Perspectives of cancer consumer representatives on their involvement in healthcare service improvement: a qualitative study

Abstract

Background

Consumer involvement in healthcare service organisation and policy development is recognised globally as a vital strategy in improving the quality and patient-centredness of care. There are significant gaps in knowledge about consumer involvement in practice, including consumers’ engagement in the process of enhancing cancer services. This study aimed to explore consumers’ perspectives on their involvement in cancer service improvement.

Methods

Cancer consumer representatives were recruited through Victorian Integrated Cancer Services, Australia. Eligible consumers were, or had been, a member of a health service improvement-related committee or project and attended at least one meeting with health professionals. Semi-structured qualitative interviews were conducted online and transcribed verbatim. Data were analysed using inductive thematic analysis.

Results

Six experienced consumer representatives were interviewed. Perspectives on their involvement in improving cancer services were categorised into three major topics. The first addressed personal aspects of involvement, in which participants described personal motivations (e.g., having lived experience of cancer themselves or in their family), challenges encountered in committee involvement, experiences of received support in their role as a consumer representative, concerns about narrow representation, and their evolving identity as a consumer representative. The second discussed practical contributions made by consumer representatives to improve systems and services. Participants detailed their active engagement with committees and consumer-led projects, contributing both their cancer experiences and general or professional skills. The third topic focused on directions for improving consumer involvement in the health system. Suggestions highlighted widening consumer representation to include often marginalised voices to inform decision-making at local committee and health system levels.

Conclusions

This study enhances the real-world understanding of the role that consumer representatives play in improving cancer health services. The strategies suggested in our research provide the opportunity to enhance consumer involvement and pave the way for more effective cancer service planning and implementation across diverse healthcare settings.

Supplementary Information

The online version contains supplementary material available at 10.1186/s12913-024-11669-7.

Background

“The people have the right and duty to participate individually and collectively in the planning and implementation of their health care”. Article IV of the World Health Organisation Declaration of Alma-Ata, 1978 [1].

A ‘consumer representative’ is a person who “provides a consumer perspective, contributes consumer experiences, advocates for the interests of current and potential health service users” [2]. Internationally, health policy consistently requires health care providers to consult consumers on many aspects of their activities [3]. Australian health policy, at both state and federal levels, reflects this approach [4].

There is extensive literature on the subject. A scoping review of 59 systematic reviews examining different aspects of consumer and community engagement found a range of concepts and terminology, suggesting the need for some standardisation of these [5]. A parallel analysis of 90 systematic reviews examining strategies for enhancing consumer and community engagement proposed an eight step process model for enhancing engagement [6].

Cancer Australia was established by the Federal Government in 2006 as Australia’s lead cancer control agency [7]. In 2011, Cancer Australia published the National Framework for Consumer Involvement in Cancer Control, in partnership with advocacy group Cancer Voices Australia, to help organisations to meaningfully engage with consumers [8]. In 2011, a ‘Partnering with Consumers’ standard was included as part of the first edition of the Australian National Safety and Quality Health Service Standards (NSQHSSs) [9] against which healthcare organisations are accredited. The introduction of the Consumer Standard led to debate about appropriate health system activities to achieve compliance. A nationwide qualitative study of healthcare stakeholders conducted in 2012 identified multiple mechanisms for using accreditation to increase and enhance consumer engagement [10]. The Australian Commission on Safety and Quality in Health Care (ACSQHC) surveyed accredited healthcare organisations and provided additional guidance in 2014 [11], and continues to provide updated web-based resources [12]. Community organisations such as the Consumer Health Forum of Australia also provide guidance on the roles that consumers can play [13] as do other Government agencies like Cancer Australia, which offers a web-based consumer involvement toolkit [14].

There are many overlapping perspectives on the role of the healthcare consumer, from informed research subject or care recipient on the one hand, through to active citizen with legal and democratic rights, on the other [15]. The Consumer Standard seeks to incorporate aspects of both dimensions, facilitating consumer-centred care by including representatives in the review, design and implementation of health services [16]. Consumer representatives can be appointed to advisory roles through various mechanisms, from personal approaches to general calls for volunteers through to seeking formal representation from an active consumer organisation.

Accreditation results for the four years 2013–2016 show that the majority of organisations have been meeting more of the NSQHSS consumer standards over time [16]. By 2016, virtually all organisations were found to be including consumers in their quality improvement processes while the lowest levels of compliance was with provision of orientation for consumer representatives and with participation in the review of patient feedback data, both of which had a little over 75% compliance [16].

While accreditation results suggest compliance with basic actions to include consumer representatives in organisational governance and service quality improvement, including in cancer services, little is known about the experiences of these representatives. This qualitative interview study aims to explore the experience of consumer representatives active in cancer service improvement networks in Victoria, Australia. The study seeks to address the question: “What are the perspectives of cancer consumer representatives on their involvement in healthcare service improvement?” A novel aspect of this research is that the interviews were designed and conducted by a consumer representative, supported by the academic team.

Methods

The study was part of a postgraduate research project which sought to examine how cancer consumer representatives interpret their experiences of working together with healthcare providers in healthcare governance to improve care quality. The study was framed by interpretivist/constructivist concepts relating to the way that individuals create their own meanings and interpretations of the world [17]. In line with methodological theory regarding information power and data adequacy in qualitative research [18–20], in-depth interviews were conducted with six experienced consumer representatives involved in different segments of the Australian healthcare system. This approach aligned with our goal of investigating the intricacies of the broader phenomenon of consumer representation in healthcare. To ensure receptiveness to the sensitivities of each participant, interviews were conducted by a researcher with experience as a cancer consumer representative. Inductive thematic transcript analysis to point of saturation [21] captured the insights and nuances of experience in the data. The Consolidated Criteria for Reporting Qualitative Research (COREQ) guided the reporting of the findings of this study [22].

Research team and reflexivity

The postgraduate research student (JM) who conducted interviews had considerable experience as a consumer representative with one of the metropolitan Integrated Cancer Services (ICSs); that ICS was thus excluded from participation due to potential conflicts of interest and likely conscious or unconscious bias. JM’s background had a substantial influence on the formulation of interview questions and the direction of the interview discussions, allowing for exploration of the nuances and complexities of consumer advocacy. JM’s impact on data collection was also framed by a constant comparative approach [23] in which JM analysed and coded initial interviews to shape the content and direction of subsequent interviews and to guide inquiry into emerging topics of interest.

Unfortunately, the research candidate was obliged to withdraw for personal reasons after completion of the interviews. Data analysis was conducted by a graduate research fellow with a background in cancer nursing and experience conducting and analysing qualitative research relating to patient experience (DL), supported by a senior colleague (KL) and with guidance from the candidate (JM) and her former supervisors (YZ and GA).

Although all members of the analysis team were involved in qualitative health services research focusing on patient experience, none had experience as a consumer representative. To address this divergence from the origins of the study, the team iteratively checked back with the transcripts to ensure that nuance was not lost during the final stages of analysis and in manuscript drafting. Additionally, JM contributed to the analysis and interpretation by reviewing emerging themes and by participating in discussions. In contextualising the findings, the team involved another senior colleague (JB) with experience in the introductory phase of consumer representation accreditation and ongoing industry involvement in consumer representation [5, 6, 10].

Setting and participants

Victoria is the second most populous state in Australia, with about 6.8 million inhabitants. While Victorian public hospitals have their own Boards with members appointed by Government, their cancer services coordinate through ICS networks within geographically contiguous areas for service improvement purposes [24]. Victoria has nine ICSs: a statewide paediatric network, three metropolitan and five regional ICSs. The goal of an ICS is to bring together hospitals, healthcare providers and consumers to collaborate on cancer service delivery and improvement projects. Governance is at an individual ICS level, with each ICS having a Governance Committee, a manager and five to eight staff. Operations can vary to meet local needs, with each ICS accountable to the Victorian Department of Health for implementing state cancer care priorities. In each ICS one staff member is responsible for consumer engagement, facilitating the involvement of consumer representatives in service improvement activities.

Participants were eligible for inclusion if: (1) they were an ICS cancer consumer representative, and (2) had experience of attending at least one meeting related to a committee or project that focused on cancer service improvement at which health professionals were also present. It should be noted that ethics-approval processes required that consumers could only be approached through the ICSs, effectively restricting eligibility to consumers working with ICSs that agreed to distribute study information.

Procedures

Ethics

Ethical approval was obtained from the Macquarie University Human Research Ethics Committee (Ref. No. 52021985830344) and Austin Health Human Research Ethics Committee (Ref. No. LNR 77466/2021). Austin Health Human Research Ethics Committee is accredited to review multi-site research projects in Victoria, and accordingly was able to grant ethical approval for research conducted across all Victorian ICSs.

Recruitment

Early in 2021, one of the research team (JM) met with one of the State Coordinators of the Victorian ICSs and provided them with information about the study. The State Coordinator presented information about the project to the May 2021 ICS Managers’ meeting, a monthly meeting of the nine ICS managers. The managers gave support to the project. The researcher contacted the managers of the adult ICSs individually, requesting permission to conduct interviews. After agreement, the researcher sent information about the study and the researcher’s contact details to the staff member responsible for consumer engagement. Consumers interested in participating or requiring additional information contacted the researcher and were sent an introductory email, with an attached Participant Information and Consent Form (PICF). Our multistage sampling method was designed to account for the diverse recruitment channels within Integrated Cancer Services in Victoria, Australia, providing an equal opportunity for all eligible consumer representatives to express their interest in joining, subject to the ICS intermediary’s discretion. Sub-group sampling may have been considered had large numbers of consumer representatives expressed interest in participation.

The Managers of seven adult ICSs were approached and four (57%) agreed to distribute information to consumer representatives working with their ICS; one of two eligible metropolitan ICSs (50%) and three of five eligible regional ICSs (60%). A total of eight consumers requested additional information, and six participated the interviews. Of the recruited participants, two were from the metropolitan ICS, two from one regional ICS, and one each from the other two regional ICSs. Four of the participants were male and two female, aged between 40 and 59 years, and all had at least two years’ experience of being a consumer representative, with four of the six having more than five years’ experience. The number of consumers provided information by ICS staff members but not requesting further information is unknown.

Data collection

An interview guide (Appendix 1) was developed based on the relevant literature and framed by the intent of keeping the interviews informal and conversational. The interview questions were open-ended and the order varied depending on the flow of discussion; interviewees were encouraged by the interviewer to reflect openly on their experience and to bring up any topics they considered important.

Six 45-minute one-on-one semi-structured interviews were conducted between October and December 2021. Interviews were recorded and transcribed electronically by Zoom. After the interviews, the researcher compared the Zoom recordings to the transcription, correcting the content and anonymising participants’ identities. Interviewees were invited to comment or to make any changes they deemed necessary on their de-identified cleaned transcripts (only one requested minor changes).

As described by Vasileiou et al. [20] and in keeping with the interpretivist/constructivist research framework for the study, our methodology accounted for the function of data saturation as it relates to data adequacy, focusing on the richness of data collected from available study participants and the analysis of transcripts until no new topics of interest or themes are observed [25].

Data analysis

Inductive thematic analysis was conducted, using the structured approach of Clarke and Braun which involves six phases comprising: familiarising with the data through repeated reading; generating initial codes to identify key features of the data; searching for themes by grouping related codes; reviewing themes to refine and ensure they accurately reflect the data; defining and naming themes to clearly identify what each theme represents, and; producing the final report with a coherent narrative that captures the findings of the analysis [26]. The first phase began during the interviews as part of the constant comparative review. The cleaned and anonymised transcripts and notes made during the interviews and during the transcription work were imported into NVivo, Version 20.

A year after data collection, the analysis process recommenced. Collaboratively, through weekly discussion involving four researchers (DL, KL, GA and YZ), a set of codes was developed, refined and clustered into a thematic map. The interviewer (JM) reviewed the preliminary and final reports of results delivered by the new team, confirming the validity and saturation of the thematic analysis, and adding nuance and context to the interpretation.

Results

The analysis of consumers’ perspectives on their engagement in enhancing healthcare services led to the identification of three key topics responding to the research question, “What are the perspectives of cancer consumer representatives on their involvement in healthcare service improvement?“: (1) personal aspects of involvement; (2) practical contributions to improve health services; and (3) suggested directions for improving consumer involvement. The themes within each topic are depicted in Fig. 1. An illustrative quote is provided for each topic; the full set of illustrative quotes for each topic is presented in Tables 1, 2 and 3.

Fig. 1.

Topics and themes about cancer consumer representatives’ perspectives on their involvement in healthcare service improvement

Table 1.

Personal aspects of involvement (topic 1)

Theme	Subtheme	Illustrative quote
Motivations for taking the role	Attachment to local healthcare system	…well I’ve questioned my own motivation too because I almost feel, because at the time I was having treatment, we, beautiful new hospital was opening here and I just kind of feel part of something…I feel really yeah like attached, fond of it…
	Desire to improve services	…[I] was looking and feeling as well as I had for quite some time so that’s when I thought to myself well I should put something back into this thing as much as I can, so I put my hand up to be a reviewer for various grants…
	Desire to use knowledge gained as a patient	[Not] long post treatment I started to think “I should do something with all this new knowledge, I never knew anything about any of this before.” And you know, there was a few things where I thought ‘ah that could have been done better’.
	Desire to use knowledge gained as a carer	And the beauty for me was at the time, my [partner] had passed away in [hospital’s name], I became a consumer representative, because there are some issues there that I thought could have been fixed from a consumer’s point of view…
Challenges of committee involvement	Complex documents in short timeframes	… you would get this massive pile of papers to read… often very complex … and we’d get them, maybe on the Friday night before and the meeting is on a Tuesday morning at 7.30 or something and I did not have time to read all those papers.
	Intimidating environment	It’s a bit of a threatening and intimidating environment for most people, because you’re so aware that you’re sitting there with 20 people … who are extremely busy clinicians in a lot of cases. And you don’t want to take up all their time crapping on…
	Differences in expertise	I feel a bit, restricted is not the right word, but I don’t want to keep putting my hand up at some committee saying what do you mean by the xyz and they’ll look at me like I’ve got two heads.
Support experiences	Variable support	… it’s not universal… not all clinicians are open to hearing the lived experience.
	Matters beyond the committee’s remit	…parking is always an issue for cancer patients and consumers and over the years we’ve raised it, that many times and it’s, it’s just always kind of the walls come up and they will say you know the health service doesn’t look after the parking they’re privatized and blah blah blah… But you know the health services are probably limited as well because they’re working within the same constraints.
	Support from the Chair	…[name of Chair] will often when the conversation gets a little bit technical or goes off she’ll come straight to me: “[Name of consumer] what do you think? Does this make sense?“ Yep so she’s one of quite a few who… are thorough to refer things to me from a patient perspective.
	Support at organisational level	…we have a support officer from [name of ICS] … so she’s our coordinator support person, she’s fantastic and she’s really receptive to all the consumer sort of silly ideas, good ideas, whatever…I think that’s really important… having that independent support person in the organization that kind of looks after the consumers…
Concerns about narrow representation	Limits on ability to present others’ issues	I could only provide feedback in terms of my experience and […] it was a very positive one. I felt […] equipped to […] make a contribution, but I wasn’t typical I didn’t believe, of the folk that who we were targeting for the project…
	Lack of CALDa representation	…because I really worry our group is too white middle class well educated, you know we don’t really represent the full range of people who live in the region and um over the years we’ve tried to sort of target people from other communities.
Evolving identity as a representative	Learning development	…the whole time we were all kind of learning as well, because you know when you start you don’t think your experience and your knowledge is worth that much but, as you go on being a consumer, you find out that it’s worth a lot.
	Increasing confidence	…you do need to do it for quite a while to start to build up the confidence, to raise things in that kind of a forum… someone said to me, I just love how you how you just jump up and say things that the clinicians all disagree with but you don’t care you just go on.

^aCALD Culturally and linguistically diverse

Table 2.

Practical contributions to improve health services (topic 2)

Theme	Subtheme	Illustrative quote
Active committee involvement	Enhance utility of services	I find the most valuable thing[s] to do as a consumer, are project driven…[like] make less stressful the experience of regional cancer patients…And out of that came a…button on the [name of ICS] website where consumers could…find out where the best accommodation was or what was the easiest way to travel to wherever they were needing to be. So that was, it had a lot of positive outcomes.
	Cross-representation	…we have CAGa members who are also on other related support entities like breast cancer support groups or until very recently lymphedema support…and they were bringing voices from those groups into the CAG.
Consumer-led initiatives	Patient orientation tools	There is a woman called [name of consumer]…who has come up with the idea, through the Consumer Advisory Group, and along with [name of ICSb staff member]…of creating an information video for first time patients coming into the [name of city] Cancer Centre.
	Patient-centred resources	So we all thought there was a real need for a resource to help record all your information, keep it with you, have all your scans your medications all that with you…keep track of appointments that had you know, questions to ask and so it had sort of prompts…so the idea was to sort of help promote health literacy and control of your own health care… So, that was initiated by the consumers…
	Community education	…then we’ve done a few other things like we’ve developed a Community Ambassador program… just sort of try and help people be aware, I suppose, raise community awareness about the sorts of services that are available in the region.
	Research projects	So as a CAG member, with that hat on, and with my [name of university] academic hat, I took the lead in a research project that sought to describe as a logic model, describe this…nurse-based approach to skin cancer screening in an area where GP services were not optimal… there are many examples in our CAG of members taking on different kinds of projects, leading them, and using them as an evidence base to inform the board and the executive for practice, for cancer improvement initiatives and other cancer service improvements.

^aCAG Consumer Advisory Group

^bICS Integrated Cancer Services

Table 3.

Suggested directions for improving consumer involvement (topic 3)

Theme	Subtheme	Illustrative quote
Wider representation	Tools to find specific expertise	Some sort of a consumer register where people’s experience and you know there’s some privacy issues around all that I know but just the type of treatment people had and where they had it, and just their experience, their tumor treatment experience…could be somehow managed through a database where these people could be…sourced.
	Harness volunteers’ knowledge	Those volunteers who sit and listen to people and bring them a cuppa and bring them a biscuit or whatever. They must have a whole lot of knowledge in their head about what we’re going through or struggling with, and if we could harness that knowledge…that would reflect the consumer experience.
	Expose consumer representatives to others’ experiences	…it would be nice in one way to have an independent avenue where people could come to you and say ‘Oh look you’re a consumer rep could you put this problem up?’ Because we don’t advertise too much about what we do…That’s just my thought, that we should be a little bit more visual you know able to be seen and that we’re promoted by the system itself to be independent consumer reps.
	Avoid alienating language	…consumer to me has always suggested someone who has a choice to purchase something or a choice to partake of something - you don’t have a choice when cancer affects you… I think it [the term consumer] is a real problem… I think it probably is a barrier to some people being involved…
Desired changes at committee level	Flexible engagement practices	…maybe less barriers or [more] flexibility around how you can contribute so you know, for me, I can’t always be at the meetings but they say to me well that’s okay…when you read those papers and send us back your questions and thoughts that makes us think ‘oh we hadn’t thought of that’ or ‘that’s a good question’ so they are flexible in their approach in how I can contribute.
	Peer support	I think that that’s really important for consumers to feel it, you’re not there on your own so like when you go to a governance committee meeting to have another consumer there to know that you’re not the only non-clinician in the room…
Desired changes at health system level	Consistency	…you can have a change of personality come in, and you can drop from being involved to just being informed.…process and policy, once they’re in place people have got to follow it, but sometimes if the policy [on consumer involvement] is not clear enough interpretation [bias] may affect it. …I would like to see not a standard approach across the ICS but a locally determined active engagement process with consumers, with carers, with others within the system… I think it’s a dog’s breakfast if that’s a good description, certain areas like [name of regional city] are really heavily involved in design and governance, whereas some other areas may not be…As I say, when I say ‘dog’s breakfast’, every Integrated Cancer Service’s got a different perspective on how to use consumers.
Further facilitation of meaningful consumer involvement	Avoid tokensim	…one of the [clinicians] there absolutely ripped into me…she said: ‘people don’t have time for this!’. She just…And everything I raised she just seemed to have an answer to it and had that happened to me very early in my consumer time I would have absolutely, probably walked away… I thought, they’ve asked me to give up my time and attend this thing and give some input…
	Ubiquitous involvement	[My] hope is that, at the end of the day this industry is not about inventing a new radiation …tool or a new day oncology at home service until there’s a patient involved.
	Key role of committee Chair	…at first on the Governance Group, I may have felt that I was part of a requirement, but as time went by, the culture of that group, and, as I say, through the Chair, who is a great leader, it permeated from the top down a feeling in the meeting that…consumers are in an important voice and…a fundamental element of the process and a very essential voice in assessing what can be done to improve cancer care.
	Early involvement	In the very early planning [for a grant]…one of the issues…Integrated Cancer Services have had is how much input do [consumers] have into design…of particular programs…I think once you start putting pressure on people writing submissions looking for funding, if an essential part of that is to have consumer reps involved they’ve got to think how they get them involved and treat them as equal partners…

Topic 1: personal aspects of involvement

"Before I joined [name of ICS] one of the ladies who was a nurse in charge of the day oncology area …. tapped on my shoulder because I’d been a regular at the day oncology area for quite some time … she said, look we’ve just started the [name of] clinic we need a consumer to sit on the committee."

Participants described their personal experience of engaging with health service improvement in five ways: their motivations to be a cancer consumer representative; challenges they encountered in committee involvement; experiences of received support in their role as a consumer representative; concerns about how representative they were; and their evolving identity as a consumer representative (Table 1). Primary motivations for taking on the role focused on a sense of belonging to the local healthcare system, and a desire to improve healthcare services using experience as a cancer patient or having a close connection with cancer.

Participants reported a range of challenges as committee members, including unrealistic time commitments, a clinician-dominated environment, and differences in their level of expertise compared with clinicians and managers participating in these committees. Participants noted that support for their involvement was not universal; sometimes this related to practical matters outside of the committees’ main remit (e.g., patients’ access to parking). Participants also acknowledged the importance of support from other committee members in encouraging consumers to voice their perspectives, and the influence of the committee chair was recognised as a particularly important enabler. Support strategies included establishment of a standing agenda item for consumers in the meeting, routine clarification of professional jargon for consumers and regularly inviting consumer input.

The capacity to adequately represent the diversity of patient experiences was identified as a concern. For example, a participant who had a positive cancer experience perceived challenges in being able to adequately represent less satisfactory illness pathways. Another participant noted that their ability to advocate effectively on behalf of a broad community of cancer patients may be impacted by personal characteristics such as ethnicity, socioeconomic status, and educational background. During their time as representatives, consumers also became cognizant of their evolving identities as they adapted to their role. This was perceived as a personal journey of learning, accompanied by a growth in confidence.

Topic 2: practical contributions to improve health services

"What we were able to do is go through some of my issues and other carers’ issues and look at different systems, one of them, for instance, was we lived out of town, we came in to emergency and the interns or whoever you saw would look through the notes and everything before giving painkillers… a palliative care doctor who was at the meeting said …we should have a pass system which I agreed with straight through to palliative care where the nurses knew what to do, and they weren’t wasting time."

Participants made contributions to health service improvement primarily through actively engaging with committees and undertaking consumer-led projects, and some engaged with these activities at different times or simultaneously (Table 2). In both contexts, participants perceived their value lay in delivering a unique form of expertise drawn not only from their experiences with cancer, but also from their accumulated knowledge and skills and life experience prior to cancer (e.g., as academics, or working with media). Consumers felt they were able to offer valuable insights to enhance the utility of health services for other people living with cancer, their families and carers. Some consumers were also involved in multiple committees or support groups to maximise their contribution.

In addition to involvement in committees, some participants also took an active role in the development and implementation of diverse consumer-led initiatives. Examples of projects included an information video tailored for patients visiting the cancer centre for the first time, a personal medical record book to promote cancer patients’ health literacy and assist with self-care management and establishing a community ambassador program to raise community awareness about locally accessible cancer services. Participants with prior academic experience proactively led a range of research projects and utilised the resulting evidence to inform the improvement of cancer services through their committees.

Topic 3: suggested directions for improving consumer involvement

"But back then, there was nothing so if I look back over my time it has certainly changed a lot and it’s still changing and evolving …as consumers get more confident and louder...and as clinicians are required more and more to listen to them."

Participants suggested several ways to enhance engagement with consumers to improve cancer services: widening the diversity of representatives; making desired changes at both committee and health system levels; and further facilitating genuine and meaningful consumer engagement (Table 3). Strategies for widening diversity included establishing a database to help find advocates with specific skills, experiences or characteristics, engaging with volunteers who support a wide range of cancer patients in clinical settings and therefore have a broader appreciation of different cancer experiences, and exposing consumer representatives to unfamiliar cancer consumer organisations or a broader cancer population through undertaking a volunteer’s role.

Several barriers that impeded diversity in consumer representation, including using the label ‘consumer representative’ were discussed by participants. Half of respondents reported that the term ‘consumer’ did not align with their experience of being affected by cancer and they did not identify themselves as ‘consumers’. The use of the ‘consumer’ terminology in Australia may therefore limit involvement. It was also noted that when committees or groups were recruiting consumer representatives, labelling committees or groups by professional terminology such as ‘governance group’ and ‘palliative care [group]’, potentially excluded consumers who were not familiar with such terminology.

Directions for changes at committee level focused on greater flexibility in ways of engaging with consumer representatives to accommodate their time management needs and to ensure an open channel for the expression of their points of view. Involving more than one consumer representative in clinician-dominated committees could enhance their confidence to contribute as active members of such committees. At the health system level, the need for consistency in the attitudes of significant personnel to consumer engagement was advocated. Consumer representatives held different views about whether consumer engagement should be determined consistently across the ICSs or at local ICS level.

Although most participants perceived that the contribution of consumer representatives had markedly gained respect over time and was increasingly valued and appreciated, several pointed out that some health care professionals displayed tokenistic attitudes, making meaningful engagement challenging. The role of the committee Chair was highlighted as instrumental in facilitating genuine engagement with consumers and valuing consumer views. For projects or research, it was suggested that meaningful consumer involvement would be enhanced by consumer engagement at an early stage of project development including at the planning stages, to make projects relevant and meaningful to consumers.

Discussion

This study explored cancer consumers’ perspectives on their involvement in healthcare services improvement. Participants described adjusting to the contexts and requirements of the consumer representatives’ role and merging their cancer experiences with professional skills as they engaged with projects and committees. Importantly, participants highlighted that although consumer involvement in healthcare was generally expected and encouraged, ongoing improvements are needed to support greater engagement and meaningful involvement.

Consumers involved with committees experienced a range of challenges such as excessive workload, feeling intimidated in a clinician-dominated environment, and insecurity due to lack of clinical and management expertise in healthcare relative to other committee members. Our results align with previously published studies. In a recent Cochrane qualitative evidence synthesis of 33 studies, not restricted to cancer, eight studies found that health providers’ professional status and use of jargon were frequently identified as intimidating to patient representatives [27]. A separate interview study of long-term consumer involvement in cancer research, also from Victoria, Australia, found that managing timing and workload was a key barrier for consumers [28]. To overcome these challenges, participants in our study suggested involving at least two consumers in clinician-dominated committees and offering flexibility in the ways committees engaged with consumers. This echoes the findings of the Cochrane evidence synthesis which suggested that a third or more of a committee’s membership should comprise consumer members [27]. Further, it reflects the findings of a separate Canadian study that developed a patient and family engagement framework which recommended flexibility, for example permitting consumer participation from home [29].

The findings of our study bolster current literature [27] and highlight the importance of support by other committee members towards consumer representatives, with a crucial role played by the committee chair to facilitate consumer involvement. Staff of ICSs who are responsible for consumer engagement were also identified as important. The roles of actors at the organisational level have also been highlighted in a systematic review as being crucial in supporting patient engagement to enhance healthcare quality [30]. Some of our study participants voiced concerns that the consistency of consumer involvement may vary with changes in key personnel, suggesting the need for a high level of commitment of organisational leaders to address potential inconsistencies and complement the minimum consumer involvement standards specified by the ACSQHC [16].

Concerns were raised in our study that consumer representatives recognised their limitation to represent cancer patients and their families broadly, as individual consumer representatives inevitably drew on their own experiences, knowledge, and opinions. They recognised that their roles as representatives were limited by factors such as personal disease experience, ethnicity, educational background, and socioeconomic status. There is an important distinction between representation of one’s own experiences compared with representation of the experiences of consumers as a collective, as previously reported in mental health consumer advocacy [31]. Participants in our study recognised this distinction and called for a wider diversity among consumer representatives in terms of ethnicity, socio-economic status, level of education and a variety of healthcare experiences whether positive or negative.

Practical strategies to enhance diversity of consumer representatives include harnessing the knowledge gained by volunteers who provide day-to-day support to broadly diverse cancer patients. While the important role played by cancer centre volunteers as a vital complement to health professionals has been recognised [32], our participant’s suggestion that volunteers who support a broad variety of cancer patients in clinical environments could become a valuable resource for advocacy is novel. Potential ethical concerns related to this approach have been explored in a systematic review which identified that informed consent, the right to privacy, and the need to keep health and personal information confidential when representing the experiences of others, were important considerations [33]. The need for mechanisms such as a database that identifies consumer representatives with specific experience and expertise relevant to particular diseases, medical contexts or specialised clinical research was suggested in our study. There may be a role for consumer organisations such as the existing peak bodies, e.g., the Consumers Health Forum of Australia, or Cancer Voices Australia who already support processes through which consumers willing to take on the role of representatives can be recruited [34, 35].

Contention about the use of the term ‘consumer’ was evident in our study, with participants expressing that they did not identify with that term, and it may alienate potential representatives who are unfamiliar with the terminology and what it means in the context of representation on a committee or another governance body in healthcare. A scoping review including 47 studies of healthcare recipients found that the majority, including individuals impacted by cancer, prefer terms other than ‘consumer’; ‘patient’ was the most common preferred term in general healthcare (27 of 33 studies), and ‘survivor’ among cancer survivors (5 of 8) [36]. A similar preference for ‘patient’ has been found in relation to terminology used for reporting data [37]. A variety of alternative terms (such as patient advocates, clients, and lay people) have been suggested for use in different contexts [38], and the use of alternatives may be worth considering when recruiting consumer representatives. In other contexts, for example in the rare disease sector, the term “persons living with a rare disease” has been adopted by the United Nations to describe persons affected by rare diseases including family members and caregivers who may not have the rare disease themselves, but who nevertheless have lived experience of the disease or condition [39, 40]. This approach may also be helpful in the area of cancer where the terms “patient” or “cancer survivor” is limited to people who currently have or have had cancer, and where representatives on committees may be people close to a patient with cancer or a cancer survivor.

Despite debate over terminology, both the Cochrane Collaboration and the UK National Cancer Research Institute continue to use the word ‘consumer’ for their advocates, noting that terms like ‘patient’ and ‘carer’ do not capture the rich experiences and backgrounds of many advocates [41, 42]; the international Cochrane Collaboration adopted the term ‘consumer’ in the early 1990s from its Australian arm [41]. The term ‘consumer’ is also liberally used in the ACSQHC Partnering with Consumers Standards of 2010 and 2021 [43, 44], suggesting that this terminology is established and likely to persist. Within the Cochrane Collaboration, the use of ‘consumer’ may be traced back to the introduction of patient advocacy programs. Hilda Bastian suggested three decades ago that ‘consumer’ may end up being the preferred term despite the suggestion of a commercial relationship [45].

Our participants reported a variety of significant contributions made through committee involvement and by undertaking various consumer-led initiatives to improve cancer services. In consumer-dominated groups, participants reported having more autonomy to develop and implement a variety of consumer-led initiatives from patient orientation through to research and community education. In contrast, when they engaged in more formal committees, they felt their contribution was often more constrained. This is broadly reflected with the role descriptions outlined in a recent report of Health Consumers NSW and in a Victorian guide for establishing Consumer Advisory Groups [46, 47].

Representatives in our study also talked about the attitudes of some committee members who made little effort to actively include the views of consumer representatives in deliberations and decision-making. Cancer Australia provides advice on developing inclusive groups [48]. Committees that include consumer representatives should undertake regular training to develop and practice behaviours that support the meaningful involvement of consumer representatives.

Potential limitations of the study may relate to the small pool of individuals serving as consumer representatives, although we recruited consumers from 57% of the eligible adult Integrated Cancer Services in Victoria, providing a substantial representation of available advocates. We did not explore the influences of factors such as cultural and linguistic diversity, age, gender or the cancer experiences of participants in their roles as consumer representatives, and this should be a priority for future research. Additionally, our participants were all experienced in their role; exploration of the perspectives of newly commencing consumer representatives may be valuable in identifying the support and guidance they would appreciate in this early phase.

Conclusions

Our study has provided insights into the perspectives of consumer representatives in an Australian context and characterised their contributions to the enhancement of cancer services. By understanding their real-world personal experiences, we identified the challenges they face and the factors that facilitate authentic involvement. The strategies proposed in our study have the potential to elevate consumer input and engagement, paving the way for more effective patient-centred planning and implementation of cancer services in diverse healthcare systems. Larger studies of the experiences of diverse consumer representatives in different contexts are needed to boost the value that consumer involvement brings to healthcare. Importantly, the views of other members of committees and governing bodies, including clinicians, managers and organisational leaders, should also be explored.

Electronic supplementary material

Below is the link to the electronic supplementary material.

Authors’ contributions

JM, GA and YZ conceptualised and designed the study. JM collected all data. DL performed data analysis, and with KL, GA and YZ interpreted the analysis results. DL and GA drafted the manuscript. All authors (DL, JM, KL, GA, JB, YZ) revised the manuscript and approved the final manuscript.

Funding

This study was partially funded by the NHMRC Centre for Research Excellence in Implementation Science in Oncology (CRE-ISO; Grant/Award number:1135048) administered by the Australian Institute of Health Innovation and by the NHMRC Partnership Centre of Health System Sustainability (Grant/Award number:9100002).

Availability of data and materials

The de-identified qualitative interview data were collected specfically for this study and remain private and confidential according to the Australian National Statement on Ethical Conduct in Human Research. Reuse of the data for secondary analysis would require additional ethical approval, after agreement with the authors.

Declarations

Ethics approval and consent to participate

The study was performed in accordance with the Declaration of Helsinki. Ethical approval was obtained from the Macquarie University Human Research Ethics Committee (Ref. No. 52021985830344) and Austin Health Human Research Ethics Committee (Ref. No. LNR 77466/2021). Participants were provided with a Participant Information and Consent Form (PICF) and informed consent was obtained from all participants.

Consent for publication

All participants provided written consent according to the Patient Information and Consent Form approved by the Human Research Ethics Committees, which outlined the avenues for disseminating the study findings.

Competing interests

The authors declare no competing interests.