Unlocking the potential of genetic research in pulmonary arterial hypertension: Insights from clinicians, researchers, and study team.

Genetic research and testing are increasingly important for understanding and treating pulmonary arterial hypertension. We aimed to explore how attitudes toward genetic research among clinical and research teams impacted the engagement in genetic research and the integration of genetic insights into clinical practice. We conducted 53 semistructured interviews and focus groups with patients, clinicians, and researchers from nine UK Pulmonary Hypertension centers, who had genetic research experience. Transcripts were thematically coded using inductive analysis. In this study, we focus on the researchers', clinicians', and study team's perspectives. From the interview data, several key themes emerged, ranging from study design, recruitment, and consent procedures to the return of individual genetic results. Additionally, participants reflected on both the successes of these studies and the future directions of genetic research. The analysis highlighted the critical importance of fostering collaborative networks firmly rooted in existing clinical and research infrastructure in rare disease study setups. Furthermore, the significance of trust-building, personalized communication, and transparency among stakeholders was underscored. The study offered valuable insights into the motivating and hindering factors to participant recruitment and consent procedures. Lastly, the findings gathered from processes surrounding the return of individual genetic results, genetic counselling, and the recruitment of relatives provided invaluable lessons regarding the integration of genetics into clinical practice. This in-depth analysis yields a crucial understanding of attitudes to genetic research among various stakeholders and sheds light on the complexities of genetic research and the evidence-practice gap.

Understanding what drives genetic study participation: Perspectives of patients, carers, and relatives.

Genetic research's growing importance in understanding pulmonary arterial hypertension (PAH) and developing effective treatments prompted the RAPID-PAH study. This study sought feedback from stakeholders who participated in two genomic studies to enhance genetic study delivery and clinical integration. Stakeholders from nine UK PH centres, representing various roles, ages, genders, and mutation statuses, took part in 53 semi-structured interviews and focus groups. Transcripts were thematically coded using inductive analysis. Clustering analysis was conducted to identify patient groups that shared attitudes. In this paper, we focus on patients', carers', and relatives' perspectives. The key interview themes revealed insights into participants' attitudes toward genetic research and testing more generally, expertise and knowledge of the disease itself, motivations and barriers to participating in genetic research, awareness of and interest in consent procedures and the use of personal and genetic data, as well as the process of communicating individual genetic results. Factors influencing genetic research participation included altruistic motives, personal diagnostic experiences, and family-related hopes. Clustering analysis produced distinct clusters based on the presence of barriers and motivators for research participation; however, hardly any patients shared identical sets of attitudes, emphasising the need for personalised approaches to recruitment. Most patients reported poor engagement with study-related materials. Patients who received individual genetic results expressed satisfaction with the process, whereas those who did not were disappointed with the lack of feedback. Reflecting on patient perspectives, we offer recommendations to improve the genetic study delivery process. Enhancing genetic research integration into clinical practice requires tailored engagement, clear communication, and support from healthcare stakeholders.

Using care and support planning to implement routine falls prevention and management for people living with frailty: A qualitative evaluation.

BACKGROUND: Frailty is a key issue in current healthcare delivery and falls is an important component. Care and support planning (CSP) is an established approach to managing long term conditions (LTCs) and has potential to provide more person-centred care for those at risk of falling. This qualitative evaluation aimed to understand the barriers and success criteria involved in incorporating falls assessment and management into the CSP process. METHODS: CSP for falls prevention was implemented in eight general practices in the North of England. Six of the eight practices participated in the qualitative evaluation. Seven group interviews were undertaken with staff (n = 31) that included practice nurses, health care assistants, nurses, and administrative staff (n = 2-8 per group). Observations of the falls and CSP training provided additional data. Interviews covered experiences and potential impacts of training, and processes of implementation of the programme, and were informed by normalisation process theory. Thematic analysis was undertaken using a team-based approach. RESULTS: Although successfully implemented across the practices, how established CSP was and therefore 'organisational readiness' was an overarching theme that illustrated differences in how easily sites were able to implement the additional elements for frailty. The challenges, successes and impacts of implementation are demonstrated through this theme and four further themes: training resources and learning; positive impacts of the programme (including enabling easier conversations around 'frailty'); integrating work processes/work with patients; and dealing with uncertainty and complexity. CONCLUSIONS: Care and Support Planning services designed to target frailty and falls is feasible and can successfully be delivered in the primary care setting, if key enablers are promoted and challenges to implementation addressed from planning through to integration in practice.

Impact of a health marketing campaign on sugars intake by children aged 5-11 years and parental views on reducing children's consumption.

BACKGROUND: The association between Free Sugars intake and non-communicable diseases such as obesity and dental caries is well documented and several countries are taking measures to reduce sugars intakes. Public Health England (PHE) instigated a range of approaches to reduce sugars, including a national health marketing campaign (Sugar Smart). The campaign aimed to raise awareness of the amount of sugars in foods and drinks and to encourage parents to reduce their children's intake. The aim of this study was to determine whether the campaign was effective in altering dietary behaviour, by assessing any impact of the campaign on sugars intake among children aged 5-11 years. Parental perceptions of the campaign and barriers to reducing sugars intake were also explored. METHODS: Parents of 873 children aged 5-11 years, identified from an existing PHE database, were invited to take part. Dietary information was collected online using Intake24 before, during, and at 1, 10 and 12 months following the campaign. Change in sugars intake was assessed using mixed effects linear regression models. One-to-one telephone interviews were conducted with a purposive sample of parents to explore perceptions of the campaign and identify barriers and facilitators to reducing children's sugars intake. RESULTS: Completion rates for dietary assessment ranged from 61 to 72% across the follow up time points. Qualitative telephone interviews were conducted with 20 parents. Total sugars intake decreased on average by ~ 6.2 g/day (SD 43.8) at peak campaign and the percentage of energy from total sugars significantly decreased immediately and 1 year post campaign. The percentage of energy from Free Sugars significantly decreased across all time points with the exception of the long term follow up at 12-months post campaign. The percentage of energy intake from total fat increased. Parents expressed a willingness to reduce sugars intakes, however, identified barriers including time constraints, the normalisation of sugary treats, and confusing information. CONCLUSIONS: A health marketing campaign had a positive impact in reducing sugars intake but reductions in sugars were not sustained. Parents want to reduce their child's sugars intake but societal barriers and confusion over which sources of sugars to avoid hamper efforts to change.

International Data Sharing in Practice: New Technologies Meet Old Governance.

The social structures that govern data/sample release aim to safeguard the confidentiality and privacy of cohort research participants (without whom there would be no data or samples) and enable the realization of societal benefit through optimizing the scientific use of those cohorts. Within collaborations involving multiple cohorts and biobanks, however, the local, national, and supranational institutional and legal guidelines for research (which produce a multiplicity of data access governance structures and guidelines) risk impeding the very science that is the raison d'etre of these consortia. We present an ethnographic study, which examined the epistemic and nonepistemic values driving decisions about data access and their consequences in the context of the pilot of an integrated approach to co-analysis of data. We demonstrate how the potential analytic flexibility offered by this approach was lost under contemporary data access governance. We identify three dominant values: protecting the research participant, protecting the study, and protecting the researcher. These values were both supported by and juxtaposed against a "public good" argument, and each was used as a rationale to both promote and inhibit sharing of data. While protection of the research participants was central to access permissions, decisions were also attentive to the desire of researchers to see their efforts in building population biobanks and cohorts realized in the form of scientific outputs. We conclude that systems for governing and enabling data access in large consortia need to (1) protect disclosure of research participant information or identity, (2) ensure the specific expectations of research participants are met, (3) embody systems of review that are transparent and not compromised by the specific interests of one particular group of stakeholders, and (4) facilitate data access procedures that are timely and efficient. Practical solutions are urgently needed. New approaches to data access governance should be trialed (and formally evaluated) with input from and discussion with stakeholders.

Can Seeding in the Clinic Reach a Wide Audience? A Proof of Concept Study on Spreading a Health Message About Juvenile Idiopathic Arthritis Using a Shareable Online Video.

BACKGROUND: Shareable online video offers the potential for spreading a health message across online and real world social networks. Seeding a message in a clinical setting may be advantageous. OBJECTIVE: To investigate the potential of an online video to spread a health message about juvenile idiopathic arthritis (JIA) when delivered or seeded in a clinical setting and investigate factors that influence sharing behavior. METHODS: Multimethod proof of concept study. Concepts for two different styles of video were developed using focus groups and interviews and reviewed by an online market research panel. We compared dissemination of the two videos from two specialist pediatric rheumatology clinics in NHS Hospitals. Participants were 15 patients, family members, and clinical staff with knowledge of JIA at concept stage; 300 market research panel members in development stage; and 38 patients and their parents or guardians in the seeding stage. Newly diagnosed patients with JIA and/or parents or guardians were invited to view and share an online video with a health message about JIA across real-life and electronic social networks. Main outcome measures were viewing statistics, sharing behavior and patterns, and participant feedback. RESULTS: Of 38 patients and/or their parents or guardians given links, 26 visited the video webpage and shared the link, 2 visited and did not share, and 10 did not visit. Most links were viewed and shared within a few days. A total of 3314 pageviews were recorded with a mean of 89.6 pageviews per link (range 0-1245). Links were accessed from 26 countries, with most viewers in the United Kingdom (82.5%). Mothers were the most active group of sharers. CONCLUSIONS: Distribution of a video link in a clinical setting may be an effective way to spread a health message. Parents or guardians of children with JIA are more likely to share a link than young people. Dissemination depends on a small number of active sharers, the content of the video, and the willingness of participants to share health information about themselves. TRIAL REGISTRATION: UK Clinical Research Network Study Portfolio ID (UKCRN): 13747; http://public.ukcrn.org.uk/Search/StudyDetail.aspx?StudyID=13747 (Archived by WebCite at http://www.webcitation.org/6eeXlMmM6).