Core requirements for successful data linkage: an example of a triangulation method

Developing an International Core Outcome Set for SSD Interventions

OP0269-HPR Patient Participation in Multidisciplinary Team Care: Views of Patients and Health Care Professionals

Health research using routinely collected National Health Service (NHS) data derived from electronic health records (EHRs) and health service information systems has been growing in both importance and quantity. Wide population coverage and detailed patient-level information allow this data to be applied to a variety of research questions. However, the sensitivity, complexity and scale of such data also hamper researchers from fully exploiting this potential. Here, we establish the current challenges preventing researchers from making optimal use of the data sets at their disposal, on both the legislative and practical levels, and give recommendations as to how these challenges can be overcome. A number of projects has recently been launched in the UK to address poor research data-management practices. Rapid Organisation of Healthcare Research Data (ROHRD) at Imperial College, London produced a useful prototype that provides local researchers with a one-stop index of available data sets together with relevant metadata. Increased transparency of data sets' availability and their provenance leads to better utilisation and facilitates compliance with regulatory requirements. Research data resulting from NHS data is often not utilised fully, or is handled in a haphazard manner that prevents full auditability of the research. Furthermore, lack of informatics and data management skills in research teams act as a barrier to implementing more advanced practices, such as provenance capture and detailed, regularly updated, data management strategies. Only by a concerted effort at the levels of research organisations, funding bodies and publishers, can we achieve full transparency and reproducibility of the research.

Integration of osteopathy in the Portuguese National Health Service: Perceptions and expectations of citizens and health professionals

In England, care homes are the primary providers of long-term care for older adults. The increasing recognition of the importance of social care underscores the importance of collaboration between the National Health Service and care homes. The lack of data sharing among stakeholders limits opportunities for co-ordinated care, service development and research. Identify how to support research, service development and innovation in care homes. Combine existing evidence with care home-generated resident data to create a minimum data set that is relevant and usable for stakeholders, including residents, relatives, practitioners, researchers, regulators and commissioners. The study used a mixed-methods approach, structured into five work packages, supported by patient and public involvement and engagement with residents, carers and staff: Work package 1: Conducted two evidence reviews on outcome measures and factors enhancing research productivity in care homes. Work package 2: Created a trial archive for secondary data analysis. Work package 3: Conducted a scoping review, a realist review and a national survey to define minimum data set content and assess implementation challenges in English care homes. Work package 4: Linked residents' data from National Health Service and social care data sets with data from study care homes, deriving useful minimum data set variables and assessing data quality. Work package 5: Piloted the minimum data set at two points in care homes within three integrated care systems, conducted focus groups and interviews with care home and integrated care system staff. Three national consultations explored how stakeholders use resident information, measure quality of life and minimum data set usefulness. Additionally, subprojects examined data availability in domiciliary settings, staff reasoning when assessing resident well-being and completing research during rapid policy changes. The reviews revealed significant heterogeneity in outcome measurement and questioned the appropriateness of some methods and measures used for care home research. The Virtual International Care Home Trials Archive merged data from 6 United Kingdom randomised controlled trials with 5674 residents across 308 care homes. International minimum data set studies are a valuable resource for international comparative research. The wide range of measures used are mostly clinical with under-representation of measures important to care homes (e.g. quality of life). A national survey of care homes demonstrated the range of information, including clinical measures being routinely collected. The realist review identified motivation, front-line staff monitoring and embedded recording systems as important for minimum data set implementation. The pilot study recruited 996 residents from 45 care homes, with 727 residents' data included in the minimum data set. Residents' digital care records were linked to statutory health and social care data sets, creating a viable minimum data set prototype with metadata as resource. The study provided an evidence-based critique of care home research and a resource for secondary data analysis for future research. It developed a prototype minimum data set linking National Health Service, social care and care home data, demonstrating its importance as a basis for discussions between health and care staff. The COVID-19 pandemic disrupted relationships and recruitment. Governance challenges prevented linking residents' data to general practitioner records. Future research should assess whether the care home minimum data set improves resident outcomes, service delivery, staff experience, cross-sector collaboration, resource use and digital technology implementation. This synopsis presents independent research funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme as award number NIHR127234.

Diabetes is one of the most common long-term health conditions worldwide, placing a huge economic burden on health services. Diabetes self-management education and support programmes can support people with diabetes to manage their condition; however, uptake of face-to-face services remains low. Digital self-management tools are becoming increasingly available. MyWay Diabetes is a digital platform that offers a comprehensive self-management and education programme accessible through a mobile app and website and allows patients to access their personal healthcare records. Following successful implementation in Scotland, MyWay Diabetes is now being rolled out in three geographical areas in England. We plan to undertake three qualitative studies, as part of a larger mixed-methods research programme, to assess whether MyWay Diabetes is acceptable across diverse patient groups and healthcare professionals and gather views of patients who do not currently use the digital service. We will conduct three online focus group studies. (1) One focus group with healthcare professionals (n=6-10) to understand their perceptions of implementing MyWay Diabetes in their local regions. (2) Up to four focus groups with existing users of MyWay Diabetes (n=24-40) across the three geographical areas in England to explore their acceptability of the platform. (3) Up to three focus groups with people living with diabetes who do not currently use MyWay Diabetes (n=18-30). Data will be collected using online videoconferencing and analysed thematically using template analysis. Ethical approval was granted by South Central - Berkshire Research Ethics Committee (ref: 25/SC/0125) and The University of Manchester Proportionate Research Ethics Committee (ref: 2025-23064-42006). Study results will be disseminated through peer-reviewed journals, conference presentations, MyWay Digital Health platforms and national bodies. The evidence from this broader mixed-methods evaluation will inform decisions for platform improvement and regional and national commissioning across the National Health Service in England.

There is no consensus on which domains should be measured or which instruments should be used in clinical trials for psoriasis therapies. To achieve international consensus among psoriasis stakeholders on a core set of domains that should be measured in all psoriasis clinical trials. Literature review, pre-Delphi survey exercises, nominal group discussions, and audience voting at 4 stakeholder meetings were used to develop candidate domains for 2 rounds of a Delphi survey. Stakeholders were patients or advocates of patients with psoriasis and health care professionals (HCPs) with expertise in psoriasis, including physicians, scientists, advocacy organization representatives, and regulators. Delphi surveys were conducted electronically from October through December 2015 and between September and October 2016. Stakeholder discussions with audience response voting were conducted at live meetings in the United States, Canada, and Italy from January 2013 to December 2016 to refine and ratify the core set of domains. Two rounds of an electronic Delphi survey were used to determine consensus. A domain was considered "core" (ie, should be measured in all trials) if a threshold consensus of at least 70% was met in both patient and HCP groups. Domains meeting consensus in only 1 group were considered to be important but were not required to be measured in all trials ("middle ring"). These domains were included for rerating in round 2. Domains that did not meet consensus in either of the groups ("outer ring") were considered to be of uncertain importance and were placed in the research agenda. In round 1 of the Delphi survey, 107 HCPs and 14 patients participated. Most HCPs (72 [67%]) were dermatologists between 46 and 64 years old (71 [66%]), white (78 [73%]), and male (75 [70%]) from North America (60 [57%]) and Europe (34 [32%]).There were 10 pharmaceutical industry clinical or health economic scientists, 3 advocacy organization representatives, 2 regulatory agency representatives, and 5 "other." In the second round, 77 HCPs and 15 patients participated. Of the 20 candidate domains, the following 6 met consensus as core domains: skin manifestations, psoriasis and psoriatic arthritis symptoms, health-related quality of life, investigator global assessment, patient global assessment, and treatment satisfaction. Secondary skin manifestations as well as nail, inverse, genital, and guttate psoriasis were classified as important but not mandatory. Psoriatic arthritis signs, work productivity or participation, economic impact (direct and indirect cost), and cardiovascular disease comprised the research agenda. This iterative Delphi process yielded international consensus among professional and patient stakeholders on 6 domains that should be measured in all clinical trials for psoriasis. Future International Dermatology Outcome Measures group efforts will focus on development of a core outcome measurement set for psoriasis trials.

The availability of anonymized data is a keystone of medical research, yet little is known about lay views towards the process of anonymization or on the way that anonymized medical data are transferred to researchers. During May and June 2009, as part of a wider consultation on methods for releasing data to researchers, three focus groups (n = 19) were conducted exploring lay attitudes towards the traditional 'warehouse' model commonly used in medical research for delivering anonymized National Health Service (NHS) data to researchers. The focus groups explored different processes such as the copying of data, use of programmers for linkage and anonymization, the transfer of data and governance. The recognition of the positive aspects of medical research and desire to support it formed the context for discussions. Nonetheless, individuals varied in their attitudes to the use of anonymized data extracts for research from their health records (without consent); although some appeared positive wanted to be asked to consent for this use. Furthermore, participants were acutely aware of security breaches of NHS information nevertheless, they continued to display a high level of trust in NHS staff. Participants were concerned about the practicalities of the warehouse model and relied on their own life experiences to make sense of the model (using analogies with 'banks' or 'libraries'). The general attitude towards the processes underlying the warehouse model might best be captured by the term 'ambivalence'. This research (1) offers unique insights into views of anonymization of health data extracts, how it is undertaken and data are transferred and (2) adds to an increasing body of work that demonstrates that a minority of individuals are concerned about consent, even when data are anonymized although (3) those concerned about anonymization do not necessarily seek resolution through gaining consent.

Sharing patients' records to boost medical research

Health-care professional and parental views and experiences of implementing infant feeding interventions: a qualitative evidence synthesis

BackgroundAdvances in technology means that domiciliary non-invasive ventilation (NIV) devices can be remotely monitored via modems in patients’ homes. Possible benefits and challenges of modem technology have yet to be...

Introduction There has been substantial growth in research exploring use of digital health technologies (DHT) to improve global population health. Harnessing the potential of DHT for the early detection of neurodegenerative diseases is one such area.1 According to the National Institute for Health and Care Excellence, DHTs need to be credible for UK Healthcare Professionals (HCPs); HCPs should be involved in the development and implementation process of DHTs to ensure that their needs are met and to promote the successful adoption into healthcare systems.2 Aim To explore HCPs’ perspectives on key considerations of developing and implementing DHT for the early detection of dementia causing diseases, such as Alzheimer’s, within the National Health Service (NHS). Methods Ethical approval was granted from Newcastle University Ethics Committee. HCPs with patient-facing roles within primary or secondary care NHS settings were recruited through various online networks alongside a snowball sampling approach. Participants took part in a semi-structured audio-recorded interview exploring their experience of current diagnostic practices, opinions on the early detection of dementia causing diseases and the use of DHT to aid this approach, and the challenges of implementing such interventions into healthcare. The framework approach was used to thematically analyse the verbatim transcripts to identify core concepts and themes emerging within the interviews. A list of core concepts and themes was applied systematically to the whole data set using QSR N-Vivo (Version 1.6.1). The research team then used the ‘constant comparison’ technique to move backwards and forwards between these data and evolve explanations until a fit was made. Results Eighteen interviews were conducted with 11 primary and seven secondary care HCPs. Our analysis highlighted three core concepts, centring around considerations for healthcare service users, HCPs, and the DHT when developing and implementing DHT for the early detection of dementia causing diseases. HCPs recognised the potential benefits of providing an early detection of dementia causing diseases to healthcare services users, but only if a suitable intervention was available to allow individuals to potentially reduce their risk. Additionally, HCPs were concerned about the impact on health inequity, such as accessibility of this type of service to individuals who have disabilities or could be possibly digitally excluded. Many HCPs were also concerned about the impact on the healthcare system, with fears that it could overburden the NHS if sufficient resources and support were not provided for its implementation. In regard to the DHT, HCPs were positive about the possibility of a DHT to remotely capture real time data and felt it would be important to capture different modalities to help differentiate between dementia causing diseases. Discussion/Conclusion This study highlights the need to design a DHT for the early detection of dementia causing diseases that is accessible to users, to promote health equity. This study also highlights potential barriers for researchers when implementing a DHT into the NHS, although it cannot be assumed that these are the only barriers that may be encountered; developers will need to consider this so that a future DHT meet HCPs’ needs.

Sharing news of a lung cancer diagnosis with adult family members and friends: a qualitative study to inform a supportive intervention

Background: Childhood obesity is a complex disease resulting from the interaction of multiple factors. The effective management of childhood obesity requires assessing the psychosocial and lifestyle factors that may play a role in the development and maintenance of obesity. This study centers on available scientific literature on psychosocial and lifestyle assessments for childhood obesity, and experiences and views of healthcare professionals with regard to assessing psychosocial and lifestyle factors within Dutch integrated care. Methods: Two methods were used. First, a scoping review (in PubMed, Embase, PsycInfo, IBSS, Scopus and Web of Science) was performed by systematically searching for scientific literature on psychosocial and lifestyle assessments for childhood obesity. Data were analysed by extracting data in Microsoft Excel. Second, focus group discussions were held with healthcare professionals from a variety of disciplines and domains to explore their experiences and views about assessing psychosocial and lifestyle factors within Dutch integrated care. Data were analysed using template analysis, complemented with open coding in MAXQDA. Results: The results provide an overview of relevant psychosocial and lifestyle factors that should be assessed and were classified as child, family, parental and lifestyle (e.g. nutrition, physical activity and sleep factors) and structured into psychological and social aspects. Insights into how to assess psychosocial and lifestyle factors were identified as well, including talking about psychosocial factors, lifestyle and weight; the professional-patient relationship; and attitudes of healthcare professionals. Conclusions: This study provides an overview of psychosocial and lifestyle factors that should be identified within the context of childhood obesity care, as they may contribute to the development and maintenance of obesity. The results highlight the importance of both what is assessed and how it is assessed. The results of this study can be used to develop practical tools for facilitating healthcare professionals in conducting a psychosocial and lifestyle assessment.

Tackling the UK's alcohol problems