Trends in COSI responses associated with age and degree of hearing loss.

OBJECTIVE: To investigate the relationships between age, gender, hearing loss and hearing asymmetry with reported hearing difficulties and perceived benefit from hearing aids. DESIGN: A retrospective service evaluation of patients' COSI responses. STUDY SAMPLE: A non-sampled population (n = 995) attending audiology over two months. RESULTS: Clear trends were observed between hearing difficulties, age and hearing loss. A direct logistic regression model suggested that increasing age was the predominant cause of the most common hearing problems. Gender and hearing asymmetry had no significant effect on the difficulties reported. Hearing aids were effective for the most commonly reported problems. There were no significant associations between hearing aid benefit and age or degree of hearing loss. Patients with a mild hearing loss perceived at least equal benefit from hearing aids compared to those with greater degrees of loss. CONCLUSIONS: The study demonstrated an effect of age on reported hearing problems over and above that expected due to peripheral hearing impairment, which may be a sign of wider auditory system decline. Elderly patients form the majority of the audiology patient population and their treatment requires more complex consideration than is suggested solely by the audiogram, irrespective of degree of hearing loss.

Usability and value of a digital learning resource in nursing education across European countries: a cross-sectional exploration.

BACKGROUND: Higher education is responsible for providing education that meets international benchmarks relevant to the needs of the international community. Due to the increase of digital tools in higher education, the possibility of sharing learning resources across nations has expanded. In the current project, a Norwegian university invited universities in Spain and the United Kingdom to adapt and translate e-learning resources originally developed for Norwegian nursing students for use within their respective Bachelor in Nursing programmes. AIM: The aim of the current study was to gain insights into the usability and value for learning of e-compendiums shared and implemented across three European universities. METHODS: The study adopted a descriptive cross-sectional design and included nursing students from the University of Nottingham, Valencia Catholic University, and the University of Stavanger. Data were collected in Autumn 2017 through a questionnaire adapted from the validated "Centre for Excellence in Teaching and Learning Reusable Learning Object evaluation questionnaire" The questionnaire consisted of 19 items that included two aspects: e-compendiums' value for learning and e-compendiums' usability. The different study sites were compared using a binary logistic regression analysis. Subgroups of students were compared based on their gender and age. RESULTS: A total of 480 nursing students participated in the study. The e -compendiums were overall positively rated, especially for reinforcing and retaining knowledge. Compared to the students from the University of Stavanger, students from Valencia Catholic University rated the e-compendiums more positively in most aspects of learning. Students from University of Nottingham found the e-compendiums to be more important for learning engagement compared to students at the Norwegian study site, and no differences were found in any other aspects of learning. Younger students rated the interactivity and visual components as more important compared to older students. CONCLUSIONS: Students from the University of Nottingham and Valencia Catholic University seem to accept the e-compendiums despite the fact that they were originally developed for use in another country. We argue that, when sharing e-learning resources across countries, an adaptation and translation process that includes a multicultural and multidisciplinary perspective should be carried out.

The practice of glycaemic control in intensive care units: A multicentre survey of nursing and medical professionals.

AIMS AND OBJECTIVES: To determine the views of nurses and physicians working in intensive care units (ICU) about the aims of glycaemic control and use of their protocols. BACKGROUND: Evidence about the optimal aims and methods for glycaemic control in ICU is controversial, and current local protocols guiding practice differ between ICUs, both nationally and internationally. The views of professionals on glycaemic control can influence their practice. DESIGN: Cross-sectional, multicentre, survey-based study. METHODS: An online short survey was sent to all physicians and nurses of seven ICUs, including questions on effective glycaemic control, treatment of hypoglycaemia and deviations from protocols' instructions. STROBE reporting guidelines were followed. RESULTS: Over half of the 40 respondents opined that a patient spending <75% admission time within the target glycaemic levels constituted poor glycaemic control. Professionals with more than 5 years of experience were more likely to rate a patient spending 50%-74% admission time within target glycaemic levels as poor than less experienced colleagues. Physicians were more likely to rate a patient spending <50% admission time within target as poor than nurses. There was general agreement on how professionals would rate most deviations from their protocols. Nurses were more likely to rate insulin infusions restarted late and incorrect dosage of rescue glucose as major deviations than physicians. Most professionals agreed on when they would treat hypoglycaemia. CONCLUSIONS: When surveyed on various aspects of glycaemic control, ICU nurses and physicians often agreed, although there were certain areas of disagreement, in which their profession and level of experience seemed to play a role. RELEVANCE TO CLINICAL PRACTICE: Differing views on glycaemic control amongst professionals may affect their practice and, thus, could lead to health inequalities. Clinical leads and the multidisciplinary ICU team should assess and, if necessary, address these differing opinions.

Behavioural intervention to increase physical activity in adults with coronary heart disease in Jordan.

BACKGROUND: Patients with coronary heart disease often do not follow prescribed physical activity recommendations. The aim of this study was to assess the efficacy of a behavioural intervention to increase physical activity in patients with coronary heart disease not attending structured cardiac rehabilitation programmes. METHODS: Parallel randomised controlled trial comparing 6-month multi-component behavioural change intervention (n = 71) with usual care (n = 85) was conducted in two hospitals in Jordan, Middle East. Intervention included one face-to-face individualised consultation, 6 telephone support calls (for goal-setting, feedback and self-monitoring) and 18 reminder text messages. Patients were randomly allocated to the two groups by opening opaque sealed sequence envelopes. The patients and the researcher who provided the intervention and assessed the outcomes were not blinded. Outcomes were assessed at baseline and 6 months. Primary outcome was physical activity level, secondary outcomes were blood pressure, body mass index, exercise self-efficacy for exercise and health-related quality of life. RESULTS: Intervention and control groups were comparable at baseline. Moderate physical activity significantly increased in the intervention group compared with control group (mean change (SD) of frequency: 0.23 (0.87) days/week versus -.06 (0.40); duration: 15.53 (90.15) minutes/week versus -3.67 (22.60) minutes/week; intensity: 31.05 (105.98) Metabolic equivalents (METs) versus 14.68 (90.40) METs). Effect size was 0.03 for moderate PA frequency, 0.02 for moderate PA duration and 0.01 for moderate PA intensity. Walking significantly increased in the intervention group compared with control group (mean change (SD) of frequency: 3.15 (2.75) days/week versus 0.37 (1.83) days/week; duration: 150.90 (124.47) minutes/week versus 24.05 (195.93) minutes/week; intensity: 495.12 (413.74) METs versus14.62 (265.06) METs). Effect size was 0.36 for walking frequency, 0.05 for walking duration, 0.32 for walking intensity and 0.29 for total PA intensity. Intervention participants had significantly lower blood pressure, lower body mass index, greater exercise self-efficacy and better health-related quality of life at 6 months compared with controls. CONCLUSIONS: Multi-component behavioural intervention increases physical activity, and improves body composition, physiological and psychological outcomes in CHD patients not attending structured rehabilitation programmes. TRIAL REGISTRATION: Current Controlled Trials retrospectively registered in 21-03-2012. ISRCTN48570595 .

Developing a Tool for Assessing the Process of Seeking Health Information: Online Think-Aloud Method.

Nursing students can access massive amounts of online health data to drive cutting-edge evidence-based practice in clinical placement, to bridge the theory-practice gap. This activity requires investigation to identify the strategies nursing students apply to evaluate online health information. Online Think-Aloud sessions enabled 14 participants to express their cognitive processes in navigating various educational resources, including online journals and databases, and determining the reliability of sources, indicating their strategies for information-seeking, which helped to create this scoring system. Easy access and user convenience were clearly the instrumental factors in this behavior, which has troubling implications for the lack of use of higher-quality resources (e.g., from peer-reviewed academic journals). The identified challenges encountered during resource access included limited skills in the critical evaluation of information credibility and reliability, signaling a requirement for improved information literacy skills. Participants acknowledged the importance of evidence-based, high-quality information, but faced numerous barriers, such as restricted access to professional and specialty databases, and a lack of academic skills training. This paper develops and critiques a Performative Tool for assessing the process of seeking health information using an online Think-Aloud method, and explores factors and strategies contributing to evidence-based health information access and utilization in clinical practice, aiming to provide insight into individuals' information-seeking behaviors in online health contexts.

Foot care intervention delivered by community health worker (CHWs): A scoping review.

Variations of Community Health Workers (CHWs) interventions in diabetes self-management education (DSME) have been reviewed by many studies. In contrast, specific interventions regarding foot care intervention (FCI) are scarce and need to be explored further as one preventive measure to reduce diabetic foot problems in the community. This scoping review aimed to identify, and report nature of FCIs and the core components of FCIs delivered by CHWs. The scoping review was undertaken using PRISMA Extension for Scoping Reviews (PRISMA-ScR). The following electronic databases were searched for articles from data first indicated date through December 2022: CINAHL, EMBASE, Cochrane, Scopus, Web of Science, Theses ProQuest, PubMed, google scholar and other sources by using search terms related to foot care, community health workers, and diabetes mellitus. Descriptive synthesis was used to summarise the data. Nine studies from 1644 were included. All studies found that CHWs provided DSME in general, and foot care education was included. There was no detailed description of the core components of the intervention on foot care. Although, all studies might not provide detailed data on how CHW provided FCIs; the CHW intervention is an undoubtedly vital strategy to promote and prevent foot problems in medically underserved communities.

Exploring the underlying factors influencing e-learning adoption in nurse education.

AIMS: To report a study undertaken to explore the underlying factors influencing e-learning adoption in nurse education. BACKGROUND: Despite e-learning's high profile it has not been readily integrated into teaching practice in nurse education. Previous research has identified generic, cross-disciplinary factors but has left out 'soft' factors. DESIGN: The study adopted an exploratory descriptive design. METHODS: Q-methodology was used to explore e-learning adoption in a Division of Nursing located in an institution of Higher Education in the UK. Between September-December 2009, 38 participants were recruited to participate in Q-sorts and post-sort interviews. The Q-sort data were factor analysed and the interviews were coded to their respective factors to develop in-depth narratives. FINDINGS: Four factors were identified: 'E-learning advocates' saw e-learning's potential to improve nurse education and prepare future nurses for their evolving role; the 'Humanists' had avoided e-learning because they valued human interaction; the 'Sceptics' doubted that technology could improve learning outcomes; and the 'Pragmatics,' only used e-learning as a tool to post lecture notes online to supplement what they covered in class. CONCLUSION: The findings point to the variety of responses existing among nurse academics faced with integrating e-learning into their teaching. Moving beyond the binary labels commonly attributed to those considered either 'early adopters' or 'laggards,' the findings contribute to the literature by revealing a wider breadth of views and responses towards technology. Acknowledging these views can inform future e-learning strategies and lead to improvement in e-learning use in nurse education.

E-learning adoption in pre-registration training.

Despite the advances in technology and the many ways in which it can be used in education, many academics are reluctant to include technology in their teaching. Past studies have been unsuccessful in finding out the reasons for this. This article analyses a study that looked into the reasons why nurse educators in particular are reluctant to adopt technology in their teaching practice.

A review of auditory processing and cognitive change during normal ageing, and the implications for setting hearing aids for older adults.

Throughout our adult lives there is a decline in peripheral hearing, auditory processing and elements of cognition that support listening ability. Audiometry provides no information about the status of auditory processing and cognition, and older adults often struggle with complex listening situations, such as speech in noise perception, even if their peripheral hearing appears normal. Hearing aids can address some aspects of peripheral hearing impairment and improve signal-to-noise ratios. However, they cannot directly enhance central processes and may introduce distortion to sound that might act to undermine listening ability. This review paper highlights the need to consider the distortion introduced by hearing aids, specifically when considering normally-ageing older adults. We focus on patients with age-related hearing loss because they represent the vast majority of the population attending audiology clinics. We believe that it is important to recognize that the combination of peripheral and central, auditory and cognitive decline make older adults some of the most complex patients seen in audiology services, so they should not be treated as "standard" despite the high prevalence of age-related hearing loss. We argue that a primary concern should be to avoid hearing aid settings that introduce distortion to speech envelope cues, which is not a new concept. The primary cause of distortion is the speed and range of change to hearing aid amplification (i.e., compression). We argue that slow-acting compression should be considered as a default for some users and that other advanced features should be reconsidered as they may also introduce distortion that some users may not be able to tolerate. We discuss how this can be incorporated into a pragmatic approach to hearing aid fitting that does not require increased loading on audiology services.

An International Multi-Stakeholder Delphi Survey Study on the Design of Disease Modifying Parkinson's Disease Trials.

BACKGROUND: Design of disease modification (DM) trials for Parkinson's disease (PD) is challenging. Successful delivery requires a shared understanding of priorities and practicalities. OBJECTIVE: To seek stakeholder consensus on phase 3 trials' overall goals and structure, inclusion criteria, outcome measures, and trial delivery and understand where perspectives differ. METHODS: An international expert panel comprising people with Parkinson's (PwP), care partners (CP), clinical scientists, representatives from industry, funders and regulators participated in a survey-based Delphi study. Survey items were informed by a scoping review of DM trials and PwP input. Respondents scored item agreement over 3 rounds. Scores and reasoning were summarized by participant group each round until consensus, defined as≥70% of at least 3 participant groups falling within the same 3-point region of a 9-point Likert scale. RESULTS: 92/121 individuals from 13 countries (46/69 PwP, 13/18 CP, 20/20 clinical scientists, representatives from 8/8 companies, 4/5 funders, and 1/1 regulator) completed the study. Consensus was reached on 14/31 survey items: 5/8 overall goals and structure, 1/8 Eligibility criteria, 7/13 outcome measures, and 1/2 trial delivery items. Extent of stakeholder endorsement for 428 reasons for scores was collated across items. CONCLUSIONS: This is the first systematic multi-stakeholder consultation generating a unique repository of perspectives on pivotal aspects of DM trial design including those of PwP and CP. The panel endorsed outcomes that holistically measure PD and the importance of inclusive trials with hybrid delivery models. Areas of disagreement will inform mitigating strategies of researchers to ensure successful delivery of future trials.

A Pilot Study Conducting Online Think Aloud Qualitative Method during Social Distancing: Benefits and Challenges.

COVID-19 social distancing restrictions provided unprecedented insights into online research methodologies and approaches for both participants and researchers. Field research traditionally conducted face-to-face had to be transferred online, highlighting the great strides made in communication technologies (particularly live video streaming) over the last two decades for online qualitative research. However, dedicated research on these phenomena is tentative, including with regard to specific methods such as Think Aloud. This paper contributes to literature on online Think Aloud in qualitative research, evaluating new insights on its adoption online. It draws on findings from an online piloting study of Think Aloud tasks to explore the implications of using real-time internet video calls via SoIP applications by MS Teams. To assess the online Think Aloud process, this review called upon some of the comments made by participants during the semi-structured interview or comments made during the Think Aloud process, when they were relevant to the online process itself. It focuses on different dimensions of benefits, rapport in the session's encounter, challenges, and ethical concerns. Overall, the findings indicate that online Think Aloud sessions cannot completely replace in-person sessions for some particular and highly in-depth research areas, but they can greatly facilitate qualitative data collection in most conventional contexts. It is necessary to carry out further studies exploring the use of this and other online approaches and instructions.

Developing Q-methodology to explore staff views toward the use of technology in nurse education.

Technology in education is moving quickly in terms of the hardware and software applications available, but also due to the expectations of an increasingly digitally competent student population. Academics have to rethink their pedagogy in relation to these changes. Nurse educators, in particular, must face the challenge of effectively integrating technology into what is essentially a hands-on, people-centred profession. To date, the factors most commonly cited as barriers to the adoption of e-learning by academics have focused on explicit and tangible ('hard') issues. Less frequently mentioned are the implicit and tacit ('soft') factors which are harder to identify. This article describes a pilot study using Q-methodology to explore the limitations of commonly used research methods in identifying how these hard and soft issues are prioritised by individuals, through the voices of nurse educators.

Perceived Facilitators and Barriers to Nigerian Nurses' Engagement in Health Promoting Behaviors: A Socio-Ecological Model Approach.

Nurses make up the single largest healthcare professional group in the Nigerian healthcare system. As frontline healthcare providers, they promote healthy lifestyles to patients and families. However, the determinants of Nigerian nurses' personal health promoting behaviors (HPBs) remain unknown. Utilizing the socio-ecological model (SEM) approach, this study aimed to explore the perceived facilitators and barriers to Nigerian nurses' engagement in HPBs. HPBs were operationalized to comprise of healthy dietary behaviors, engagement in physical activity, low-risk alcohol consumption, and non-smoking behaviors. Our study was carried out in a large sub-urban tertiary health facility in Nigeria. Data collection was via face-to-face semi-structured interviews and participants were registered nurses (n = 18). Interview data were transcribed verbatim and analyzed thematically to produce nine themes that were mapped onto corresponding levels of influence on the SEM. Findings show that in Nigeria, nurses perceive there to be a lack of organizational and policy level initiatives and interventions to facilitate their engagement in HPBs. The determinants of Nigerian nurses' HPBs span across all five levels of the SEM. Nurses perceived more barriers to healthy lifestyle behaviors than facilitators. Engagement in healthy behaviors was heavily influenced by: societal and organizational infrastructure and perceived value for public health; job-related factors such as occupational stress, high workload, lack of protected breaks, and shift-work; cultural and religious beliefs; financial issues; and health-related knowledge. Organizations should provide facilities and services to support healthy lifestyle choices in Nigeria nurses. Government policies should prioritize the promotion of health through the workplace setting, by advocating the development, implementation, regulation, and monitoring of healthy lifestyle policies.

Fluoxetine inhibits corticotropin-releasing factor (CRF)-induced behavioural responses in rats.

Corticotropin-releasing factor (CRF) is a potent neuromodulator of stress-related behaviour but the neural mechanisms underlying these effects are not clear. Studies were designed to test the hypothesis that CRF-induced behavioural arousal involves interactions with brainstem serotonergic systems. To examine interactions between CRF and serotonergic systems in the regulation of behaviour, CRF (1 microg, intracerebroventricular (i.c.v.)) or vehicle was infused in the presence or absence of the selective serotonin re-uptake inhibitor fluoxetine (0, 0.1, 1 or 10 mg/kg, intravenous (i.v.)). Fluoxetine was used at these doses because it is known to decrease serotonin cell firing rates while increasing extracellular serotonin concentrations in select forebrain regions. We then measured behavioural, neurochemical and endocrine responses. CRF increased locomotion and spontaneous non-ambulatory motor activity (SNAMA) in the home cages. Fluoxetine decreased tissue 5-hydroxyindoleacetic acid concentrations, a measure of serotonin metabolism, in specific limbic brain regions of CRF-treated rats (nucleus accumbens shell region, entorhinal cortex, central nucleus of the amygdala). Furthermore, fluoxetine inhibited CRF-induced SNAMA. CRF and fluoxetine independently increased plasma corticosterone concentrations, but the responses had distinct temporal profiles. Overall, these data are consistent with the hypothesis that CRF-induced facilitation of behavioural activity is dependent on brainstem serotonergic systems. Therefore, fluoxetine may attenuate or alleviate some behavioural responses to stress by interfering with CRF-induced responses.

eHealth adoption and use among healthcare professionals in a tertiary hospital in Sub-Saharan Africa: a Qmethodology study.

BACKGROUND: The aim of the study was to explore the viewpoints of healthcare professionals (HCPs) on the adoption and use of eHealth in clinical practice in sub-Saharan Africa (SSA). Information and communication technologies (ICTs) including eHealth provide HCPs the opportunity to provide quality healthcare to their patients while also improving their own clinical practices. Despite this, previous research has identified these technologies have their associated challenges when adopting them for clinical practice. But more research is needed to identify how these eHealth resources influence clinical practice. In addition, there is still little information about adoption and use of these technologies by HCPs inclinical practice in Sub-Saharan Africa. METHOD: An exploratory descriptive design was adopted for this study. Thirty-six (36) HCPs (18 nurses and 18 physicians) working in the clinical area in a tertiary health institution in SSA participated in this study. Using Qmethodology, study participants rank-ordered forty-six statementsin relation to their adoption and use of eHealth within their clinical practice.This was analysed using by-person factor analysis and complemented with audio-taped interviews. RESULTS: The analysis yielded four factors i.e., distinct viewpoints the HCPs hold about adoption and use of eHealth within their clinical practice. These factors include: "Patient-focused eHealth advocates" who use the eHealth because they are motivated by patients and their families preferences; "Task-focused eHealth advocates" use eHealth because it helps them complete clinical tasks; "Traditionalistic-pragmatists" recognise contributions eHealth makes in clinical practice but separate from their routine clinical activities; and the "Tech-focused eHealth advocates" who use the eHealth because they are motivated by the technology itself. CONCLUSION: The study shows the equivocal viewpoints that HCPs have about eHealth within their clinical practice. This, in addition to adding to existing literature, will help policymakers/decision makers to consider HCPs views about these technologies prior to implementing an eHealth resource.

Methodology for the analysis and comparison of protocols for glycaemic control in intensive care.

RATIONALE, AIMS, AND OBJECTIVES: The practice of glycaemic control of critically ill patients admitted to intensive care units (ICUs) is guided by clinical management protocols, designed locally by the ICUs. These protocols differ significantly in their aims and methods. The aim of this study was to develop a standardized methodology for the systematic and objective analysis and comparison of protocols for glycaemic control implemented in any ICU. METHOD: The protocols for glycaemic control implemented in seven ICUs of a UK-based ICU network were analysed using techniques of inductive content analysis, through an open coding process and the framework method. This involved the identification and classification of protocol instructions for glycaemic control, as well as of the processes and decisions pertaining to each of these instructions. These were used to develop a framework for the structured and systematic description and comparison of the protocols' contents, and to develop a technique for the protocols' graphic visualization. RESULTS: The following elements were identified or developed: (1) 35 quantifiable variables and 11 non-quantifiable subjects that could be present in an ICU protocol for glycaemic control, to be used as a framework for the description and comparison of contents; (2) a technique for condensing a protocol into a single, comprehensive flowchart; (3) using these flowcharts, a method for assessing the complexity and comprehensiveness of the protocols. CONCLUSIONS: The methodology developed in this study will allow for any future work analysing the contents of glycaemic control protocols to be carried out in a structured and standardized way. This may be done either as a standalone study, or as the essential first step in any investigation on the impact of new protocols. In turn, the methodology will facilitate the performance of regional, national, and international comparisons, demonstrating the usefulness of this study at a global scale.

Towards understanding healthcare professionals' adoption and use of technologies in clinical practice: Using Qmethodology and models of technology acceptance.

BACKGROUND: Technologies have globally been recognised to improve productivity across different areas of practice including healthcare. This has been achieved due to the expansion of computers and other forms of information technologies. Despite this advancement, there has also been the growing challenge of the adoption and use of these technologies within practice and especially in healthcare. The evolution of information technologies and more specifically e-health within the healthcare practice has its own barriers and facilitators. METHODOLOGY: This paper describes a pilot study to explore these factors that influence information and technology adoption and use by health professionals in the clinical area in Sub-Saharan Africa. We report on the use of Q-methodology and the models of technology acceptance used in combination for the first time. The methodology used for this study aims to explore the subjectivity of healthcare professionals and present their shared views (factors) on their adoption and use of e-health within clinical practice.

Semantic Web, Reusable Learning Objects, Personal Learning Networks in Health: Key Pieces for Digital Health Literacy.

The knowledge existing in the World Wide Web is exponentially expanding, while continuous advancements in health sciences contribute to the creation of new knowledge. There are a lot of efforts trying to identify how the social connectivity can endorse patients' empowerment, while other studies look at the identification and the quality of online materials. However, emphasis has not been put on the big picture of connecting the existing resources with the patients "new habits" of learning through their own Personal Learning Networks. In this paper we propose a framework for empowering patients' digital health literacy adjusted to patients' currents needs by utilizing the contemporary way of learning through Personal Learning Networks, existing high quality learning resources and semantics technologies for interconnecting knowledge pieces. The framework based on the concept of knowledge maps for health as defined in this paper. Health Digital Literacy needs definitely further enhancement and the use of the proposed concept might lead to useful tools which enable use of understandable health trusted resources tailored to each person needs.

Attitudes Towards Data Collection, Ownership and Sharing Among Patients with Parkinson's Disease.

BACKGROUND: The ownership and sharing of patient medical data is an increasingly contentious subject in medicine generally but also within the field of Parkinson's disease (PD). Despite being the providers of the medical data, patients are rarely consulted as to its usage. OBJECTIVE: The objective of this paper is to establish patient attitudes to ownership of their own medical data and the sharing thereof. METHODS: We report here the results of an online survey of people with Parkinson's. A total of 310 people took part in the 'sharing data' component of the survey, answering some or all of the questions for which they were eligible. RESULTS: Most respondents (208/306) were aged between 55 and 74 years. 55% of the sample were female and the mean number of years diagnosed was 7.1. Although 93% of respondents were willing to share data, only 41% were currently doing so and a further 8% did not know whether they were sharing any information in this way. There was a significant association between age and data sharing (p = 0.006). However, no clear relationship was found between data sharing and the number of years diagnosed, sex, medication class or health confidence. There was also no consensus among patients on ownership of, access to and usage of their research data. CONCLUSION: The lack of consensus on data ownership and general absence of clear demographic predictors of data sharing implies impaired communication pathways. We suggest that strategies directed towards improved communication may help to clarify data ownership and promote data sharing.