Engaging longitudinal cohort participants in a research priority setting process for the Raine Study.

The project was designed by the Core Project team, consisting of the Raine Study Participant Engagement staff and Project Advisor Anne McKenzie AM 1 (AM), utilising the modified JLA methodology. Active Gen1 and Gen2 participants of the Raine Study were invited to participate in the priority setting process, being the primary cohort within the Raine Study for over three decades. Gen1 and Gen2 participants who held roles within the RSCAC and Steering Group were also eligible to participate in the priority setting process. Gen3 and Gen2B participants were not included, as these cohorts were in their recruitment phase at the time of project initiation. Non-Raine Study participants were excluded from the study, such as researchers, clinicians, and other members of the public. The project was established with three key stages: (i) conduct an online survey to identify areas of interest amongst participants of the Raine Study, (ii) thematic analysis of survey responses to identify themes and provide a foundation for further discussion and prioritisation, followed by a (iii) consensus workshop to reach a collaborative agreement on the Top 10 priorities for future research (Figs.  1 and 2 ). Fig. 1 Project methodology Project methodology Approval was obtained from the University of Western Australia Human Research Ethics Committee (2024_ET000371). The outcome of JLA PSPs is to produce a list of Top 10 research priorities [ 5 ]. Traditionally, JLA PSP projects are used within research centred around a singular focus or condition [ 5 ]. However, as the Raine Study does not have a distinct focus on just one area of health research but, instead, explores the multifaceted aspects of overall health and wellbeing across the life course, a modified method was required. This modified method was first developed at The University of Western Australia in 2016 [ 7 ]. These modified versions of the JLA PSP have since been used across Australian priority setting projects [ 8 – 10 ]. Additionally, following discussions with the RSCAC and core project team, it was agreed that researchers, clinicians, and other members of the public would not be included in the priority-setting process. The rationale driving this decision was that by involving only participants, the outcomes would reflect their genuine, unbiased priorities, ensuring that participants had full autonomy in identifying priorities without external influence. Similar modifications have been made in previous cohort study PSPs, where exclusion of researchers and clinicians was intentional to ensure the priorities reflected the genuine lived experiences and concerns of the community [ 11 ]. These adaptions highlight the flexibility of the JLA methodology in its ability to be tailored for participant-led research. The JLA PSPs methodology highlights the need for the formation of a proactive steering group to oversee the project [ 5 ]. RSCAC members were invited to join the project’s steering group, as an existing group of cohort representatives, with prior knowledge of the project’s aims through their involvement in initial project discussions. The final steering group consisted of seven participants, who provided their perspectives on the research design process, data collection methods, and communication strategies to advertise the project to the wider participant cohort, through a participant lens. An online survey was developed by the core project team, with the aim to ascertain priority topics, themes and ideas that Gen1 and Gen2 participants want the Raine Study to research in the future. To avoid overloading the participants involved in the Steering Group, the survey was initially developed by the Core Project team, under guidance from the Project Advisor. The Steering Group were then invited to review the survey and accompanying information sheet, providing their feedback before each were finalised and distributed to the wider cohort. The final survey presented the following two questions: What area of health and wellbeing would you like the Raine Study to research in the future? What issues do you believe should be prioritised to benefit the community as a whole? These issues may differ from those mentioned in the previous question. What area of health and wellbeing would you like the Raine Study to research in the future? What issues do you believe should be prioritised to benefit the community as a whole? These issues may differ from those mentioned in the previous question. The link to the Qualtrics survey was sent to all Gen1 and Gen2 participants with an email address on record at the time (3,540 participants) via email newsletter, and was open for capturing responses for five weeks from 02 Aug 2024 to 08 Sept 2024. Initially, the survey was open for four weeks, but was extended by a week to allow for additional responses. Communications through social media networks (Facebook, Instagram) were also used to promote the survey. When accessing the survey, participants were directed to an information page, detailing the project format, outcomes, and how the survey data will be used to form a Top 10 priority list. The page also informed participants that participating in the survey was voluntary, and that completion of the survey constituted their consent to take part in the project. In addition to the main survey questions, respondents were offered the opportunity to provide additional comments, as well as register their interest in attending the consensus workshop. Expressions of interest were directed to a separate Qualtrics form, to maintain anonymity in their survey responses. Respondents to this form were notified, through a similar information page, that data supplied would be used to create an expression of interest list for the consensus workshop, and submission of the form provided consent for this data collection and further contact from the Raine Study team. This project used Thematic Analysis (TA) to identify recurring themes from the participant survey. TA is a systematic method of qualitative data analysis, used for the identification and interpretation of key features within data [ 12 ]. TA follows a structured process of coding data, generating and identifying themes, and validating and finalising themes [ 13 ]. These themes reflect patterns of meaning, built through the identification and grouping of codes [ 12 ]. Analysis of survey responses utilised an inductive approach, in which the data were coded without a preexisting analytical framework [ 13 ]. This approach ensures that the identified codes and themes are directly associated with the analysed data [ 13 ]. The responses to both survey questions were coded separately, by MD, who recorded the analysis within NVivo Qualitative Software (Version 14) [ 14 ]. MD joined the project without prior involvement in the Raine Study, which brought a fresh and unbiased perspective to the thematic analysis. Drawing on her background in business analysis, she applied a structured and analytical lens to the thematic coding process, which complemented the participant-focused insights brought by other team members. Coding began with a semantic approach, then progressed to interpretation when identifying patterns for theming by MD and SA [ 13 ]. SA’s involvement with participants through various roles within the Raine Study gave her a deep understanding of their needs, preferences, and communication styles, providing a differing perspective to MD in data analysis. Upon completion of coding, identified themes were validated by the core project team to ensure that these themes accurately reflected the identified codes within participant responses. After finalisation of themes, coded responses were used to develop subthemes. The full list of themes and subthemes were then sent to the steering group for review. The consensus workshop was initially scheduled for October 5, 2024, but was rescheduled due to the extension of the survey close date. The workshop was held five weeks after the survey close date on October 12, 2024. Registered participants were sent the list of themes and subthemes prior to the workshop, allowing them to review and prepare any comments for discussion, and were notified that they would be offered an honorarium for their attendance. The consensus workshop followed an abridged method of the JLA PSP workshop processes. JLA PSP workshops utilise a Nominal Group Technique (NGT) in the prioritisation process, an established decision-making approach that allows for group discussion, voting, and ranking of priorities [ 5 , 15 ]. This process encourages participation amongst all participants and prevents individuals from dominating decision making [ 5 ]. Fig. 2 Consensus process Consensus process Prior to the workshop commencing, participants were provided with an additional information sheet and consent form. The workshop was facilitated by an experienced PSP facilitator and project advisor (AM), with support from a co-facilitator (BF). The workshop consisted of small group activities, led by small group facilitators who were Raine Study staff members (ED, KGK, MD, SA, ST), and whole group discussions, led by the workshop facilitator. Each small group was assigned a distinct colour: blue, green, orange, red, and yellow. At the start of the workshop, participants were provided with an overview of the Project, as well as an explanation of the workshop process. The facilitator briefed the participants about their expected behaviours, highlighting the importance of working together to reach a consensus, and being respectful of the opinions of others. Participants were also reassured that, although the aim of the day was to establish a ‘Top 10’ list of priorities, the remaining themes would still be reported. The first small group discussion enabled participants to review the list of themes and express individual perspectives on their priorities, resulting in a top and bottom three ranking of themes [ 5 ]. Small groups then discussed ranking the remaining themes, the potential to collapse similar themes into a single theme, and suggest any additional topics that they felt should be included in the priority ranking. The next session involved a whole group discussion, where each small group’s top themes, suggestions for combined themes, and new theme suggestions were presented to the whole group. The workshop facilitator invited all to speak for or against the proposed theme changes, and moderated the discussion until group consensus was reached on all revisions. An updated list of themes was then provided to each small group on cards, presented in an aggregate order based on the ranking of themes within the first session. Small group facilitators led the discussion for ranking all themes within this session. The final session was another whole group discussion, to vote on the final rankings of research priorities. Small group rankings were entered into a spreadsheet, creating an aggregate ranking to present to the whole group. The combined ranking of the themes was presented to participants using A4 cards. The entire group was encouraged to engage in open, constructive discussion to reach agreement on the final prioritisation of themes. When any participant proposed a change to the ranking, they were asked to explain their reasoning. This prompted others to respond, either in support of or against the proposed adjustment, fostering a balanced exchange of perspectives. A vote was then taken to determine whether the change should be accepted, ensuring transparency and collective agreement. The workshop facilitator chaired the discussion and ranking of all themes, resulting in the Top 10 research priorities, as determined by group consensus [ 5 ]. After completion of the workshop, participants were asked to complete an evaluation form to provide feedback on the consensus process. This evaluation form included five Likert-scale statements, as well as open-ended questions.

The open and click rates for the initial and follow-up email distributions of the survey are displayed within Table  1 . Table 1 Survey open and click rates Email distribution Distribution date Open rate Click rate First Distribution 02/08/2024 56.67% 8.62% Second Distribution 20/08/2024 55.72% 7.56% Third Distribution 7/09/2024 53.81% 9.64% Average 55.37% 8.61% Survey open and click rates The survey received 535 responses (15.11% response rate) during its open period. As survey responses were anonymous, demographic data, including the Generation of respondents, was not captured. Survey responses were thematically analysed, resulting in 1,225 unique codes, grouped into 44 overarching themes. The list of themes and subthemes was reviewed and validated by the project advisory team. In order to provide a concise list for the consensus workshop, under guidance from the Project Advisor and JLA knowledge expert, it was decided to narrow the list to the top 23 themes based on number of references within the data. To avoid creating bias when presenting the 23 themes to the participants, they were arranged in alphabetical order (Table  2 ). Table 2 Top themes and subthemes from thematic analysis Theme Subthemes Ageing & Longevity • Ageing and mobility • Age-related health issues and diseases • Healthy ageing and protective lifestyle factors Cardiovascular • Cardiovascular and heart health • Heart disease and its risk and protective factors • High cholesterol • Hypertension • Risk factors for cardiovascular disease development Cancer • Types of cancer:  • Bowel cancer  • Breast cancer  • Colon cancer  • Pancreatic cancer  • Skin Cancer • Genetic influence on susceptibility, development, and treatment of cancers • Lifestyle risk factors for cancer development • Early screening and testing • Childhood cancer Chronic Conditions • Factors such as lifestyle, genetics, environment etc., contributing to the development of chronic conditions and long-term illness • Chronic pain conditions and pain management • Chronic fatigue and its effects on health and well-being Cognitive Behaviour • Behavioural issues and disorders, their causes, and interventions • Brain health and function • Cognitive health and function • Impact of technology and screen use on cognitive development • Memory and memory loss • Prevalence and intervention of behavioural disorders Communicable Disease • Impact of communicable disease on public health • Effects of various viruses on health and potential cures for communicable diseases • Examination of COVID-19 vaccinations on overall health, mental health, social interactions, mortality rates and specific populations such as children and young adults • Impact of mandatory COVID-19 vaccinations on children and young adults, including potential long-term effects Diabetes • Type I diabetes in childhood • Gestational diabetes • The relationship between insulin and diabetes • Caring for individuals diagnosed with diabetes Diet • Formula use, processed foods and additives, and sugar intake in child diet • Effects of low or zero carbohydrate diet on health • Effects of sugar intake on health • Influence of diet on overall health • Processed foods and their impact on health Environmental Health • The impact of pesticides on health • Built environment, city design and transportation • The effect of industrial agriculture on health and well-being • Microplastics and impacts on health Gastrointestinal Health • The influence of gut microbiome health on brain function • Understanding Inflammatory Bowel Disease • Understanding Irritable Bowel Syndrome • Impact of diet on gastrointestinal health • Gastrointestinal health as a key factor in overall well-being, with a focus on healthy GI development and function General Health • Health education and its influence on physical health • Preventative health interventions • The Influence of lifestyle factors on general health Genetics • Hereditary conditions and the corresponding health issues • The effect of the Methylenetetrahydrofolate reductase (MTHFR) Gene mutation on health and wellbeing • Genetic links to body weight and its impact on health • The connection between genetics and cancer • The relationship between genetics and fertility Impacts of Social Media • Examine the impact of social media on mental health, including loneliness, anxiety, and emotional well-being • Addressing issues of social media addiction and obsession • Implications of social media on family relationships and daily interactions • The effects of social media use on children’s development, and mental and physical health Impacts of Technology • Implications of high screen time on health and cognitive development • Impact of mobile devices on mental health, identity, and overall well-being, including issues of addiction • Investigate the effects of artificial intelligence on cognitive learning and childhood development, considering its integration into daily activity and education • Concerns relating to technology dependency and its impact on social connections and feelings of loneliness, especially in early childhood Mental Health • Anxiety prevalence, risk factors, and treatment options • Environmental and lifestyle risk and protective factors for depression • Mental health support through awareness, resources, and health services • Technological influences on the development of mental health issues • The effects of stress on health, and interventions to manage stress • The social and environmental risk and protective factors of child and adolescent mental health Neurodivergence • Attention Deficit Hyperactivity Disorder [ADHD] and prevalence in adults • Autism Spectrum Disorder • Autism Spectrum Disorder in women • Early screening and diagnosis for neurodivergence, such as ADHD and Autism Spectrum Disorder • Genetic and environmental factors contributing to ADHD development • Increasing rates of neurodivergence Nutrition • Nutrients and their effects on health, including the importance of vitamins and nutrition across different stages of life to promote healthy eating • Focus on essential minerals i.e., calcium and iron, the levels, influences and significance in nutrition • Discussion of calcium scores in childhood and baseline calcium levels, highlighting the importance of maintaining these levels to prevent hypercalcemia and hypocalcaemia Obesity • The prevalence of obesity and potential interventions • The increasing rates of childhood obesity Physical Activity • Impacts and benefits of exercise and fitness on overall health • Sport and fitness on lifestyle • Effect of exercise on mental health • Amount of physical activity required for a healthy living Pregnancy • The different stages of pregnancy, childbirth processes, and common interventions • Rise in caesarean sections and their implications • Understanding the risks and complications such as premature birth, stillbirth, miscarriage, and pregnancy loss, along with factors contributing to these outcomes, including genetic risks and parental vocations Reproductive Health • Age and health-related factors contributing to fertility issues amongst men and women • Causes of endometriosis and its effects on fertility • Contributing factors to birth rate reduction and the decision on not having children • Female reproductive health throughout the lifecycle • The onset of menopause and prolonged menopausal symptoms Socioeconomic Effects on Health • Impact of the cost of living on well-being and overall health • The impact of remote work on health • The influence of homelessness on overall health • Financial challenges, saving skills, and their effects on mental health Women’s Health • The impact of hormonal issues and imbalances on women’s health • The connection between female anatomy and women's health Top themes and subthemes from thematic analysis • Ageing and mobility • Age-related health issues and diseases • Healthy ageing and protective lifestyle factors • Cardiovascular and heart health • Heart disease and its risk and protective factors • High cholesterol • Hypertension • Risk factors for cardiovascular disease development • Types of cancer: • Bowel cancer • Breast cancer • Colon cancer • Pancreatic cancer • Skin Cancer • Genetic influence on susceptibility, development, and treatment of cancers • Lifestyle risk factors for cancer development • Early screening and testing • Childhood cancer • Factors such as lifestyle, genetics, environment etc., contributing to the development of chronic conditions and long-term illness • Chronic pain conditions and pain management • Chronic fatigue and its effects on health and well-being • Behavioural issues and disorders, their causes, and interventions • Brain health and function • Cognitive health and function • Impact of technology and screen use on cognitive development • Memory and memory loss • Prevalence and intervention of behavioural disorders • Impact of communicable disease on public health • Effects of various viruses on health and potential cures for communicable diseases • Examination of COVID-19 vaccinations on overall health, mental health, social interactions, mortality rates and specific populations such as children and young adults • Impact of mandatory COVID-19 vaccinations on children and young adults, including potential long-term effects • Type I diabetes in childhood • Gestational diabetes • The relationship between insulin and diabetes • Caring for individuals diagnosed with diabetes • Formula use, processed foods and additives, and sugar intake in child diet • Effects of low or zero carbohydrate diet on health • Effects of sugar intake on health • Influence of diet on overall health • Processed foods and their impact on health • The impact of pesticides on health • Built environment, city design and transportation • The effect of industrial agriculture on health and well-being • Microplastics and impacts on health • The influence of gut microbiome health on brain function • Understanding Inflammatory Bowel Disease • Understanding Irritable Bowel Syndrome • Impact of diet on gastrointestinal health • Gastrointestinal health as a key factor in overall well-being, with a focus on healthy GI development and function • Health education and its influence on physical health • Preventative health interventions • The Influence of lifestyle factors on general health • Hereditary conditions and the corresponding health issues • The effect of the Methylenetetrahydrofolate reductase (MTHFR) Gene mutation on health and wellbeing • Genetic links to body weight and its impact on health • The connection between genetics and cancer • The relationship between genetics and fertility • Examine the impact of social media on mental health, including loneliness, anxiety, and emotional well-being • Addressing issues of social media addiction and obsession • Implications of social media on family relationships and daily interactions • The effects of social media use on children’s development, and mental and physical health • Implications of high screen time on health and cognitive development • Impact of mobile devices on mental health, identity, and overall well-being, including issues of addiction • Investigate the effects of artificial intelligence on cognitive learning and childhood development, considering its integration into daily activity and education • Concerns relating to technology dependency and its impact on social connections and feelings of loneliness, especially in early childhood • Anxiety prevalence, risk factors, and treatment options • Environmental and lifestyle risk and protective factors for depression • Mental health support through awareness, resources, and health services • Technological influences on the development of mental health issues • The effects of stress on health, and interventions to manage stress • The social and environmental risk and protective factors of child and adolescent mental health • Attention Deficit Hyperactivity Disorder [ADHD] and prevalence in adults • Autism Spectrum Disorder • Autism Spectrum Disorder in women • Early screening and diagnosis for neurodivergence, such as ADHD and Autism Spectrum Disorder • Genetic and environmental factors contributing to ADHD development • Increasing rates of neurodivergence • Nutrients and their effects on health, including the importance of vitamins and nutrition across different stages of life to promote healthy eating • Focus on essential minerals i.e., calcium and iron, the levels, influences and significance in nutrition • Discussion of calcium scores in childhood and baseline calcium levels, highlighting the importance of maintaining these levels to prevent hypercalcemia and hypocalcaemia • The prevalence of obesity and potential interventions • The increasing rates of childhood obesity • Impacts and benefits of exercise and fitness on overall health • Sport and fitness on lifestyle • Effect of exercise on mental health • Amount of physical activity required for a healthy living • The different stages of pregnancy, childbirth processes, and common interventions • Rise in caesarean sections and their implications • Understanding the risks and complications such as premature birth, stillbirth, miscarriage, and pregnancy loss, along with factors contributing to these outcomes, including genetic risks and parental vocations • Age and health-related factors contributing to fertility issues amongst men and women • Causes of endometriosis and its effects on fertility • Contributing factors to birth rate reduction and the decision on not having children • Female reproductive health throughout the lifecycle • The onset of menopause and prolonged menopausal symptoms • Impact of the cost of living on well-being and overall health • The impact of remote work on health • The influence of homelessness on overall health • Financial challenges, saving skills, and their effects on mental health • The impact of hormonal issues and imbalances on women’s health • The connection between female anatomy and women's health These themes and their subsequent subthemes were then presented at the consensus workshop for further discussion and prioritisation. From the 58 participants (Gen1 n  = 36, Gen2 n  = 22) who submitted expressions of interest for attending the consensus workshop, a total of 25 participants registered and confirmed attendance (Gen1 n  = 14, Gen2 n  = 11) (Table  3 ). Table 3 Number of workshop participant expressions of interest, registration, and attendance Generation Gender Total Female Male Gen 1 Gen2 Total Gen 1 Gen2 Total Gen1 Gen2 Total Expressions of Interest 23 (39.7%) 17 (29.3%) 40 (70%) 13 (22.4%) 5 (8.6%) 18 (31%) 36 (62.1%) 22 (37.9%) 58 Registration 8 (32%) 7 (28%) 15 (60%) 6 (24%) 4 (16%) 10 (40%) 14 (56%) 11 (44%) 25 Attendees 9 (39.1%) 7 (30.4%) 16 (69.6%) 5 (21.7%) 2 (8.7%) 7 (30.4%) 14 (60.9%) 9 (39.1%) 23 Note. No workshop participants identified as non-binary Number of workshop participant expressions of interest, registration, and attendance 8 (32%) 7 (28%) 6 (24%) 4 (16%) 10 (40%) 14 (56%) 11 (44%) 9 (39.1%) 7 (30.4%) 16 (69.6%) 5 (21.7%) 2 (8.7%) 7 (30.4%) 14 (60.9%) 9 (39.1%) Note. No workshop participants identified as non-binary On the day of the consensus workshop, three registered attendees did not attend, all of whom were male (Gen1 n  = 1, Gen2 n  = 2), whilst an additional Gen1 female arrived with her husband. This change resulted in a total of 23 attendees. Of these, 61% were Gen1 participants ( n  = 14), with a mean age of 66.29 ± 3.65 (59–74) years, and 39% were Gen2 participants ( n  = 9), with a mean age of 33.44 ± 0.73 (32–34) years. The majority of attendees were female ( n  = 16), accounting for 70% of consensus workshop attendees. The group discussions of the top 23 themes led to suggestions for new themes, and similar themes for combining. The following amendments to the list of themes and subthemes resulted from the consensus process. A new theme of “Generational Impact” was added, with its subsequent subthemes of “Impact of parenting”, and “Generational trauma”. The themes “Impact of Social Media” and “Impact of Technology” were combined, along with their respective subthemes. The themes of “Diet” and “Nutrition” were also combined into a single theme. The theme of “General Health” was renamed to “Health Education and Interventions” to provide a better description of its subthemes. The theme of “Women’s Health” was renamed to “Sex Specific Health”, to ensure inclusivity and representation of the health conditions and experiences across different sexes and genders. The final Top 10 research priorities identified through consensus were: Mental Health, Health Education and Intervention, Reproductive Health, Cognitive Behaviour, Generational Impact, Neurodivergence, Sex-Specific Health, Environmental Health, Gastrointestinal Health, and the Socioeconomic Effects on Health. These are presented in Table  4 , along with an additional 12 priorities that were also identified. Table 4 Ranking of themes within small group prioritisation and whole group consensus Themes Small Group Prioritisation Whole Group Consensus Theme Description Blue Group Ranking Green Group Ranking Orange Group Ranking Red Group Ranking Yellow Group Ranking Aggregate Ranking Final Ranking Mental Health Participants overwhelmingly prioritised mental health as the top research focus, emphasising its critical impact on overall well-being. 9 2 8 2 3 1 1 Health Education and Intervention Equipping individuals and communities with knowledge and strategies to prevent and manage health challenges effectively. 2 9 6 3 5 2 2 Reproductive Health Covering all aspects of the reproductive system, including fertility, endometriosis, and birth rate reduction, whilst addressing reproductive health needs across the lifecycle. 1 4 10 13 4 3 3 Cognitive Behaviour Encompassing brain and cognitive health, the impact of technology and screen use on cognitive development, and the prevalence and intervention of behavioural disorders. 4 6 12 11 6 4 4 Generational Impact Past generations within a family lineage, whose experiences, behaviours, and environments may influence the health, behaviour, and well-being of current and future generations. 5 8 9 9 9 5 5 Neurodivergence The variation in brain function and cognition, encompassing conditions such as autism, ADHD, and other neurological differences that influence thinking, learning, and behaviour. 12 5 3 19 2 6 6 Sex Specific Health Encompassing the unique health experiences, conditions, and medical needs of different sexes and genders, including biological, hormonal, and physiological differences, as well as the impact of gender-specific healthcare access and treatment. 3 15 2 10 12 7 7 Environmental Health The interactions between the environment and human health, including the effects of built environments and pollutants on overall well-being and disease prevention. 17 14 7 4 1 8 8 Gastrointestinal Health The function and well-being of the digestive system, including the microbiome, gut disorders, diet, and the connection between gut health and overall physical and mental well-being. 8 21 1 12 11 10 9 Socioeconomic Effects on Health The impact of factors such as income, education, employment, housing, and social inequality on physical and mental health, and overall well-being. 16 3 15 6 15 13 10 Impact of Social Media and Technology The impacts of social media, technology, and artificial intelligence on mental health, child development, cognitive function, and social relationships, highlighting issues such as addiction, screen time, and emotional well-being. 10 1 21 5 10 9 11 Chronic Conditions The impact of factors such as lifestyle, genetics, environment etc., contributing to the development of chronic conditions and long-term illness and management of these conditions. 13 16 5 7 17 14 12 Diet and Nutrition Focuses on how nutrients like vitamins, calcium, and iron impact health across life stages. It includes discussions on sugar intake, processed foods, formula use, and diet trends (e.g. low-carb diets), highlighting their influence on overall health and development. 15 10 14 1 14 11 13 Genetics Explores how genetic factors can influence overall health, body weight, cancer risk, fertility, and overall well-being. 7 12 4 16 16 12 14 Pregnancy Examines the stages of pregnancy, childbirth processes, and common interventions. Exploring the risks and complications associated with pregnancy, while considering contributing factors such as genetic predispositions and parental occupational influences. 20 13 11 14 8 15 15 Cancer Explores cancer from multiple perspectives, including the genetic factors that influence susceptibility, development, and treatment. Also considers lifestyle-related risk factors that may contribute to cancer and early screening and testing. 11 17 18 17 7 16 16 Ageing and Longevity Covers age-related health issues, mobility, and ways to support healthy ageing through protective lifestyle factors that promote wellbeing. 6 20 16 8 21 17 17 Communicable Disease The impact of communicable diseases on public health, with a focus on viruses, vaccination effects, and long-term outcomes in young people. 18 7 13 15 22 18 18 Obesity Observing the increasing prevalence of overweight and obesity, especially in children, requiring urgent interventions to prevent long-term health issues. 19 19 20 20 13 19 19 Physical Activity Understanding how exercise and fitness improve overall health by enhancing physical and mental well-being, supporting an active lifestyle, and promoting the necessary amount of activity for healthy living. 22 11 22 18 20 20 20 Diabetes Concerns over Type 1 diabetes in childhood, gestational diabetes, and the relationship between insulin and diabetes. Exploring careful management and care for individuals diagnosed with these conditions. 14 22 17 22 19 21 21 Cardiovascular Managing risk factors like heart disease, high cholesterol, hypertension, and other factors that contribute to the development of cardiovascular disease. 21 18 19 21 18 22 22 Ranking of themes within small group prioritisation and whole group consensus Of the 23 workshop attendees, 22 (95.7%) completed the post-workshop evaluation survey, expressing overall satisfaction with the workshop outcomes. Of these respondents, 16 (72.7%) believed that the workshop met their expectations. Regarding the explanation of the priority setting process, 16 participants (72.7%) believed that the process had been explained clearly, the same number of participants stating that the presentations provided adequate information. In addition, 19 participants (83.63%) felt that their questions had been answered completely throughout the session. Many participants noted that they felt the discussion of opinions within whole group discussions had a positive impact on the overall workshop process, and group consensus of top priorities. However, they also voiced that the ranking of priorities proved to be a difficult task, and that a longer workshop may have improved the overall process. Bringing the two Generations together provided a range of perspectives in group discussions, and although attendees recognised the benefit of having this diversity within the workshop, they noted that the differing opinions across Generations and genders made small group discussions challenging at times. Personal priorities influenced by their own life experiences were strongly held by some participants, however by the end of the workshop all participants were able to navigate their differences to reach consensus. In total, 20 participants (90.9%) felt that they had an opportunity to put forward their ideas and priorities for research within the workshop. However, one participant stated that they had no opportunity to put forward their ideas within the session. This same participant stated that they found both gender and age differences amongst participants to cause difficulties within the workshop.

The Raine Study, established in Perth, Western Australia in 1989, is one of the first and longest running pregnancy cohorts globally [ 1 ]. It is one of the most extensive multigenerational and longitudinal research studies, encompassing pregnancy, childhood and adulthood, ever undertaken. The Raine Study includes Gen1 (the cohort of parents who registered their pregnancy) and Gen2 (children born through those pregnancies between 1989 and 1992), who have been engaged in regular health assessments throughout the last three decades. Recently, the study has expanded to include Gen3 (children of Gen2 participants) as well as Gen2B (the non-Raine Study biological parents of Gen3 participants). The Raine Study collects information on the interactions of genetics, environment, behaviour, and developmental outcomes to advance our understanding of human health and wellbeing. Participant engagement and involvement is integral to the Raine Study’s research, operations, and communications. To facilitate this, the Raine Study utilises various methods for participant involvement that are embedded across all aspects of the study’s core functions. The value of participant engagement in research is well established, and although participant input in research has increased over the years, it is still not considered standard practice in Australian health and medical research [ 2 ]. The Raine Study has established measures for participant engagement, which include a Raine Study Community Advisory Committee (RSCAC), and cohort member inclusion in the Unincorporated Joint Venture (UJV) Board, the Scientific Review Committee, and the All-Staff Forum. Additionally, Raine Study researchers regularly consult with cohort members on their proposed research applications, where participants provide feedback and support. However, this consultation usually commences after the research ideas have already been developed, and not at the conceptual stage. Despite existing cohort involvement methods, participants have never been actively invited to share their preferred priorities for future research. In the context of the Raine Study, Patient and Public Involvement (PPI) focuses on participants contributing to research design at any stage from its initiation [ 3 ]. PPI offers substantial benefits to research projects, enhancing relevance as well as impact. However, PPI is commonly implemented through invitation for feedback on pre-determined research ideas, rather than co-development of study designs [ 4 ]. Establishing participant priorities to determine areas of focus for future research ensures that study direction is relevant to our cohort population [ 4 ], a concept discussed frequently within previous RSCAC meetings, whose members are advocates for the larger Raine Study cohort and advise on operational, ethical and research activities of the study. From these discussions, the Participant Priority Setting Project, referred to as “The Project” henceforth, was established to engage participants in a structured priority setting process, enabling them to express what they deem to be important future research areas for the Raine Study. The project utilised a modified methodological framework from the James Lind Alliance (JLA). The JLA is a non-profit initiative that brings patients, carers, and clinicians together in Priority Setting Partnerships (PSPs). The JLA PSP framework supports PPI through the identification and prioritisation of important areas of research [ 5 ]. JLA PSPs successfully contribute to the identification of research questions, allowing those involved to identify and prioritise areas of interest [ 6 ]. This process aims to advise researchers and funding bodies about participant-informed priorities, ensuring meaningful research is conducted [ 5 ].

The Participant Priority Setting Project was the first time that participants of the Raine Study were invited to set priorities for the overall future research direction of the Study. This project underscores the Raine Study’s commitment to participant involvement in shaping the direction of Raine Study research. Whilst the outcome of this project focuses on a finalised list of Top 10 priorities, as decided by consensus workshop participants, the remaining 12 priorities remain important. The list of priorities developed throughout this process provides valuable insight to researchers and funding bodies and has the potential to shape future research.

This project successfully established a list of future research priorities, identified and set by the participants of the Raine Study. Consumer driven research is now prioritised by many national research funding bodies [ 16 ]. This project has ensured that the Raine Study aligns with this priority, providing researchers using Raine Study data with the information they need to inform their research plans. By disseminating these priorities to relevant funders and researchers, the Raine Study aims to foster collaborative research programs and initiate themed calls for research proposals [ 17 , 18 ]. The priority of Mental Health had an overwhelming majority of mentions amongst survey responses and was further established as the number one priority during the consensus workshop. Poor mental health is widespread globally, with one in eight people estimated to be living with a mental health condition worldwide [ 19 ]. Nearly half of all Australian adults will experience a mental disorder within their life course, and the prevalence of mental disorders amongst Western Australian adults is comparable to national statistics [ 20 , 21 ]. Mental health is an existing priority area within the research landscape. Public funding for mental health research has increased within the past decade; however, calls for additional investment in this priority area are ongoing [ 22 ]. The establishment of mental health as a priority area amongst Raine Study participants underscores the imperative to enhance funding and research opportunities for this important area of health. The Raine Study has already committed to mental health research, through follow-up questionnaires relating to mental health, as well as the development of the Mental Health and Cognition Special Interest Group [SIG] 2 . Historically, many studies using Raine Study data have focused on the influences on mental health outcomes. These include other health behaviours, as well as the influence of parental mental health problems on their offspring [ 20 , 23 , 24 , 25 ]. Two other priorities fall within the expertise of the Mental Health and Cognition SIG, these priorities being Cognitive Behaviour (Priority Number 4), and Neurodivergence (Priority Number 6). Raine Study data have been used to identify causes of behavioural issues and developmental disorders [ 26 – 28 ]. There has been less research aimed specifically at neurodivergence, with existing literature primarily reviewing methodology for assessing ADHD [ 29 ]. The prioritisation of these research areas provides an opportunity to expand on the research utilising existing and new Raine Study data. As a broad priority area looking at lifestyle factors, education, and preventative health interventions, there are a number of existing SIGs involved with the identified priority of Health Education and Intervention (Priority Number 2), highlighting the existing utilisation of Raine Study data to support this priority. Although the Raine Study is an observational study, and health interventions are not within the scope of the study’s design, collected data have been used to identify the influence of lifestyle factors on health outcomes. A recent study by Barden et al. used Raine Study data to identify how factors such as obesity, smoking, and alcohol consumption impact cardiometabolic disease risk through their influence on inflammation resolution [ 30 ]. Additionally, Raine Study data have been used to identify areas for intervention in childhood and adolescence to improve health outcomes in later life, such as TV watching behaviour in childhood and adolescence and its impact on artery function at 28 years of age [ 31 ]. Reproductive health has already been recognised as an important research area within the Raine Study, further supported by its prioritisation within the Top 10 (Priority 3). The worldwide fertility rate is in a steady decline, with rates falling below the generational population replacement level in over half of all countries [ 32 ]. Australian rates are comparable to this global decline, with 1.5 babies born per woman in Australia in 2023 [ 33 ]. Additionally, adverse adult reproductive function has been associated with negative long-term health outcomes for both sexes, such as metabolic syndrome, cardiovascular disease, and mental health disorders [ 34 – 37 ]. There are limited long-term data on the impact of early life events on adult reproductive function outside of the Raine Study, with Raine Study researchers focusing on these influences for both males and females. Raine Study data have been used to identify how pre-natal exposures to endocrine disrupting agents has an influence on reproductive function in adulthood [ 38 – 40 ]. In 2024, the Raine Study launched its Gen2 reproductive health assessment, running in tandem with the current Generations follow-up. This study utilises questionnaires, blood samples, semen samples, and pelvic ultrasounds to assess the reproductive health of Gen2 participants. The reproductive health assessment aims to investigate early life factors influencing reproductive function and general health at age 33, an age that fits within the identified range of initial fertility decline [ 41 ]. Alongside reproductive health, the priority of sex-specific health (Priority 7) falls within the interest of the Hormonal and Reproduction SIG. This priority, first introduced as Women’s Health, was expanded to address the unique health conditions and experiences of both sexes. Raine Study data have been used to identify sex-dependent associations between prenatal exposures and health outcomes, as well as sex-specific health outcomes throughout the life course [ 42 – 44 ]. The Environmental Health priority (Priority 8) is an area of research development within the Raine Study, and fits within the current Environmental and Perinatal Exposures SIG. Raine Study data have been used to explore the effect of exposomes on foetal development, as well as on health and human physiology throughout all life stages [ 45 – 48 ]. The priority’s subtheme of Microplastics has a strong research interest within the Raine Study, particularly amongst endocrine studies [ 49 , 50 ]. Raine Study data have been used to identify a link between prenatal exposure to microplastics and increased likelihood of asthma development [ 50 ]. This area of research interest is increasing worldwide, and the prioritisation of this topic by Raine Study participants highlights the general public’s growing understanding of its importance. The other priority that considers external factors that influence the life course is Socioeconomic Effects on Health (Priority 10). Tying in with Priority 1, Raine Study data have been used to identify the influence of social inequalities on mental health trajectories in children [ 51 ]. This research emphasises that identified priorities should be viewed as interconnected rather than separate initiatives. Although a newer area of interest, Raine Study data have been used to identify the impacts of parenting and family dynamics on the development of emotional and behavioural problems amongst children [ 26 ]. However, Generational Impact (Priority 5) has not been identified as an area of priority research until now. The multigenerational nature of the Raine Study provides a prime opportunity for conducting research in this area, providing insight into the intergenerational influence of genetics, environmental and social factors. Further data relating to this area will be available upon completion of the Generations follow-up. The area of gastrointestinal health (Priority 9) currently fits within both the Liver and Gastrointestinal, and Diet SIGs. This priority area seeks to understand gastrointestinal issues, influences on gastrointestinal health, and the influence that gastrointestinal health has on other areas of health and wellbeing. Raine Study data has recently been used to identify an association between altered gut microbiology and non-alcoholic fatty liver disease in younger adults [ 52 ]. The response rate for the Participant Priority Setting survey was an expected percentage based on previous survey engagement with participants. In December 2021, the Raine Study launched a key questionnaire as part of the Generations Assessment Follow-up. Data from this questionnaire was used to support the internal operations of the Raine Study, and was not published externally. The questionnaire was distributed to 3,378 participants and achieved an open rate of 49.02% (1,656 opens) with a click rate of 13.41%. A follow-up distribution on March 28, 2022, saw a reduced open rate of 30.3%. Ultimately, 345 individuals completed the survey, representing a 10.2% completion rate. In comparison, the Participant Priority Setting survey recorded a higher average open rate of 55.37% and an average click rate of 8.61%. In total, 535 participants completed this survey, with a 15.11% completion rate, resulting in a greater response rate than the 2021 questionnaire. There was a significant difference in numbers between the registered expressions of interest, and final attendees of the consensus workshop. The original workshop date advertised in the expression of interest was rescheduled to the following week. This change may have contributed to the lower attendance numbers, as the revised date may not have been suitable for some participants. The Raine Study has previously observed that the number of people registered for an event often exceeds the actual attendance, as many participants express interest but ultimately do not attend. This trend indicates that the initial number of preliminary nominations does not reliably predict the number of attendees. Workshop and small group facilitators played a key role in encouraging participants to contribute during the consensus workshop. Positive rapport between researchers and participants has been found to motivate engagement within face-to-face interview environments [ 53 ]. Having Raine Study staff serve as small group facilitators may have created a welcoming and familiar environment for participants, with the existing rapport allowing participants to feel more confident in expressing their thoughts, sharing feedback, and contributing meaningfully to discussions. The staff’s deep understanding of the study’s context added value to the conversations and helped ensure participants felt heard and respected, even in times of disagreement. Additionally, facilitators played a significant role in summarising key arguments to ensure all participants had clarity and shared understanding. For instance, when a suggestion was made to change the priority order of themes, the facilitator guided the discussion by asking for supporting and opposing viewpoints, which helped the group weigh the pros and cons before voting. This structured yet inclusive approach ensured that disagreements were not only heard but thoughtfully resolved. A strength of this priority setting process was using a modified JLA PSP framework, adapted for Australian audiences in 2016. The JLA PSP is an established framework for consumer priority setting initiatives worldwide, and provides an important foundation for including public and participant involvement in research [ 54 ]. This process was supported by knowledge experts throughout both project development and workshop facilitation, to successfully establish a ranked list of priorities for future research. Whilst the Raine Study has, since its inception, valued cohort involvement and consulted with participants about research proposals, this was the first time that Raine Study participants have been included in a formal, overall priority setting process. The ongoing work within the participant engagement portfolio has helped foster stronger, more trusting relationships between the Raine Study and its participants. This connection not only enhances participants’ willingness to engage but also ensures they feel heard and valued. As a result, the project benefits from more meaningful input, greater participation, and richer data, ultimately leading to stronger and more impactful outcomes [ 18 ]. Participant involvement was focussed on Gen1 and Gen2 participants of the Raine Study. Although these participants make up the majority of the cohort, and are the original members of the study, their views may not be reflective of the newer cohort members within Gen3 and Gen2B. During the project proposal and development, recruitment of Gen3 and Gen2B participants was in its initial stages. As such, they were not included in this study. We understand the importance of their perspectives, and believe it would be beneficial to include these participants in future priority setting initiatives. The number of survey responses represented just 15% of the cohort population. Due to the project timeline and scheduling of the consensus workshop, the survey had a hard close deadline. We acknowledge that a higher response rate would be preferential, and better represent the cohort, however, gathering additional responses was not possible within the timeframe. In addition, the anonymous nature of the survey did not provide an overview of how many respondents were Gen1 or Gen2 participants. This limits the ability to determine if the voices of each Generation were equally represented within survey responses. The demographics of the consensus workshop may also be seen as a limitation, as they do not represent the larger Raine Study cohort (Fig.  3 ). Female participants made up 70% of workshop participants, highlighting an underrepresentation of males within the workshop. However, when split between the Generations, the representation of Gen1 participants split by gender was comparative to the percentage of active Gen1 participants. However, we acknowledge that Gen2 male participants were underrepresented in the consensus workshop, and there was no representation of non-binary Raine Study participants. Fig. 3 Gender demographics of consensus workshop participants vs. active raine study participants Gender demographics of consensus workshop participants vs. active raine study participants With the establishment of the Top 10 priorities, the Raine Study must now work to ensure that these priorities are supported within future research initiatives. The Raine Study plans to utilise multiple approaches aimed at engaging its participants and stakeholders, such as UJV Partners, Funding Partners and Scientific Committees, as well as its wider research community, with these priorities. Promotion of the priorities will use multiple communication channels, such as social media, newsletter campaigns, website content, and events. These communications aim to introduce the priorities to the Raine Study community, as well as to the extended public and research communities, to foster discussions. Engaging researchers is of critical importance to ensure that they embrace the priorities set by the Raine Study participants. Resources will be developed to explain the significance of each priority, and forums for discussion will be opened to allow for idea generation and collaboration. Efforts will also be made to integrate these priorities into grant proposals and research agendas, to ensure they are considered in future research funding and planning.

Below is the link to the electronic supplementary material. Supplementary Material 1 Supplementary Material 1