A stakeholder-involved adaptation of pathways and resources for engagement and participation (PREP) material with young adults with complex disability in Australia: an implementation feasibility study.

PURPOSE: Pathways and Resources for Engagement and Participation (PREP) is an intervention to optimise individuals' participation by building problem-solving capacity and addressing environmental barriers. We investigated the feasibility of implementing PREP with young adults (18-30 years) with complex disability in Australia. MATERIALS AND METHODS: Explanatory sequential mixed methods study in three stages. (i) PREP materials were collaboratively adapted by the research team and consumer research partners. (ii) Steps 1 and 2 of PREP (YA Supplement) were completed with three young adults with disability, and preliminary feasibility explored using qualitative methods. (iii) The feasibility of implementing adapted materials was examined using quantitative and qualitative methods involving four young adults with disability, six support people and two service providers. RESULTS: Stage 1: PREP Young Adults Supplement (PREP (YA Supplement)) for use alongside PREP was developed. Stages 2 and 3: findings indicated PREP (YA Supplement) was acceptable, appropriate and feasible. Three themes were identified: setting and achieving goals were associated with challenges and benefits; finding the right time to implement the program was necessary; and PREP (YA Supplement) drives a shift to a participation-focused approach. CONCLUSION: PREP delivered alongside PREP (YA Supplement) appears feasible with Australian young adults with complex disability.

A novel supplement for the evidence-based Pathways and Resources for Engagement and Participation (PREP) intervention has been developed to enhance participation in life situations for young adults with disability in an Australian context (PREP Young Adult Supplement).Setting participation goals may be a substantial shift for young adults with disability and rehabilitation professionals, and involves considering attendance at, and involvement in, life situations.Implementation of PREP/PREP Young Adult Supplement is inherently flexible and can be adapted to suit the needs, preferences and circumstances of the participant.

Co-creating and hosting PxP: a conference about patient engagement in research for and by patient partners.

Research projects, initiatives and conferences that include patients as partners rather than as participants are becoming more common. Including patients as partners (what we will call 'patient partners') is an approach called patient engagement or involvement in research, and we will call it patient engagement throughout this paper. Patient engagement moves traditional health research conferences and events to include a broader audience for their knowledge exchange and community building efforts, beyond academics and healthcare professionals. However, there are few examples of conferences where patients are given the opportunity to fully lead. Our conference went beyond patient engagement - it was patient-led. Patient partners conceived, planned, and decided on all aspects of a virtual conference.We present the work and processes we undertook throughout 2023 to create and produce a free conference called "PxP: For patients, by patients" or PxP for short, with a tagline of "Partnering to make research stronger." PxP was patient-led and about patient engagement in research rather than a specific disease or condition. PxP was supported by the Canadian Institutes of Health Research Institute of Musculoskeletal Health and Arthritis. The PxP website, known as the PxP Hub, now houses the conference recordings along with resources about patient engagement in research. These resources were recommended by the PxP Steering Committee members, speakers, and others who attended the 2023 conference. Here we lead you through how the idea for PxP was generated; how the international patient partner Steering Committee was convened and supported; how PxP was brought to life over nine months; the PxP 3-day event and feedback collected to improve future efforts; trade-offs, challenges and learnings; and resources required to support this type of event. We close with what the future holds for PxP in 2024 and beyond.It's time to elevate patients into leadership roles for conferences and events, and we encourage you to adopt the PxP ethos by using or adapting our approach and resources to support your opportunity.

Consumer involvement and guiding frameworks in mental healthcare: An integrative literature review.

Perspectives of healthcare have, in past decades, focused more on active citizenship, human rights and empowerment. Healthcare consumer involvement as a concept is still unstructured and consumers have no apparent opportunities to participate in their care processes. The focus is often on the expertise of professionals, even if mental health consumers are willing to become involved and have sufficient decisional capacity. The aim of this integrative literature review was to construct an understanding of consumer perceptions and guiding frameworks of consumer involvement. There was no previous synthesis of mental health consumer perceptions combined with guiding frameworks. An integrative review methodology was employed, following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. The quality of the 18 studies included was analysed with the Whittemore and Knafl approach. By following Braun and Clarke's guidelines, an inductive thematic analysis was conducted to collate the themes from the selected papers. Mental health consumers' perceptions of involvement included expectations of person-centred care, such as respect, dignity, equal interaction, supportive environments and being part of a community. This research did not find any single established framework to give clear guidelines for consumer involvement in mental healthcare, but similar determinants describing various frameworks were uncovered. This review also shows how the terminology has changed throughout the years. The perceptions of mental health consumers need to be considered to enable the implementation of person-centredness from guidelines through to practice. Paying more attention to the education of professional mental health caregivers and the involvement of mental health consumers in their care provides better opportunities to co-develop successful mental health services and recovery processes.

Caregiver perspectives of scoliosis surgery for children with cerebral palsy: a qualitative study.

PURPOSE: To explore the perspectives of primary caregivers of children with cerebral palsy (CP) who had spinal surgery for scoliosis. MATERIALS AND METHODS: A qualitative study was conducted using semi-structured interviews and guided by qualitative description methodology. Participants were caregivers of children with CP aged 5-18, who had undergone spinal surgery for scoliosis in Australia. The research team included a parent with lived experience. RESULTS: Fourteen participants (8 biological mothers), aged 40-49 years, completed online semi-structured interviews. Four themes were identified emerged. Life with a child with CP underpinned all experiences which were founded on familiarity with their child, medical procedures, and hospitalisation. Three subthemes were parents are the experts in knowing their child, children are vulnerable, and impact on caregivers. Theme 2 involved the significance of decision making to proceed with surgery. Theme 3 underscored a need to be prepared for the surgical journey and, in Theme 4, participants spoke of needing to expect the unexpected. CONCLUSION: The findings highlight the importance of understanding caregiver experiences and can help inform health professionals and other families in the decision-making process, preparing for and navigating spinal surgery.

Spinal surgery for scoliosis in children with cerebral palsy is a major surgery and poses substantial challenges for the family.Understanding the magnitude of the decision for families to proceed with surgery will equip health professionals to adequately support and partner with families.Detailed information and extensive preparation are necessary for families to proceed with and navigate surgery, the hospital stay and to return home and to the community.

The impact of a regionally based translational cancer research collaborative in Australia using the FAIT methodology.

BACKGROUND: Translating research, achieving impact, and assessing impact are important aspirations for all research collaboratives but can prove challenging. The Hunter Cancer Research Alliance (HCRA) was funded from 2014 to 2021 to enhance capacity and productivity in cancer research in a regional centre in Australia. This study aimed to assess the impact and benefit of the HCRA to help inform future research investments of this type. METHOD: The Framework to Assess the Impact from Translational health research (FAIT) was selected as the preferred methodology. FAIT incorporates three validated methodologies for assessing impact: 1) Modified Payback; 2) Economic Analysis; and 3) Narrative overview and case studies. All three FAIT methods are underpinned by a Program Logic Model. Data were collected from HCRA and the University of Newcastle administrative records, directly from HCRA members, and website searches. RESULTS: In addition to advancing knowledge and providing capacity building support to members via grants, fellowships, scholarships, training, events and targeted translation support, key impacts of HCRA-member research teams included: (i) the establishment of a regional biobank that has distributed over 13,600 samples and became largely self-sustaining; (ii) conservatively leveraging $43.8 M (s.a.$20.5 M - $160.5 M) in funding and support from the initial $9.7 M investment; (iii) contributing to clinical practice guidelines and securing a patent for identification of stem cells for endometrial cell regeneration; (iv) shifting the treatment paradigm for all tumour types that rely on nerve cell innervation, (v) development and implementation of the world's first real-time patient treatment verification system (Watchdog); (vi) inventing the effective 'EAT' psychological intervention to improve nutrition and outcomes in people experiencing radiotherapy for head and neck cancer; (vi) developing effective interventions to reduce smoking rates among priority groups, currently being rolled out to disadvantaged populations in NSW; and (vii) establishing a Consumer Advisory Panel and Consumer Engagement Committee to increase consumer involvement in research. CONCLUSION: Using FAIT methodology, we have demonstrated the significant impact and downstream benefits that can be achieved by the provision of infrastructure-type funding to regional and rural research collaboratives to help address inequities in research activity and health outcomes and demonstrates a positive return on investment.

Consumer involvement in the development and dissemination of chronic kidney disease guidelines: a summary of a meaningful and sustainable approach developed by Caring for Australians and New ZealandeRs with kidney Impairment guidelines.

OBJECTIVES: The involvement of consumers (people with lived experience of disease) in guidelines is widely advocated to improve their relevance and uptake. However, the approaches to consumer involvement in guidelines vary and are not well documented. We describe the consumer involvement framework of Caring for Australians and New ZealandeRs with kidney Impairment Guidelines. STUDY DESIGN AND SETTING: We used a descriptive document analysis to collate all relevant policies, documents, e-mails, and presentations on consumer involvement in our organizations. We performed a narrative synthesis of collated data to summarize our evolving consumer involvement approach in guidelines. RESULTS: We involve consumers at all levels of Caring for Australians and New ZealandeRs with kidney Impairment guideline development and dissemination according to their capacity, from conducting consumer workshops to inform the scope of guidelines, to including consumers as members of the guideline Working Groups and overseeing operations and governance as members of the Steering Committee and staff. Our approach has resulted in tangible outcomes including high-priority topics on patient education, psychosocial care, and clinical care pathways, and focusing the literature reviews to assess patient-important outcomes. The ongoing partnership with consumers led to the generation of consumer version guidelines to improve guideline dissemination and translation to support shared decision-making. CONCLUSION: Meaningful consumer involvement can be achieved through a comprehensive approach across the entire lifecycle of guidelines. However, it must be individualized by ensuring that the involvement of consumers is timely and flexible. Future work is needed to assess the impact of consumer involvement in guideline development.

Co-designing a personalised care plan for patients with rectal cancer: reflections and practical learnings.

BACKGROUND: Consumer involvement is considered an essential component of contemporary cancer research, with a movement towards participatory methods, to the benefit of consumers and researchers. Overall, in-depth research on participant experiences and perceptions of their co-designer role-and how these may (or may not) change during a co-design project-is limited. The purpose of this paper was to synthesise the reflective accounts of consumers, project staff, and a researcher who partnered on a project to develop a personalised care plan template, with the aim of generating guidance for others looking to partner with consumers in health and medical research. Here, our team of researchers, project staff, and consumers reflect on the experience of working together using Gibbs' Reflective Cycle, which was completed by team members with responses then undergoing inductive data analysis. RESULTS: Reflections are categorised under three core themes: (1) setting up the group and building relationships (2) measuring the value of consumer involvement, and (3) potential challenges for consumer involvement. Through reflection on our experiences of co-design, our team developed and identified practical strategies that contributed to the success of our partnership. These include setting expectations as a group; having experienced consumers on the team; having regular, pre-scheduled meetings that run to time; and working to overcome challenges identified by the group such as power imbalances, time commitment, and lack of diversity. CONCLUSION: These practical reflections on creating a safe and supportive environment in which genuine consumer involvement can take place could inform other institutions and researchers looking to work meaningfully with consumers in research.

Consumer involvement in cancer research can inform the initial setting of research priorities, and then the design and conduct of research, with a view to optimising research impact. As part of a project to develop a personalised care plan for patients with newly diagnosed rectal cancer, our team of medical oncologists and project staff partnered with a group of consumers from project initiation. Here, we reflect on our experiences, including the benefits and challenges associated with consumer involvement. Positive aspects of the partnership between consumers, project staff, and the researcher included the establishment of a cohesive team, which substantially improved the study design, conduct, and study outcomes. This experience increased the enthusiasm of the project staff and researcher for consumer engagement in future research. Things that negatively impacted the team included the loss of consumers due to cancer-related health issues. A lack of diversity in the consumer group was recognised as a limitation of the breadth of the consumer voice throughout the project. Upon reflection, there were many important learnings regarding meeting preparation, structure, and team culture that we discuss here, looking to provide practical guidance on optimising consumer involvement.

Protocol for co-producing a framework and integrated resource platform for engaging patients in laboratory-based research.

BACKGROUND: Patient engagement in research is the meaningful and collaborative interaction between patients and researchers throughout the research process. Patient engagement can help to ensure patient-oriented values and perspectives are incorporated into the development, conduct, and dissemination of research. While patient engagement is increasingly prevalent in clinical research, it remains relatively unrealized in preclinical laboratory research. This may reflect the nature of preclinical research, in which routine interactions or engagement with patients may be less common. Our team of patient partners and researchers has previously identified few published examples of patient engagement in preclinical laboratory research, as well as a paucity of guidance on this topic. Here we propose the development of a process framework to facilitate patient engagement in preclinical laboratory research. METHODS: Our team, inclusive of researchers and patient partners, will develop a comprehensive, empirically-derived, and stakeholder-informed process framework for 'patient engagement in preclinical laboratory research.' First, our team will create a 'deliberative knowledge space' to conduct semi-structured discussions that will inform a draft framework for preclinical patient engagement. Over the course of several sessions, we will identify actions, activities, barriers, and enablers (e.g. considerations and motivations for patient engagement in preclinical laboratory research, define roles of key players). The resulting draft process framework will be further populated with examples and refined through an international consensus-building Delphi survey with patients, researchers, and other collaborator organizations. We will then conduct pilot field tests to evaluate the framework with preclinical laboratory research groups paired with patient partners. These results will be used to create a refined framework enriched with real-world examples and considerations. All resources developed will be made available through an online repository. DISCUSSION: Our proposed process framework will provide guidance, best practices, and standardized procedures to promote patient engagement in preclinical laboratory research. Supporting and facilitating patient engagement in this setting presents an exciting new opportunity to help realize the important impact that patients can make.

Engaging patients as partners or collaborators in clinical research is becoming more common, but it is still new in preclinical research. Preclinical researchers work in laboratories on cell and animal experiments. They traditionally don't have frequent interactions with patients compared to their clinical research colleagues. Integrating patient engagement in preclinical laboratory research may help ensure that patient perspectives and values are considered. To help preclinical laboratory research align with patient-centred priorities we propose the development of a practical framework. This framework will facilitate patient engagement in preclinical laboratory research. To achieve this, we will first hold in-depth discussions with patient partners, researchers, and other collaborators to understand views on patient engagement in preclinical laboratory research. Together, we will identify key considerations to draft a framework, including motivations for patient engagement in preclinical laboratory research, and defining the roles of those who need to be involved. We will refine the framework through an international survey where we will collect feedback from researchers, patient partners, and other collaborators to make further improvements. The framework will then be tested and refined by preclinical laboratory teams inclusive of patient partners. The finalized framework and other resources to facilitate patient engagement in preclinical laboratory research will be hosted in a 'one-stop-shop' of online resources. Ultimately, this framework will enable partnerships between patients and researchers and provide a roadmap for patient engagement in preclinical laboratory research. This presents an exciting new opportunity for patients and researchers to collaborate and potentially improve translation of laboratory-based research.

From a Single Voice to Diversity: Reframing 'Representation' in Patient Engagement.

There has been a growing emphasis on consumer representation in the development of health policy, services, research, and education. Existing literature has critiqued how discourses of representativeness can disempower consumers working in health systems. The context of the current study is consumer engagement in the development of COVID-19 triage policy and practice in a local health service. Consumer engagement has often been an afterthought in the COVID response, with few examples of consumers in agenda-setting or decision-making roles. In the Australian Capital Territory, 26 consumer, carer, and community groups worked together with academics and clinicians to develop these principles. Interviews were conducted with stakeholders (including consumers, clinicians, and other health professionals) to evaluate the development of triage principles. A discursive psychological approach to analysis was used to explore participants' understandings about and constructions of consumers being representative (or not) and how this may reproduce power imbalances against consumers. The results explore two distinct ways in which participants talked about consumer representativeness: the first drawing on rhetoric about consumers as lay members of the public (as distinct from being professionally engaged in the health sector), and the second in terms of consumer representatives being diverse and having intersectional identities and experiences. Expectations about consumers to be representative of the general population may reproduce traditional power imbalances and silence lived experience expertise. These power imbalances may be challenged by a shift in the way representativeness is conceptualised to requiring health services to seek out diverse and intersectionally marginalised consumers.

A model for the involvement of service users as instructors into the psychiatric nursing curriculum in Korea: A qualitative study on participation experience.

For many years, attempts have been made to incorporate service users into psychiatric nursing education, particularly in European countries and Australia. In Asian countries, however, concrete examples of this are notably scarce, and the limited instances of implementation lack the necessary systematic organisation and long-term sustainability. This study systematically planned and implemented a psychiatric nursing curriculum that integrated service users in Korea. It explored the experiences of 14 nursing students and four service users (who participated as instructors) who participated in these classes. Content analysis was performed on the results of focus group interviews with the participants. Owing to the participation of service users in the programme, students focused more on the patients as human beings, with the contexts of their individual lives, rather than on their diseases. The process facilitated a deeper grasp of person-centred psychiatric nursing and heightened student engagement in the learning process. The service users' experiences as instructors breathed new meaning into their psychiatric distress as an opportunity for new possibilities and helped them view themselves in a positive light, as members of society with self-esteem. They made great efforts to perform well in their role as instructors. These findings provide substantial evidence to support the expanded and sustained implementation of service user participation in future psychiatric nursing education. Establishing a national consortium to foster and support service user instructors could greatly improve psychiatric nursing education and related outcomes.

Attitudes on Artificial Intelligence use in Pediatric Care From Parents of Hospitalized Children.

INTRODUCTION: Artificial intelligence (AI) may benefit pediatric healthcare, but it also raises ethical and pragmatic questions. Parental support is important for the advancement of AI in pediatric medicine. However, there is little literature describing parental attitudes toward AI in pediatric healthcare, and existing studies do not represent parents of hospitalized children well. METHODS: We administered the Attitudes toward Artificial Intelligence in Pediatric Healthcare, a validated survey, to parents of hospitalized children in a single tertiary children's hospital. Surveys were administered by trained study personnel (11/2/2021-5/1/2022). Demographic data were collected. An Attitudes toward Artificial Intelligence in Pediatric Healthcare score, assessing openness toward AI-assisted medicine, was calculated for seven areas of concern. Subgroup analyses were conducted using Mann-Whitney U tests to assess the effect of race, gender, education, insurance, length of stay, and intensive care unit (ICU) admission on AI use. RESULTS: We approached 90 parents and conducted 76 surveys for a response rate of 84%. Overall, parents were open to the use of AI in pediatric medicine. Social justice, convenience, privacy, and shared decision-making were important concerns. Parents of children admitted to an ICU expressed the most significantly different attitudes compared to parents of children not admitted to an ICU. CONCLUSIONS: Parents were overall supportive of AI-assisted healthcare decision-making. In particular, parents of children admitted to ICU have significantly different attitudes, and further study is needed to characterize these differences. Parents value transparency and disclosure pathways should be developed to support this expectation.

Improving the capacity of researchers and bereaved parents to co-design and translate stillbirth research together.

BACKGROUND: Working with bereaved parents in co-designed stillbirth research, policy and practice is essential to improving care and outcomes. PROBLEM: Effective parent engagement is often lacking. This may be due to bereaved parents not feeling adequately and appropriately supported to be involved. AIM: To consult bereaved parents with the aim to understand their experiences, attitudes, and needs around involvement in stillbirth research and gain feedback about the usefulness and appropriateness of a proposed co-designed guide to support their involvement, including content and design aspects of this resource. METHODS: An online co-designed survey was disseminated via Australian parent support organisations social media in August 2022. FINDINGS: All 90 respondents were bereaved parents, 94% (n = 85) were female. Two-thirds (67%, n = 60) had never participated in stillbirth research, 80% (n = 72) agreed involvement of bereaved parents in research was important or extremely important and 81% (n = 73) were interested in future research involvement. Common motivations for involvement were wanting to leave a legacy for their baby and knowing research outcomes. Common barriers included not having been asked to participate or not knowing how. Most (89%, n = 80) agreed the proposed guide would be useful. Highly valued topics were the importance of bereaved parents' voices in stillbirth research and how they can make a difference. CONCLUSION: The majority of bereaved parents we surveyed want to be involved in stillbirth research and would value a resource to support this. The proposed concept and content for a co-designed guide to aid engagement was well supported.

Revisiting the policy ecology framework for implementation of evidence-based practices in mental health settings.

BACKGROUND: Over the past three decades, policy actors and actions have been highly influential in supporting the implementation of evidence-based practices (EBPs) in mental health settings. An early examination of these actions resulted in the Policy Ecology Framework (PEF), which was originally developed as a tactical primer for state and local mental health regulators in the field of child mental health. However, the policy landscape for implementation has evolved significantly since the original PEF was published. An interrogation of the strategies originally proposed in the PEF is necessary to provide an updated menu of strategies to improve our understanding of the mechanisms of policy action and promote system improvement. OBJECTIVES: This paper builds upon the original PEF to address changes in the policy landscape for the implementation of mental health EBPs between 2009 and 2022. We review the current state of policy strategies that support the implementation of EBPs in mental health care and outline key areas for policy-oriented implementation research. Our review identifies policy strategies at federal, state, agency, and organizational levels, and highlights developments in the social context in which EBPs are implemented. Furthermore, our review is organized around some key changes that occurred across each PEF domain that span organizational, agency, political, and social contexts along with subdomains within each area. DISCUSSION: We present an updated menu of policy strategies to support the implementation of EBPs in mental health settings. This updated menu of strategies considers the broad range of conceptual developments and changes in the policy landscape. These developments have occurred across the organizational, agency, political, and social contexts and are important for policymakers to consider in the context of supporting the implementation of EBPs. The updated PEF expands and enhances the specification of policy levers currently available, and identifies policy targets that are underdeveloped (e.g., de-implementation and sustainment) but are becoming visible opportunities for policy to support system improvement. The updated PEF clarifies current policy efforts within the field of implementation science in health to conceptualize and better operationalize the role of policy in the implementation of EBPs.

Patients' perspectives on the relevance of biosimilars' outcomes in oncology: qualitative study with nominal group technique.

PURPOSE: We aimed to rate the importance of outcomes from a systematic review about biosimilars in oncology from patients' perspective. METHODS: This is a qualitative research with nominal group technique. Patients with cancer were selected by convenience sampling and invited for two mediated virtual meetings in 2022. Twelve outcomes from a systematic review on biosimilars for oncology developed following a protocol were explained in plain language to participants who classified them as critical, important, or not important according to the Grading of Recommendations Assessment, Development and Evaluation approach. We employed Iramuteq software for lexical categorization of the meeting transcripts, and content analysis for interpretation. RESULTS: Five women participated (three had metastatic cancer, one non-metastatic, one recurrent). Six outcomes were classified as critical: duration of response, progression-free survival, pathological complete response, overall survival, severe adverse events, and quality of life; three as important: mortality, event-free survival, and objective response; and three as non-important: neutralizing anti-drug antibody, any adverse event, and non-neutralizing anti-drug antibody. Duration of response, pathological complete response, severe adverse events, and quality of life were considered secondary in the review protocol, but critical by the patients. The main themes influencing the importance classification were related to the disease (progression and control) and treatment (recognition and healthcare setting). CONCLUSION: Patients rated most outcomes as critical or important, some of them previously regarded as secondary by the researchers, which reinforces the need to include stakeholders' perspectives in oncology research. Aspects of the disease progression and treatment effects influenced participants' judgment on outcomes' relevance.

Partnering with patients and caregivers to enrich research and care in kidney disease: values and strategies.

Patient and caregiver involvement broadens the scope of new knowledge generated from research and can enhance the relevance, quality and impact of research on clinical practice and health outcomes. Incorporating the perspectives of people with lived experience of chronic kidney disease (CKD) affords new insights into the design of interventions, study methodology, data analysis and implementation and has value for patients, healthcare professionals and researchers alike. However, patient involvement in CKD research has been limited and data on which to inform best practice is scarce. A number of frameworks have been developed for involving patients and caregivers in research in CKD and in health research more broadly. These frameworks provide an overall conceptual structure to guide the planning and implementation of research partnerships and describe values that are essential and strategies considered best practice when working with diverse stakeholder groups. This article aims to provide a summary of the strategies most widely used to support multistakeholder partnerships, the different ways patients and caregivers can be involved in research and the methods used to amalgamate diverse and at times conflicting points of view.

Dairy purchase behaviors: Increasing understanding of Chinese consumers using a consumer involvement segmentation approach.

Understanding consumers' purchase behaviors is fundamental to the success of the dairy industry. With its economic importance, the Chinese market is critical to dairy producers in most countries around the world. However, understanding consumers in this market is particularly challenging, as these consumers often have a different relationship with dairy products than consumers elsewhere in the world, given the country's historical dairy-related scandals. This special relationship can be characterized by what consumer behavior researchers call "high involvement," indicating that Chinese dairy consumers often attempt to reduce the level of risk associated with buying dairy products. Surprisingly, although this relationship affects several important aspects of purchase behavior, examination of the concept of involvement in the dairy sector has not been widely considered. Of note, there is no understanding of how Chinese consumers vary in their involvement levels and their implications on their dairy purchase behaviors. Nor have there been involvement-based insights provided on how dairy companies can position their marketing strategy to suit the needs of these consumers better. Thus, this study proposes a new approach to understanding Chinese consumer dairy decisions by introducing "consumer involvement" as a segmentation tool through which individuals' behaviors can be predicated according to their involvement profile. Based on an online survey administered in Shanghai using 1,073 dairy consumers, principal component analysis confirmed involvement with dairy is a multidimensional construct with the following 4 factors: pleasure value, symbolic value, risk importance, and risk probability. A 2-step cluster analysis identified 4 consumer clusters based on their involvement profile: face-concerned dairy lover, carefree dairy consumer, cautious dairy lover, and confused dairy consumer. According to a one-way ANOVA test and cross-tabulation with χ2 test, these consumer segments behave differently in relation to the extensiveness of decision making, cue utilization, trust of information sources, and consumption behavior. The outcomes in this paper further explain why efforts to restore consumer trust for dairy products do not work among some consumers, as individuals may exhibit diverse attitudes toward such information due to their heterogeneous involvement levels. The study also provides suggestions for market practitioners and organizations to develop effective target market strategies and policies according to different consumer clusters.

Development of a consumer involvement strategy for a small university-based musculoskeletal research centre.

OBJECTIVE: To develop a Consumer Involvement Strategy which adheres to best practice recommendations and is feasible to implement in a small musculoskeletal research centre funded solely by external grants. METHODS: The Strategy development involved five collaborative and iterative stages: (1) conceptualisation and initial consultation; (2) formation of the Consumer Involvement Strategy Action Group; (3) defining the scope and developing the strategy; (4) consultation and refinement; and (5) presentation and implementation. The final three stages were overseen by a Consumer Involvement Strategy Action Group comprising two post-doctoral research fellows, a PhD student representative, and two consumers (people with osteoarthritis), all with experience in consumer involvement activities in research. RESULTS: The final strategy aligns with best practice recommendations and includes five unique levels of consumer involvement that were devised to encompass the wide variety of consumer involvement activities across the research centre. It includes a policy document with five strategic aims, each supported by an implementation plan, and includes a suite of resources for researchers and consumers to support its application. CONCLUSION: The Consumer Involvement Strategy and its described development may serve as a template for other research teams facing similar resource constraints, both at a national and international level.

Bringing researchers to the consumer table: The process and outcomes of a consumer roundtable on telehealth.

INTRODUCTION: Despite the significant expansion and rapid uptake of telehealth services as a COVID-19 response, the pandemic restricted opportunities to involve health consumers in telehealth research. Authentic consumer and community involvement in research begins with engagement in priority-setting. We report here on the process and outcomes of a consumer-led event intended to support involvement of consumers, from early in the research process. METHODS: In 2022, The University of Queensland's Consumer and Community Network hosted a Consumer Roundtable to 'bring researchers to the consumer table' and explore emerging issues and priorities for future research. The event used World Café Method, with three 20-min rounds of small group discussion centred on questions about telehealth experiences, followed by a facilitated harvest discussion about future research directions. Participants' notes from small group discussions were subjected to conventional inductive content analysis, and a visual record was created in real-time by a graphic artist. RESULTS: Twenty-eight consumers and 22 researchers took part. Content analysis identified three main foci from discussions: person-centred care, better access to better care, the (unrealised) potential of telehealth. Research questions prioritised by consumer vote focussed on marginalised groups and stigmatised conditions; differences between telehealth and face-to-face healthcare delivery; and the experience of conveying and receiving compassion via telehealth. DISCUSSION: The Consumer Roundtable created early engagement between health consumer representatives and telehealth researchers, which has yielded ongoing partnerships. World Café method proved particularly useful for seeding relationships between researchers and consumers. However, there was limited opportunity to generate consensus about research priorities.

Researcher Perceptions of Involving Consumers in Health Research in Australia: A Qualitative Study.

There is growing recognition internationally of the importance of involving consumers, patients, and the public in research. This is being driven by political mandates for policies, funding, and governance that demand genuine and meaningful engagement with consumers. There are many potential benefits to involving consumers in research, including an increased relevance to patient needs, improved quality and outcomes, and enhanced public confidence in research. However, the current literature highlights that efforts to incorporate their contributions are often tokenistic and there is a limited understanding of the psychological factors that can impact researcher attitudes, intentions, and behaviours when working with consumers in research. To address this gap, this study conducted 25 semi-structured interviews with health researchers in Australia using the qualitative case study method. The study aim was to explore the underlying influences on researcher behaviour when involving consumers in health research. The results identified several factors that influence researchers' behaviour, including better quality research, emotional connection and the humanisation of research, and a shift in research culture and expectations as major drivers. However, beliefs that consumers would hinder research and must be protected from risks, paternalism, and a lack of researcher skills and resources were identified as major barriers. This article presents a theory of planned behaviour for consumer involvement in the health research model. The model offers a valuable tool for policymakers and practitioners to understand the factors that influence researcher behaviours. It can also serve as a framework for future research in this area.

Integrating consumer perspectives into a large-scale health literacy audit of health information materials: learnings and next steps.

BACKGROUND: Health information is less effective when it does not meet the health literacy needs of its consumers. For health organisations, assessing the appropriateness of their existing health information resources is a key step to addressing this issue. This study describes novel methods for a consumer-centred large-scale health literacy audit of existing resources and reflects on opportunities to further refine the method. METHODS: This audit focused on resources developed by NPS MedicineWise, an Australian not-for-profit that promotes safe and informed use of medicines. The audit comprised 4 stages, with consumers engaged at each stage: 1) Select a sample of resources for assessment; 2) Assess the sample using subjective (Patient Education Materials Assessment Tool) and objective (Sydney Health Literacy Lab Health Literacy Editor) assessment tools; 3) Review audit findings through workshops and identify priority areas for future work; 4) Reflect and gather feedback on the audit process via interviews. RESULTS: Of 147 resources, consumers selected 49 for detailed assessment that covered a range of health topics, health literacy skills, and formats, and which had varied web usage. Overall, 42 resources (85.7%) were assessed as easy to understand, but only 26 (53.1%) as easy to act on. A typical text was written at a grade 12 reading level and used the passive voice 6 times. About one in five words in a typical text were considered complex (19%). Workshops identified three key areas for action: make resources easier to understand and act on; consider the readers' context, needs, and skills; and improve inclusiveness and representation. Interviews with workshop attendees highlighted that audit methods could be further improved by setting clear expectations about the project rationale, objectives, and consumer roles; providing consumers with a simpler subjective health literacy assessment tool, and addressing issues related to diverse representation. CONCLUSIONS: This audit yielded valuable consumer-centred priorities for improving organisational health literacy with regards to updating a large existing database of health information resources. We also identified important opportunities to further refine the process. Study findings provide valuable practical insights that can inform organisational health actions for the upcoming Australian National Health Literacy Strategy.