Sharing real-world data for public benefit: a qualitative exploration of stakeholder views and perceptions

Background There has been an increasing interest in the use of “real-world” data to inform care decision making that could lead to public health benefit. Routinely collected service and activity data associated with the administration of care services and service-users (such as electronic health records or electronic social care records), hold potential to better inform effective and responsive decision-making about health and care services provided to national and local populations. This study sought to gain an in-depth understanding regarding the potential to unlock real world data that was held in individual organisations, to better inform public health decision-making. This included sharing data between and within health service providers and local governing authorities, but also with university researchers to inform the evidence base. Methods We used qualitative methods and carried out a series of online workshops and interviews with stakeholders (senior-level decision-makers and service leads, researchers, data analysts, those with a legal and governance role, and members of the public). We identified recurring themes in initial workshops, and explored these with participants in subsequent workshops. By this iterative process we further refined the themes identified, compared views and perceptions amongst different stakeholder groups, and developed recommendations for action. Results Our study identified key elements of context and timing, the need for a different approach, and obstacles including governmental and legal, organisational features, and process factors which adversely affect the sharing of real world data. The findings also highlighted a need for improved communication about data for secondary uses to members of the public. Conclusion The Covid-19 pandemic context and changes to organisational structures in the health service in England have provided opportunities to address data sharing challenges. Change at national and local level is required, within current job roles and generating new jobs roles focused on the use and sharing of real-world data. The study suggests that actions can be taken to unlock the potential of real-world data for public health benefit, and provides a series of recommendations at a national level, for organisational leaders, those in data roles and those in public engagement roles

Unlocking Data to Inform Public Health Policy and Practice: The Report

Background In England, many services that are paid for using taxpayers’ money are decided on and funded by local commissioners such as Local Authorities (LAs) and Clinical Commissioning Groups (CCGs); although, CCGs are set to be replaced by Integrated Care Systems (ICSs) within 2022. LAs are responsible for publicly funded social care (e.g. home-based services) and some public health services (e.g. sexual health services). CCGs are responsible for funding most healthcare services in local areas. All local decision makers aim to fund services for public benefit; for example, promoting and protecting health and preventing ill-health, while ensuring ‘value for money’ for taxpayers. Such services and local decision makers often collect data to inform their processes. This data is used to support the services provided for individuals, but also for administrative reasons. This data could be used more often to help inform improvements to current services and funding of new services, but also to support research by universities. However, as this data could include potentially personal and sensitive information, it is important that it is protected and only shared in circumstances when there is a clear and legal reason that would benefit the public. What did we aim to achieve? We set out to understand: (1) what data is available to local decision makers; (2) how they currently use it; (3) how data can be used and potentially shared with parties who want to use it for public benefit. Furthermore, we aimed to explain how to best use and share data legally with clear reasons for its use. An example would be helping local decision makers calculate which services are considered ‘value for money’ or not, to allow local decision makers to best use money available to them. How did we do it? We first identified examples of when data has been used and legally shared to inform local decision making. We then produced a detailed list of what data these local decision makers have available. These examples and data were discussed with people who work within two LAs and a CCG, within three universities, and members of the public. This allowed us to further explore what is important to consider when using such data to inform local decision making or research purposes, and how the use of such information could be made more transparent and understandable for the public. Patient and the public involvement in the project A lay co-applicant (KS) helped with every aspect of the research project. We additionally set up a public advisory group to advise on the public workshops, interpretation of the findings, and co-design study outputs. What did we discover? Local commissioners are using and sharing data in various ways to benefit the public, such as identifying if certain people may be at-risk of a bad event; for example, older people at-risk of falling who would then require hospital and perhaps social care. However, local commissioners are not always clear in how they report the use of such data, who has control or is using such data, and if any public benefit was ever achieved from recording this data. We attempted to develop an understanding of what data was available for adult social care services. However, we were unable to achieve this aim because of issues to do with the amount of time, effort, and types of staff available within the relevant local commissioners to understand the data available. By discussing the need and use of data with LA and CCG staff, and members of the public, we identified a variety of areas to improve the responsible use of data. One thing discussed was the need for trust and understanding between everyone involved about how and when data is being used, what data is used (for example, if it reflects an individual or group), but also the public benefit of using such data. When analysing data, researchers and local commissioners need to communicate better and come to a joint understanding of how such data can be accessed and used for public benefit. This includes information about what services are considered value for money and who may be paying for what aspects associated with the services across CCGs and LAs, and if there is any chance spending may not remain within budget. Overall, there are ways to responsibly use data which protects the public and could provide public benefit such as treating or avoiding ill-health; however, clearer communication and building trust is needed. How will this research change health and social care? We believe our research could start to change and improve how researchers and local decision makers use locally available data to decide which services to fund to benefit communities. This includes suggested information to be made clearer to the public.</p

EPR study of γ-irradiated feather keratin and human fingernails concerning retrospective dose assessment

In this paper we report the results of comparative EPR studies on free radicals generated in γ-irradiated powder samples of feather keratin powder and human fingernails. In degassed samples of both materials irradiated at 77 K the major component of EPR spectrum represents sulphur-centred radicals in cysteine residues. It quickly decays after air admission at room temperature while a singlet assigned to semiquinone melanin radicals remains the only one seen. The singlet recorded with fingernails decays slowly at room temperature and might be potentially useful for dose assessment by EPR. The advantages and limitations of fingernails EPR dosimetry are discussed

Multifrequency EPR study on radiation induced centers in calcium carbonates labeled with 13C

In calcite and aragonite, γ-irradiated at 77 K, several paramagnetic centers were generated and detected by EPR spectroscopy; in calcite, CO3 – (orthorhombic symmetry, bulk and bonded to surface), CO3 3–, NO3 2–, O3 –, and in aragonite CO2 – (isotropic and orthorhombic symmetry) depending on the type of calcium carbonate used. For calcium carbonates enriched with 13C more detailed information about the formed radicals was possible to be obtained. In both natural (white coral) and synthetic aragonite the same radicals were identifi ed with main differences in the properties of CO2 – radicals. An application of Q-band EPR allowed to avoid the signals overlap giving the characteristics of radical anisotropy

Phase shifts to light are altered by antagonists to neuropeptide receptors

The mammalian circadian clock in the suprachiasmatic nucleus (SCN) is a heterogeneous structure. Two key populations of cells that receive retinal input and are believed to participate in circadian responses to light are cells that contain vasoactive intestinal polypeptide (VIP) and gastrin-releasing peptide (GRP). VIP acts primarily through the VPAC2 receptor while GRP works primarily through the BB2 receptor. Both VIP and GRP phase shift the circadian clock in a manner similar to light when applied to the SCN, both in vivo and in vitro, indicating that they are sufficient to elicit photic-like phase shifts. However, it is not known if they are necessary signals for light to elicit phase shifts. Here we test the hypothesis that GRP and VIP are necessary signaling components for photic phase shifting the hamster circadian clock by testing two antagonists for each of these neuropeptides. The BB2 antagonist PD176252 had no effect on light-induced delays on its own, while the BB2 antagonist RC-3095 had the unexpected effect of significantly potentiating both phase delays and advances. Neither of the VIP antagonists ([D-p-Cl-Phe6, Leu17]-VIP, or PG99-465) altered phase shifting responses to light on its own. When the BB2 antagonist PD176252 and the VPAC2 antagonist PG99-465 were delivered together to the SCN, phase delays were significantly attenuated. These results indicate that photic phase shifting requires participation of either VIP or GRP, and only when signaling in both pathways is inhibited are phase shifts to light impaired. Additionally, the unexpected potentiation of light induced phase shifts by RC-3095 should be investigated further for potential chronobiotic applications.NSERCYe