Video Abstracts in Research.

Video abstracts can be useful in health research. A video abstract provides key messages about a research article and can increase public engagement, spark conversations, and may increase academic attention. A growing number of open source software programs make it easier to develop a video abstract. This viewpoint provides practical tips for creating a video abstract for health research.

Assessing the Outputs, Outcomes, and Impacts of Science Communication: A Quantitative Content Analysis of 128 Science Communication Projects.

Few studies have explored how science communication projects are evaluated and what impact they have. This study aims to fill this gap by analyzing the results of science communication projects carried out by academics. Drawing on the theory of change and evaluation models, possible results of science communication projects are conceptually distinguished at the levels of outputs, outcomes, and impacts. The study draws on a dataset of 128 science communication projects funded by the Swiss National Science Foundation from 2012 to 2022. Quantitative content analysis reveals few rigorous evaluation designs and a focus on reporting outputs, while outcomes and societal impacts are often neglected.

A SIMBA CoMICs Initiative to Cocreating and Disseminating Evidence-Based, Peer-Reviewed Short Videos on Social Media: Mixed Methods Prospective Study.

BACKGROUND: Social media is a powerful platform for disseminating health information, yet it is often riddled with misinformation. Further, few guidelines exist for producing reliable, peer-reviewed content. This study describes a framework for creating and disseminating evidence-based videos on polycystic ovary syndrome (PCOS) and thyroid conditions to improve health literacy and tackle misinformation. OBJECTIVE: The study aims to evaluate the creation, dissemination, and impact of evidence-based, peer-reviewed short videos on PCOS and thyroid disorders across social media. It also explores the experiences of content creators and assesses audience engagement. METHODS: This mixed methods prospective study was conducted between December 2022 and May 2023 and comprised five phases: (1) script generation, (2) video creation, (3) cross-platform publication, (4) process evaluation, and (5) impact evaluation. The SIMBA-CoMICs (Simulation via Instant Messaging for Bedside Application-Combined Medical Information Cines) initiative provides a structured process where medical concepts are simplified and converted to visually engaging videos. The initiative recruited medical students interested in making visually appealing and scientifically accurate videos for social media. The students were then guided to create video scripts based on frequently searched PCOS- and thyroid-related topics. Once experts confirmed the accuracy of the scripts, the medical students produced the videos. The videos were checked by clinical experts and experts with lived experience to ensure clarity and engagement. The SIMBA-CoMICs team then guided the students in editing these videos to fit platform requirements before posting them on TikTok, Instagram, YouTube, and Twitter. Engagement metrics were tracked over 2 months. Content creators were interviewed, and thematic analysis was performed to explore their experiences. RESULTS: The 20 videos received 718 likes, 120 shares, and 54,686 views across all platforms, with TikTok (19,458 views) and Twitter (19,678 views) being the most popular. Engagement increased significantly, with follower growth ranging from 5% on Twitter to 89% on TikTok. Thematic analysis of interviews with 8 out of 38 participants revealed 4 key themes: views on social media, advice for using social media, reasons for participating, and reflections on the project. Content creators highlighted the advantages of social media, such as large outreach (12 references), convenience (10 references), and accessibility to opportunities (7 references). Participants appreciated the nonrestrictive participation criteria, convenience (8 references), and the ability to record from home using prewritten scripts (6 references). Further recommendations to improve the content creation experience included awareness of audience demographics (9 references), sharing content on multiple platforms (5 references), and collaborating with organizations (3 references). CONCLUSIONS: This study demonstrates the effectiveness of the SIMBA CoMICs initiative in training medical students to create accurate medical information on PCOS and thyroid disorders for social media dissemination. The model offers a scalable solution to combat misinformation and improve health literacy.

Science for tomorrow's neurosurgery: insights on establishing a neurosurgery patient group focused on developing novel intra-operative imaging techniques.

BACKGROUND: Incorporating patient and public involvement (PPI) in research is crucial for ensuring the relevance and success of studies, yet it remains significantly underutilised in surgical research. MAIN BODY: This commentary presents insights from our neurosurgical research team's experience with establishing and working with a PPI group called "Science for Tomorrow's Neurosurgery" on research regarding novel intra-operative optical imaging techniques. Through collaboration with patient-focused charities, we have successfully incorporated patient perspectives into our work at each stage of the research pipeline, whilst adhering to core PPI principles, such as reciprocal relationships, co-learning, partnerships, and transparency. CONCLUSION: We highlight the specific value added to our work in terms of participant recruitment, research ethics and results dissemination.

Including patients and members of the public in medical research is really important. It helps make sure the research is useful and successful. Surprisingly, it's not used enough in surgical research. This article talks about how our team of brain surgeons and scientists worked with a group called "Science for Tomorrow's Neurosurgery" to include brain surgery patients in our research about new ways to look at the brain during surgery. We worked closely with charities that focus on helping patients with brain conditions, and we made sure to listen to what patients had to say every step of the way, from planning our research to sharing our results. We followed some important rules, like making sure everyone involved felt like they were being treated fairly, learning together, working together with different groups, and being honest and open. We found that having patients involved in the design and development really helped us find the right people to take part in our research, make sure we were doing things the right way, and share our findings in a way that made sense to everyone.

Distrust and reflexive impotence in the net zero transition: findings from a longitudinal deliberative mini-public.

Responding to climate change requires that people engage in different forms of climate citizenship. These span from individual consumption choices, to taking part in forms of collective action to steer the behaviour of governments and in the private sector. Here we analyse data from the Net Zero Diaries project to explore how attitudes to different forms of climate citizenship develop as people become more aware about the scale of societal change required to reach net zero carbon emissions by 2050. The Net Zero Diaries project was a deliberative mini-public, composed of 41 citizens broadly representative of the UK adult population, which convened over five months between 2021 and 2022 to debate the UK policies for reaching net zero emissions by 2050. We show that people identify government as the prime actor needed to drive the transition, but doubt that they will act due to a range of constraints vis-à-vis the public and private sector. This tension provides a novel explanation for why some people prioritise forms of individual and consumption focused climate citizenship, whilst also doubting the efficacy of such actions. We conclude by suggesting that efforts to drive more engaged forms of climate citizenship need to attend to underlying feelings about state efficacy, rather than focus on just how the issue of climate change is framed. Supplementary Information: The online version contains supplementary material available at 10.1007/s10584-024-03806-2.

Qualitative exploration of the lived experiences of loneliness in later life to inform technology development.

PURPOSE: Loneliness is a negative emotional state which is common in later life. The accumulative effects of loneliness have a significant impact on the physical and mental health of older adults. We aim to qualitatively explore the experiences of loneliness in later life and identify relevant behaviours and indicators which will inform novel methods of loneliness detection and intervention. METHODS: We conducted 60 semi-structured interviews with people aged 65 and over between September 2022 and August 2023. Data were analysed using a reflective thematic approach with early theme development on NVIVO software. RESULTS: Three themes were identified from the experiences of loneliness in older adults. 1) Unique responses to loneliness, including crying, increased eating or drinking and sleep difficulties, 2) Age-related losses, such as networks, roles, and abilities to engage in activities reducing over time and 3) Individual differences in overcoming loneliness, where strategies such as keeping busy and adopting a positive mindset were impacted by motivation and mood of older adults. CONCLUSION: Distinct signs and relevant factors to loneliness in later life have been identified which can be detected by future sensing technologies. Findings of this in-depth qualitative study highlight that loneliness is a subjective experience requiring a holistic and person-centred approach to detection and intervention.

Sonification of Genomic Data to Represent Genetic Load in Zoo Populations.

Maintaining a diverse gene pool is important in the captive management of zoo populations, especially in endangered species such as the pink pigeon (Nesoenas mayeri). However, due to the limited number of breeding individuals and relaxed natural selection, the loss of variation and accumulation of harmful variants is inevitable. Inbreeding results in a loss of fitness (i.e., inbreeding depression), principally because related parents are more likely to transmit a copy of the same recessive deleterious genetic variant to their offspring. Genomics-informed captive breeding can manage harmful variants by artificial selection, reducing the genetic load by avoiding the inheritance of two copies of the same harmful variant. To explain this concept in an interactive way to zoo visitors, we developed a sonification game to represent the fitness impacts of harmful variants by detuning notes in a familiar musical melody (i.e., Beethoven's Für Elise). Conceptually, zoo visitors play a game aiming to create the most optimal pink pigeon offspring in terms of inbreeding depression. They select virtual crosses between pink pigeon individuals and listen for the detuning of the melody, which represents the realised load of the resultant offspring. Here we present the sonification algorithm and the results of an online survey to see whether participants could identify the most and least optimal offspring from three potential pink pigeon offspring. Of our 98 respondents, 85 (86.7%) correctly identified the least optimal offspring, 73 (74.5%) correctly identified the most optimal, and 62 (63.3%) identified both the most and least optimal offspring using only the sonification.

How to set up and run a Bad Bugs Bookclub group.

The Bad Bugs Bookclub is a public engagement initiative that enables scientists (microbiologists) and non-scientists to discuss the role of infectious disease and microorganisms in novels of fiction. The bookclub began in 2009, but since 2020, the meetings have taken place online, enabling international membership and occasional author participation. The bookclub has been shown, through peer-reviewed publications, to have impact and value to its members. For each book (the number now exceeds 100), a reading guide (questions to provoke discussion) and a meeting report (narrative of the discussion) were produced. Previously hosted on a website, the reading guides from this rich archive and resource are now presented alongside this paper, which provides tips on how to run a similar reading group.

Community engagement in a seaside town: evaluation of Good Grief Weston festival.

Background: Festivals play an important role in improving death and grief literacy, enabling members of the public to engage with these often-sensitive topics. Good Grief Weston festival was co-designed and delivered with the community in Weston-super-Mare, a coastal town in South-West England with high levels of socioeconomic disadvantage but rich community assets. It was held in person over 8 days in May 2023. Objectives: To evaluate the reach and impact of Good Grief Weston festival and gather data to inform future festivals. Design: Mixed methods evaluation (survey and focus groups). Methods: Online and paper surveys assessing participants' characteristics and experiences were administrated during and after the festival. Survey participants who indicated their willingness to participate were invited to attend a focus group. Focus groups were recorded, transcribed and analysed using thematic analysis. Data were collected by trained community co-researchers. Results: Approximately 3000 people attended the festival. Of 204 completed surveys, 64.5% were from women, age range ⩽15 to ⩾75 years; 88.2% identified as White; 14.9% deaf, disabled/with a chronic condition; 18.9% neurodivergent; 9.0% gay, bisexual or queer. Festival participants were entertained (70.9%), inspired (68.5%), felt part of a like-minded community (54.3%), talked to someone new (49.2%), learnt about grief/bereavement (34.3%), shared or expressed experiences (30.3%) and found out about local support (19.7%). 71.3% reported that they felt more confident talking about grief after attending. Median experience rating was 5 (IQR 0; possible range 1 = poor to 5 = excellent). In free-text comments, participants expressed appreciation for the festival and described benefits in attending. Two focus groups were conducted (n = 8 participants, all women), lasting c.1.5 h. Focus groups added rich descriptions of the festival's value, and data to inform the next festival. Conclusion: Findings suggest festivals of this nature can play a central role in a public health approach.

What was the impact of Good Grief Weston festival? Why was the study done? Previous studies have shown that many people feel unsupported by their community after the death of a loved one. We designed a festival to improve knowledge and support for bereaved people. We did this study to assess how the festival affected the people who attended. What did the researchers do? The team included researchers and people and organisations from the local community. Together, we designed and ran a festival on the topic of death, grief and bereavement in Weston-super-Mare, a coastal town with areas of high deprivation. The festival took place over an eight-day period in May 2023 and included creative, interactive and educational events. The team collected feedback on attendees' experiences of the festival. We did this using online and paper feedback forms, postcards, and focus groups to collect as many opinions as possible. What did the researchers find? We found that a wide range of people attended the festival. Most people who took part in the research rated the festival as 'excellent'. They told us they learnt about grief and bereavement and found out about local support services. Attendees met new people, shared their experiences, and felt that the festival built community spirit. They also made suggestions to improve any future festivals. What do the findings mean? The findings show that in-person festivals can effectively engage the public on the topic of death, grief and bereavement. They can also help develop connections between people and organisations in communities. These connections and learning opportunities may help communities to support their members through bereavement.

Impact of NGOs' undercover videos on citizens' emotions and pro-social behaviors.

Undercover videos have become a popular tool among NGOs to influence public opinion and generate engagement for the NGO's cause. These videos are seen as a powerful and cost-effective way of bringing about social change, as they provide first-hand evidence and generate a strong emotional response among those who see them. In this paper, we empirically assess the impact of undercover videos on support for the cause. We in addition analyze whether the increased engagement among viewers is driven by the negative emotional reactions produced by the video. To do so, we design an online experiment that enables us to estimate both the total and emotion-mediated treatment effects on engagement by randomly exposing participants to an undercover video (of animal abuse) and randomly introducing a cooling-off period. Using a representative sample of the French population (N=3,310), we find that the video successfully increases actions in favor of animals (i.e., donations to NGOs and petitions), but we fail to prove that this effect is due to the presence of primary emotions induced by the video. Last, we investigate whether activists correctly anticipate their undercover videos' (emotional) impact via a prediction study involving activists (exploratory analysis). PROTOCOL REGISTRATION: This manuscript is a Stage-2 working paper of a Registered Report that received In-Principle-Acceptance from Scientific Reports on November 20th, 2023 [ Link to Stage-1 ]. The Stage-1 that received In-Principal-Acceptance can be found here: https://osf.io/8cg2d .

Engagement of patients and the public in personalised prevention in Europe using genomic information: a scoping review.

Introduction: Personalised prevention using genomic information requires active involvement from patients and the public, who should be well-informed and empowered to make healthcare decisions that reflect their personal values. We aimed to map engagement practises, and assess the extent and types of engagement methods used in the field of personalised prevention of common chronic conditions using genomic information. Methods: A scoping review on selected literature (in Medline, Embase, Scopus, Web of Science, APA PsycINFO, and IBSS) from 2015 to 2023 was performed. Articles included described practises of patient and public engagement in personalised prevention and genomics conducted in Europe focusing on cancer, cardiovascular diseases and neurodegenerative disorders. Engagement was explored based on grouping practises across the domains of care, research, education, and governance. Results: A total of 23 articles describing 23 engagement practises were selected. Analysis revealed diverse engagement levels, the majority falling into the low to medium engagement category, and showing mainly unidirectional methods of engagement, especially consultation. Most engagement activities related to cancer, and none to neurodegenerative disorders. Most publications appeared in the care domain, followed by the research domain, a combination of research and care, and a combination of governance and education. Conclusion: These results suggest that most practises to engage patients and public in personalised prevention using genomic information appear to have lower levels of engagement. Elaborating on and implementing practises that engage and empower patients and the public at all levels of the engagement spectrum and for all chronic diseases is needed, fostering a more inclusive and participatory approach to personalised prevention.

Current experience and future potential of facilitating access to digital NHS primary care services in England: the Di-Facto mixed-methods study.

Background: Current National Health Service policy in England encourages enhanced digital access in primary care service provision. In this study, we investigate 'digital facilitation' - that range of processes, procedures and personnel which seeks to support National Health Service primary care patients in their uptake and use of online services. Objectives: Identify, characterise and explore the potential benefits and challenges associated with different models of digital facilitation currently in use in general practice which are aimed at improving patient access to online services in general practice in England. Use the resulting intelligence to design a framework for future evaluations of the effectiveness and cost effectiveness of such interventions. Explore how patients with mental health conditions experience digital facilitation and gauge their need for this support. Design: Observational mixed-methods study (literature review, surveys, ethnographic observation and interviews); formal synthesis of findings. Setting: General practice in four regions of England. Participants: Practice survey: 156 staff. Patient survey: 3051 patients. Mental health survey: 756 patients. General practitioner patient survey: 3 million responders. Ethnographic case-studies: 8 practices; interviews with 36 staff, 33 patients and 10 patients with a mental health condition. Stakeholder interviews: 19 participants. Intervention: Digital facilitation as undertaken in general practice. Main outcome measures: Patient and practice staff reported use of, and views of, digital facilitation. Data sources: Surveys, qualitative research; national General Practitioner Patient Survey (2019-22). Review methods: Scoping-review methodology applied to academic and grey literature published 2015-20. Results: While we did find examples of digital facilitation in routine practice, these often involved using passive or reactive modes of support. The context of COVID, and the necessary acceleration (at that time) of the move to a digital-first model of primary care, shaped the way digital facilitation was delivered. There was lack of clarity over where the responsibility for facilitation efforts lay; it was viewed as the responsibility of 'others'. Patients living with mental health conditions had similar needs and experiences regarding digital facilitation to other patients. Limitations: The context of the COVID pandemic placed limitations on the project. Fewer practices responded to the practice survey than anticipated; reconfiguration of general practices to support COVID measures was a key consideration during non-participant observation with social distancing and other measures still in place during fieldwork. Conclusions: Digital facilitation, while not a widely recognised concept, is important in supporting the move to a National Health Service with enhanced digital opportunities and enhanced digital access. General practice staff are allocating resources to provide such efforts in general practices in England. The establishment of clear lines of responsibility, the development of digital tools and platforms that work for patients and practice staff, and investment in staff time and training are needed if digital facilitation is to support the intended digital revolution. Future work: We did not find one single dominant or preferred model of digital facilitation which might reasonably be considered to form the basis of an intervention to be tested. Rather, there is a need to co-develop such an intervention with patients, general practice staff and relevant policy experts. We outline a framework for a future evaluation of such an intervention. Study registration: This study is registered as ResearchRegistry6523 (www.researchregistry.com/browse-the-registry#home/?view_2_search=Di-Facto&view_2_page=1) and PROSPERO CRD42020189019 (www.crd.york.ac.uk/prospero/display_record.php?RecordID=189019). Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR128268) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 32. See the NIHR Funding and Awards website for further award information.

Online services are common in the National Health Service. This research looked at 'digital facilitation' in general practices. Digital facilitation is about supporting National Health Service patients in their use of online services. We aimed to understand how much digital facilitation is being used by general practices. We also looked at how digital facilitation happens and if it affects the number of people using online services. We looked at previous research to help us understand what approaches have been used to support patients to use online services. We used surveys to ask staff at general practices what they were already doing, and to ask patients about their experiences. We observed digital facilitation in general practices and spoke to patients and staff to help us understand the benefits and challenges of different approaches. We combined findings from the three stages outlined above to identify key aspects of digital facilitation. All stages of our research included discussions with the project's patient advisory group. We found that digital facilitation is seen as important and has many forms. Most general practices are using passive and reactive types of facilitation. An example of passive facilitation, initiated by the service but not involving direct inter-personal interaction, is the use of text messaging relating to ordering of repeat prescriptions online. An example of reactive facilitation is providing a response to a patient-initiated query regarding online access. There is clear scope to develop a more proactive approach to facilitation that actively engages patients. Our research highlights a lack of clarity over who is responsible for digital facilitation. Different people (patients, staff, policy-makers) often think that the responsibility lies with others. Investment in digital facilitation is needed. Tools and platforms for digital facilitation that meet patients' and general practices' needs should be developed.

Think Human: exploring the exhibition of ergonomics to enhance education and engagement: establishing the CIEHF 75th anniversary exhibition.

The field of ergonomics and human factors (E/HF) has an urgent need for increased uptake of specialists to meet the growing demands of the sector and related industries employing ergonomists. In the absence of E/HF being part of the school curriculum, one way of achieving this is through public engagement activities. Specialists in E/HF are motivated by understanding people and interactions, inherent qualities in outreach and engagement, so we are well placed to practice what we preach by understanding our own users, the consumers of our science. In this paper, we present a curriculum map and museum exhibition model as part of ongoing work to develop a public exhibition, called 'Think Human', hosted at the Museum of Making in Derby, England, from September 2024, as part of ongoing work in timely celebration of the 75th anniversary of the UK's Chartered Institute of Ergonomics and Human Factors (CIEHF).

We present a framework for public engagement with ergonomics, exemplified through the development of a museum exhibition which draws on a model of user experience. With 14­18 year-old students being a key target audience, we map elements of the school curriculum onto the core ergonomics knowledge areas.

Public Engagement in Health Policy-Making for Older Adults: A Systematic Search and Scoping Review.

INTRODUCTION: As the world's population ages, there has been increasing attention to developing health policies to support older adults. Engaging older adults in policy-making is one way to ensure that policy decisions align with their needs and priorities. However, ageist stereotypes often underestimate older adults' ability to participate in such initiatives. This scoping review aims to describe the characteristics and impacts of public engagement initiatives designed to help inform health policy-making for older adults. METHODS: A systematic search of peer-reviewed and grey literature (English only) describing public engagement initiatives in health policy-making for older adults was conducted using six electronic databases, Google and the Participedia website. No geographical, methodological or time restrictions were applied to the search. Eligibility criteria were purposefully broad to capture a wide array of relevant engagement initiatives. The outcomes of interest included participants, engagement methods and reported impacts. RESULTS: This review included 38 papers. The majority of public engagement initiatives were funded or initiated by governments or government agencies as a formal activity to address policy issues, compared to initiatives without a clear link to a specific policy-making process (e.g., research projects). While most initiatives engaged older adults as target participants, there was limited reporting on efforts to achieve participant diversity. Consultation-type engagement activities were most prevalent, compared to deliberative and collaborative approaches. Impacts of public engagement were frequently reported without formal evaluations. Notably, a few articles reported negative impacts of such initiatives. CONCLUSION: This review describes how public engagement practices have been conducted to help inform health policy-making for older adults and the documented impacts. The findings can assist policymakers, government staff, researchers and seniors' advocates in supporting the design and execution of public engagement initiatives in this policy sector. PATIENT OR PUBLIC CONTRIBUTION: Older adult partners from the McMaster University Collaborative for Health and Aging provided strategic advice throughout the key phases of this review, including developing a review protocol, data charting and synthesis and interpreting and presenting the review findings. This collaborative partnership was an essential aspect of this review, enhancing its relevance and meaningfulness for older adults.

Public participation in healthcare students' education: An umbrella review.

BACKGROUND: An often-hidden element in healthcare students' education is the pedagogy of public involvement, yet public participation can result in deep learning for students with positive impacts on the public who participate. OBJECTIVE: This article aimed to synthesize published literature reviews that described the impact of public participation in healthcare students' education. SEARCH STRATEGY: We searched MEDLINE, EMBASE, ERIC, PsychINFO, CINAHL, PubMed, JBI Database of Systematic Reviews and Implementation Reports, the Cochrane Database of Systematic Reviews, Database of Abstracts of Reviews of Effects and the PROSPERO register for literature reviews on public participation in healthcare students' education. INCLUSION CRITERIA: Reviews published in the last 10 years were included if they described patient or public participation in healthcare students' education and reported the impacts on students, the public, curricula or healthcare systems. DATA EXTRACTION AND SYNTHESIS: Data were extracted using a predesigned data extraction form and narratively synthesized. MAIN RESULTS: Twenty reviews met our inclusion criteria reporting on outcomes related to students, the public, curriculum and future professional practice. DISCUSSION AND CONCLUSION: Our findings raise awareness of the benefits and challenges of public participation in healthcare students' education and may inform future research exploring how public participation can best be utilized in higher education. PATIENT OR PUBLIC CONTRIBUTION: This review was inspired by conversations with public healthcare consumers who saw value in public participation in healthcare students' education. Studies included involved public participants, providing a deeper understanding of the impacts of public participation in healthcare students' education.

Perspectives of researchers and clinicians on patient and public involvement (PPI) in preclinical spinal cord research: An interview study.

INTRODUCTION: Patient and public involvement (PPI) in research is an embedded practice in clinical research, however, its role in preclinical or laboratory-based research is less well established and presents specific challenges. This study aimed to explore the perspectives of two key stakeholder groups, preclinical researchers and clinicians on PPI in preclinical research, using spinal cord research as a case study. METHODS: Semi-structured interviews were conducted online with 11 clinicians and 11 preclinical researchers all working in the area of spinal cord injury (SCI). Interviews were transcribed verbatim and analysed thematically. FINDINGS: Nine themes were developed through analysis. Participants' perspectives included that people living with SCI had a right to be involved, that PPI can improve the relevance of preclinical research, and that PPI can positively impact the experiences of researchers. They identified the distance between lab-based research and the daily experiences of living with SCI to be a barrier and proactive management of accessibility and the motivated and networked SCI community as key facilitators. To develop strong partnerships, participants suggested setting clear expectations, ensuring good communication, and demonstrating respect for the time of PPI contributors involved in the research. CONCLUSIONS: While traditionally PPI has been more commonly associated with clinical research, participants identified several potential benefits of PPI in preclinical spinal cord research that have applicability to preclinical researchers more broadly. Preclinical spinal researchers should explore how to include PPI in their work. PATIENT OR PUBLIC CONTRIBUTION: This study was conducted as part of a broader project aiming to develop an evidence base for preclinical PPI that draws on a 5-year preclinical research programme focused on the development of advanced biomaterials for spinal cord repair as a case study. A PPI Advisory Panel comprising seriously injured rugby players, clinicians, preclinical researchers, and PPI facilitators collaborated as co-authors on the conceptualisation, design of the interview protocol, data analysis and writing of this manuscript.

Public attitudes towards personal health data sharing in long-term epidemiological research: a Citizen Science approach in the KORA study.

BACKGROUND: Loss to follow-up in long-term epidemiological studies is well-known and often substantial. Consequently, there is a risk of bias to the results. The motivation to take part in an epidemiological study can change over time, but the ways to minimize loss to follow-up are not well studied. The Citizen Science approach offers researchers to engage in direct discussions with study participants and to integrate their opinions and requirements into cohort management. METHODS: Guided group discussions were conducted with study participants from the KORA cohort in the Augsburg Region in Germany, established 40 years ago, as well as a group of independently selected citizens. The aim was to look at the relevant aspects of health studies with a focus on long-term participation. A two-sided questionnaire was developed subsequently in a co-creation process and presented to 500 KORA participants and 2,400 employees of the research facility Helmholtz Munich. RESULTS: The discussions revealed that altruistic motivations, (i.e. supporting research and public health), personal benefits (i.e. a health check-up during a study examination), data protection, and information about research results in layman's terms were crucial to ensure interest and long-term study participation. The results of the questionnaire confirmed these aspects and showed that exclusively digital information channels may be an obstacle for older and less educated people. Thus, paper-based media such as newsletters are still important. CONCLUSIONS: The findings shed light on cohort management and long-term engagement with study participants. A long-term health study needs to benefit public and individual health; the institution needs to be trustworthy; and the results and their impact need to be disseminated in widely understandable terms and by the right means of communication back to the participants.

Levers and obstacles for implementing public engagement practices in electricity grid development.

The scale of change required through the development of new energy infrastructure throughout Europe is vast. The societal dimensions of the energy transition are increasingly recognised as centrally important and approaches to infrastructure development which seek to incorporate such considerations are warranted. EirGrid - Ireland's national electricity transmission operator - through their own historical context, have undergone a journey to develop new strategies for citizen and community engagement with relation to energy grid developments. Here, we reflect upon this journey, situating it within their previous failures and the national context. This process of reflective practice seeks to provide findings for other organisations internationally undertaking a journey towards establishing new engagement practices. The establishment of such practices is critical for enabling deeper societal engagement on the energy transition. A research gap exists in relation to the organisational development of new public engagement practices within institutions tasked with developing infrastructure associated with the energy transition. This creates a challenge whereby ever-increasing calls for public engagement are made, but no lessons exist with relation to how such new practices can be embedded within an organisational strategy. We contribute to this space through answering the research question: what are the key levers and barriers for organisation change towards new forms of public engagement in infrastructure delivery? The reflections outlined through this paper have been provided by individuals in different positions across the organisation. The paper develops key findings which add to the literature in relation to levers and obstacles for implementing public engagement and associated factors.

Identifying health and healthcare priorities in rural areas: A concept mapping study informed by consumers, health professionals and researchers.

BACKGROUND: It is vital that health service delivery and health interventions address patients' needs or preferences, are relevant for practice and can be implemented. Involving those who will use or deliver healthcare in priority-setting can lead to health service delivery and research that is more meaningful and impactful. This is particularly crucial in rural communities, where limited resources and disparities in healthcare and health outcomes are often more pronounced. The aim of this study was to determine the health and healthcare priorities in rural communities using a region-wide community engagement approach. METHODS: This multi-methods study was conducted in five rural communities in the Grampians region, Western Victoria, Australia. It involved six concept mapping steps: (1) preparation, (2) generation (brainstorming statements and identifying rating criteria), (3) structuring statements (sorting and rating statements), (4) representation of statements, (5) interpretation of the concept map and (6) utilization. Community forums, surveys and stakeholder consultations with community members and health professionals were used in Step 2. An innovative online group concept mapping platform, involving consumers, health professionals and researchers was used in Step 3. RESULTS: Overall, 117 community members and 70 health professionals identified 400 health and healthcare issues. Six stakeholder consultation sessions (with 16 community members and 16 health professionals) identified three key values for prioritizing health issues: equal access for equal need, effectiveness and impact (number of people affected). Actionable priorities for healthcare delivery were largely related to access issues, such as the challenges navigating the healthcare system, particularly for people with mental health issues; the lack of sufficient general practitioners and other health providers; the high travel costs; and poor internet coverage often impacting technology-based interventions for people in rural areas. CONCLUSIONS: This study identified actionable health and healthcare priorities from the perspective of healthcare service users and providers in rural communities in Western Victoria. Issues related to access, such as the inequities in healthcare costs, the perceived lack of quality and availability of services, particularly in mental health and disability, were identified as priorities. These insights can guide future research, policy-making and resource allocation efforts to improve healthcare access, quality and equity in rural communities.