pathways, disease mechanisms and approaches to identifying meaningful outcomes. Those involved in interpreting findings may value support to understand study-specific methods or opportunities to observe pre-clinical research in order to demystify the scientific process, foster more confident engagement and address barriers or concerns about differences in knowledge and research experience [16]. Training may also include guidance on approaches to priority setting and communication skills for advocacy and collaboration [21]. It is also plausible that mentoring by other consumers with relevant involvement experience would deliver similar capacity building to formal CCI training. There is a growing consensus that consumer education should be flexible, role-specific and designed to build mutual understanding between researchers and consumers, rather than replicate formal scientific training [23].

Interestingly, some participants in this study questioned the term ‘consumer’, suggesting that it may not adequately reflect the collaborative, skilled and experience-informed nature of their contributions. This highlights how terminology is not simply descriptive, but may shape perceptions and expectations about contributors’ roles, expertise and influence within research partnerships. A potential alternative worth considering is ‘interest holder with lived experience or expertise’, which could be extended consistently across groups, for example, ‘interest holder with clinical experience’ to acknowledge the distinct forms of knowledge each brings while positioning different forms of expertise as equally valuable. Such language may help reduce traditional hierarchies between interest holders (both researchers and consumers) by reinforcing that lived experience represents a complementary form of expertise rather than a lesser one. In addition to terminology, researcher attitudes and institutional culture also play a critical role in either enabling or limiting the extent and quality of CCI [20]. Where consumers are perceived as lacking understanding, or where funding and institutional support are absent, opportunities for meaningful engagement are often constrained [25]. Together, terminology, researcher attitudes and organizational culture can reinforce, or help address, existing power imbalances within research partnerships. Addressing these cultural and structural barriers, including assumptions about capability and the absence of enabling infrastructure, will be crucial to advancing authentic and impactful partnerships in pre-clinical research [20].

This study offers valuable insights into consumer perspectives about involvement in pre-clinical research; however, some limitations should be acknowledged. The study was based on a cross-sectional survey using a convenience sample, with participants from Australia and New Zealand self-selecting to complete the survey. As such, findings may be subject to response bias, reflecting participants’ prior experiences, beliefs or assumptions shaped by media or peer discourse, rather than engagement with specific consumer involvement activities. The survey was framed around existing research structures, asking consumers to identify where they fit within current processes (i.e. providing response options, with optional open text) rather than predominantly qualitative analysis of open-text questions. Although this may have constrained the depth of their responses, the survey was conceptualized in partnership with ANZMUSC CAG members who had experience contributing to pre-clinical research and was reviewed and refined in collaboration with members of the ANZMUSC Basic Science SIG. This involvement represents a strength of the study, supporting relevance and credibility and reflecting a commitment to partnership even within the constraints of a structured survey design. Despite this, qualitative findings should be interpreted in light of the brief open-text responses, which did not allow for probing, clarification or iterative exploration of emerging ideas that would have been possible with alternative methods for qualitative data collection (e.g. interviews). Future research could build on these findings using in-depth qualitative approaches to further explore how consumers understand basic science research, how they make decisions about involvement and what forms of support enable meaningful and equitable participation.

Although this study was conducted in Australia and New Zealand, the findings are likely to have relevance beyond these contexts. Internationally, consumer, community, PPI is increasingly positioned as an expectation of high-quality health and medical research, including early-stage and non-clinical research (e.g. PPI for the UK National Institute for Health and Care Research and the Canadian Institute for Health Research). The practical supports identified in this study align with broader international principles of meaningful involvement; however, transferability of our findings should be considered in relation to local funding requirements, research governance structures, terminology and maturity of consumer involvement in basic science research within each setting.

This study highlights that consumers are both willing and perceive themselves to be capable of contributing meaningfully to pre-clinical research when provided with recognition for their contribution and supported by appropriate structures and resources. Findings challenge assumptions about consumer capacity and underscore the importance of aligning involvement opportunities with consumer interests, particularly in priority setting and interpretation of findings. Tailored training, role clarity and organizational support are essential to fostering genuine partnerships. Addressing both cultural and structural barriers will be critical to advancing inclusive and impactful consumer engagement in pre-clinical research.

Supplementary data

Supplementary data are available at Rheumatology Advances in Practice Online.

Data availability

The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.

Author contributions

Megan H. Ross, Bec Jenkinson, Emmah Doig, Christopher B. Little, Annette (Annie) McPherson, Christine Beanland and Paul Hodges conceived and designed the study. Megan H. Ross conducted the investigation and managed project administration. Megan H. Ross and Camille Maeva Thomas performed the formal analysis, with visualization led by Camille Maeva Thomas. Paul Hodges secured resources and funding. Megan H. Ross and Camille Maeva Thomas drafted the manuscript, and all authors contributed to reviewing and editing the manuscript. All authors approved the final version of the manuscript.

Funding

P.H. is supported by a Fellowship from the National Health and Medical Research Council (NHMRC: 1194937) of Australia. Funding was provided by a Centre of Research Excellence grant from the National Health and Medical Research Council (NHMRC: 2015615).

Disclosure statement: The authors have declared no conflict of interest.