'Building bridges': reflections and recommendations for co-producing health research.

BACKGROUND: Co-produced research is when all stakeholders, including experts by experience and researchers, work together to conceptualise, design, deliver and disseminate research to enhance understanding and knowledge. This type of participatory inquiry is being increasingly used across health research; however, it continues to be a complex area to navigate given existing institutional structures. MAIN BODY: We collaborated across three independent co-produced research studies to share insights, reflections, and knowledge of our work in the fields of HIV, mental health, and disability research. We co-designed and delivered a three-hour online workshop at a conference to share these reflections using the metaphor of 'building bridges' to describe our co-production journey. We generated key principles of co-production from our different experiences working in each individual research project as well as together across the three projects. Our principles are to: (1) be kind, have fun and learn from each other; (2) share power (as much as you can with people); (3) connect with people you know and don't know; (4) remain connected; and (5) use clear and simple language. CONCLUSION: We recommend that co-produced research needs additional funding, resource, and flexibility to remain impactful and ethical. Co-produced research teams need to be mindful of traditional power structures and ensure that the process is transparent, fair, and ethical. Addressing equality, diversity, and inclusion of traditionally underrepresented groups in research is essential as are the skills, expertise, and experiences of all members of the co-production team.

Co-produced research occurs when a range of people, including researchers and people with lived experience of a topic work together on all stages of a piece of research, from design to publication, to improve understanding of a topic. This methodology has become increasingly popular in the field of health research, however ­ it can be difficult to undertake because of how health institutions are structured. As a team, we examined three co-produced studies (focusing on HIV, mental health, and disability research) to share our insights and reflections. We then shared these reflections through a co-designed online workshop at a conference. We used the metaphor of 'building bridges' to describe our teamwork. From our experiences on these studies, we came up with five key suggestions for co-production in research: (1) be kind, have fun and learn from each other; (2) share power as much as possible with everyone; (3) connect with people you know and those you don't; (4) stay connected; (5) use clear and simple language. To achieve ethical and impactful co-produced research, we suggest that it needs more funding, resources, and flexibility. Teams who are conducting co-produced research must be fair and clear about how they do so, and ensure that everyone, especially groups who are often unheard, get a chance to be part of research so that everyone's skills and experiences are equally considered.

Participatory evaluation of the process of co-producing resources for the public on data science and artificial intelligence.

BACKGROUND: The growth of data science and artificial intelligence offers novel healthcare applications and research possibilities. Patients should be able to make informed choices about using healthcare. Therefore, they must be provided with lay information about new technology. A team consisting of academic researchers, health professionals, and public contributors collaboratively co-designed and co-developed the new resource offering that information. In this paper, we evaluate this novel approach to co-production. METHODS: We used participatory evaluation to understand the co-production process. This consisted of creative approaches and reflexivity over three stages. Firstly, everyone had an opportunity to participate in three online training sessions. The first one focused on the aims of evaluation, the second on photovoice (that included practical training on using photos as metaphors), and the third on being reflective (recognising one's biases and perspectives during analysis). During the second stage, using photovoice, everyone took photos that symbolised their experiences of being involved in the project. This included a session with a professional photographer. At the last stage, we met in person and, using data collected from photovoice, built the mandala as a representation of a joint experience of the project. This stage was supported by professional artists who summarised the mandala in the illustration. RESULTS: The mandala is the artistic presentation of the findings from the evaluation. It is a shared journey between everyone involved. We divided it into six related layers. Starting from inside layers present the following experiences (1) public contributors had space to build confidence in a new topic, (2) relationships between individuals and within the project, (3) working remotely during the COVID-19 pandemic, (4) motivation that influenced people to become involved in this particular piece of work, (5) requirements that co-production needs to be inclusive and accessible to everyone, (6) expectations towards data science and artificial intelligence that researchers should follow to establish public support. CONCLUSIONS: The participatory evaluation suggests that co-production around data science and artificial intelligence can be a meaningful process that is co-owned by everyone involved.

Modern technology offers new treatment options for patients and novel avenues of research. However, there is limited available information in easily understandable language for the public explaining how technology relates to them and could influence their healthcare. The researchers, healthcare professionals and public members worked together collaboratively to address this problem by creating new materials for the public. Our paper explores that project through creative methods. Firstly, everyone involved was offered an opportunity to attend training sessions. Then, people took photos and described them to illustrate to others what is their experience of working together. Finally, we all met to use included photos as building blocks to present a shared experience in the project. Afterwards, the professional artist included it as one circular illustration with six interlinked layers. These layers present everyone's experiences (from inside) (1) is about the opportunity to build confidence in a new topic, (2) relationships with others, (3) working remotely during the pandemic, (4) motivation that influenced people to become involved in this particular piece of work, (5) expectation that the project needs be inclusive and accessible, (6) ethical principles that researchers using new technology should follow. We showed that it is possible for researchers, healthcare professionals and members of the public to feel joint ownership of the project and that working together can be meaningful to everyone.

Sexual dimorphism in the relationship between brain complexity, volume and general intelligence (g): a cross-cohort study.

Changes in brain morphology have been reported during development, ageing and in relation to different pathologies. Brain morphology described by the shape complexity of gyri and sulci can be captured and quantified using fractal dimension (FD). This measure of brain structural complexity, as well as brain volume, are associated with intelligence, but less is known about the sexual dimorphism of these relationships. In this paper, sex differences in the relationship between brain structural complexity and general intelligence (g) in two diverse geographic and cultural populations (UK and Indian) are investigated. 3D T1-weighted magnetic resonance imaging (MRI) data and a battery of cognitive tests were acquired from participants belonging to three different cohorts: Mysore Parthenon Cohort (MPC); Aberdeen Children of the 1950s (ACONF) and UK Biobank. We computed MRI derived structural brain complexity and g estimated from a battery of cognitive tests for each group. Brain complexity and volume were both positively corelated with intelligence, with the correlations being significant in women but not always in men. This relationship is seen across populations of differing ages and geographical locations and improves understanding of neurobiological sex-differences.

In the physical to digital transition with friends - a story of performing inclusive research together no matter what life throws at you.

BACKGROUND: As part of 'The Hub' project at Wellcome Collection, a team of eight co-researchers with learning disabilities alongside academics created an online survey to challenge public understanding of learning disabilities. Using creative and arts-based methods, co-researchers remotely co-analysed the survey results amid Covid-19 lockdown challenges. Here, we explore our unexpected 'transition' journey from the physical 'Hub' to the digital space. METHODS: We organised 20 sessions at 'The Hub' and used audio/video/photo recordings to 'capture' key moments. With the lockdown, we ensured that every co-researcher had access to and support for digital technologies. Throughout 2020, we organized 28 Zoom meetings involving all co-researchers. In June, Lilly and Sue conducted Zoom interviews with the co-research team to reflect on our 'transition' journey. In this creative video-form submission accompanied by an accessible report, Lilly puts together a story of how we transitioned and felt throughout this process. FINDINGS: We identify that trust and the social bonds established at 'The Hub' are the key components of our transition to the digital environment. There is the tension between longing for in-person contact and trying to make the most out of the situation to maintain these relationships. At the heart of this is the motivation to 'change the world' and the strive for social justice. Having time and opportunity to improve, and co-researchers' steady growth in confidence, are equally important. CONCLUSIONS: The determination for maintaining friendships among co-researchers and the motivation to 'change the world' overcome Covid-19 related challenges in continuing co-research. SUMMARY: [Table: see text].

Supporting Remote Survey Data Analysis by Co-researchers with Learning Disabilities through Inclusive and Creative Practices and Data Science Approaches.

Through a process of robust co-design, we created a bespoke accessible survey platform to explore the role of co-researchers with learning disabilities (LDs) in research design and analysis. A team of co-researchers used this system to create an online survey to challenge public understanding of LDs [3]. Here, we describe and evaluate the process of remotely co-analyzing the survey data across 30 meetings in a research team consisting of academics and non-academics with diverse abilities amid new COVID-19 lockdown challenges. Based on survey data with >1,500 responses, we first co-analyzed demographics using graphs and art & design approaches. Next, co-researchers co-analyzed the output of machine learning-based structural topic modelling (STM) applied to open-ended text responses. We derived an efficient five-steps STM co-analysis process for creative, inclusive, and critical engagement of data by co-researchers. Co-researchers observed that by trying to understand and impact public opinion, their own perspectives also changed.

"We have been magnified for years - Now you are under the microscope!": Co-researchers with Learning Disabilities Created an Online Survey to Challenge Public Understanding of Learning Disabilities.

Public attitudes towards learning disabilities (LDs) are generally reported as positive, inclusive and empathetic. However, these findings do not reflect the lived experiences of people with LDs. To shed light on this disparity, a team of co-researchers with LDs created the first online survey to challenge public understanding of LDs, asking questions in ways that are important to them and represent how they see themselves. Here, we describe and evaluate the process of creating an accessible survey platform and an online survey in a research team consisting of academic and non-academic professionals with and without LDs or autism. Through this inclusive research process, the co-designed survey met the expectations of the co-researchers and was well-received by the initial survey respondents. We reflect on the co-researchers' perspectives following the study completion, and consider the difficulties and advantages we encountered deploying such approaches and their potential implications on future survey data analysis.

Life-course determinants of cognitive reserve (CR) in cognitive aging and dementia - a systematic literature review.

OBJECTIVES: The concept of cognitive reserve (CR) is defined as a moderator, which allows an individual to preserve cognition despite underlying brain pathology. There is no consensus of what potentially modifiable CR determinants are of greatest importance. The aim of this review was to identify life-course factors which protect older individuals from expressing cognitive decline despite the presence of brain pathology. METHOD: A systematic review search was performed in MEDLINE (1946-06/09/13), EMBASE (1947-06/09/13), and PsycheInfo (1967-06/09/13). We included studies examining CR in the context of the four commonest subtypes of dementia, mild cognitive impairment or healthy aging. Studies which combined measurement of underlying dementia-related neuropathology, cognitive function, and factors providing CR in a single model were accepted. We performed a qualitative synthesis of the results. RESULTS: Thirty-four studies out of 9229 screened records met our inclusion criteria and were therefore quality assessed and data extracted. Variation in CR definition made comparison across studies difficult. One hundred and forty-four out of 156 models examined education and occupation: overall, 58% of eligible models classified education and 60% occupation as a CR determinant, with 12% and 44% of those, respectively, being of high quality. Within healthy population suitable to inform preventative interventions, there was consistent evidence for education having a protective effect on general cognition in the face of multiple brain burden measures, while occupation presented inconclusive results within cognitive groups. CONCLUSIONS: Further research on modifiable determinants of CR beyond education/occupation including early-life factors and consensus on CR definition are warranted.

Klotho, APOEε4, cognitive ability, brain size, atrophy, and survival: a study in the Aberdeen Birth Cohort of 1936.

A single copy of klotho allele KL-VS is associated with longevity, better health, increased cognition, and bigger regional brain volume. However, its longitudinal effects on cognition and brain volumes, both global and regional, in late life are unclear. In this study we show that, relative to noncarriers, KL-VS heterozygotes had (1) shorter survival; (2) smaller white matter volumes; (3) slower cognitive decline; and (4) greater right frontal lobe volumes. The KL-VS heterozygote survival and white matter volume disadvantages were unexpected. A possible explanation for these results in the context of the literature is a potential interaction between the environment and/or age of the participants, leading to a heterozygote disadvantage. The longitudinal cognitive trajectories indicate that heterozygotes would have an advantage in very late life. Collectively these results suggest that the genotype-survival advantage of the KL-VS allele is age-dependent and possibly mediated through differential cognition and brain volume.

Late-life deficits in cognitive, physical and emotional functions, childhood intelligence and occupational profile: a life-course examination of the Aberdeen 1936 Birth Cohort (ABC1936).

OBJECTIVES: the 'triad of impairment' phenomenon describes the co-occurrence of age-related cognitive, emotional and physical functioning deficits. We investigated how occupational profile and childhood intelligence contribute to the triad of impairment in late life. METHODS: we analysed data of a subsample of the Aberdeen Birth Cohort of 1936 (n = 346). Data were collected on participants' childhood intelligence, late-life cognitive ability, physical functioning, depressive symptoms and main lifetime occupation. We summarised the various occupational and impairment measures into two latent variables, 'occupational profile' and the 'triad of impairment'. We used a series of data reduction approaches and structural equation models (SEMs) of increasing complexity to test both the validity of the models and to understand causal relationships between the life-course risks for the triad of impairment. RESULTS: occupational profile had a significant effect on the triad of impairment independent of childhood intelligence. Childhood intelligence was the predominant influence on the triad of impairment and exerted its effect directly and indirectly via its influence on occupation. The direct effect of childhood intelligence exceeded the independent influence of the occupational profile on impairment by a factor of 1.7-1.8 and was greater by a factor of ∼4 from the indirect pathway (via occupation). CONCLUSIONS: childhood intelligence was the predominant influence on the triad of impairment in late life, independently of the occupational profile. Efforts to reduce impairment in older adults should be informed by a life-course approach with special attention to the early-life environment.

Bone microarchitecture is impaired in adolescent amenorrheic athletes compared with eumenorrheic athletes and nonathletic controls.

CONTEXT: Bone mineral density (BMD) is lower in young amenorrheic athletes (AA) compared to eumenorrheic athletes (EA) and nonathletic controls and may contribute to fracture risk during a critical time of bone accrual. Abnormal bone microarchitecture is an independent determinant of fracture risk and has not been assessed in young athletes and nonathletes. OBJECTIVE: We hypothesized that bone microarchitecture is impaired in AA compared to EA and nonathletes despite weight-bearing exercise. DESIGN AND SETTING: We conducted this cross-sectional study at the Clinical Research Center of Massachusetts General Hospital. SUBJECTS AND OUTCOME MEASURES: We assessed BMD and bone microarchitecture in 50 subjects [16 AA, 18 EA, and 16 nonathletes (15-21 yr old)] using dual-energy x-ray absorptiometry and high-resolution peripheral quantitative computed tomography. RESULTS: Groups did not differ for chronological age, bone age, body mass index, or vitamin D levels. Lumbar BMD Z-scores were lower in AA vs. EA and nonathletes; hip and femoral neck BMD Z-scores were highest in EA. At the weight-bearing tibia, athletes had greater total area, trabecular area, and cortical perimeter than nonathletes, whereas cortical area and thickness trended lower in AA. Trabecular number was lower and trabecular separation higher in AA vs. EA and nonathletes. At the non-weight-bearing radius, trabecular density was lower in AA vs. EA and nonathletes. Later menarchal age was an important determinant of impaired microarchitecture. After controlling for covariates, subject grouping accounted for 18-24% of the variability in tibial trabecular number and separation. CONCLUSION: In addition to low BMD, AA have impaired bone microarchitecture compared with EA and nonathletes. These are the first data to show abnormal bone microarchitecture in AA.