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IntroductionThe BREATHE Health Data Research Hub is a consortium of five academic institutions and several industry partners seeking to facilitate and accelerate respiratory science initiatives and outcomes. Unlocking organisational, jurisdictional, and scientific challenges, such as differing and inherent complexities with data standards, incongruous governance, and disparate data access mechanisms for over 100 diverse UK datasets are key aims.
Objectives and ApproachCentral to the data effort is the UK Secure eResearch Platform (SeRP UK), and its flagship tenancy, the SAIL Databank. Onboarding datasets, making them remotely available to the respiratory research community, is a key approach. Datasets targeted range from population cohort studies, to respiratory trials data, routine healthcare datasets, and specialist 'omics data. Partnerships with national safe havens and providers such as eDRIS and NHS Digital will enable BREATHE to expedite and improve wider sharing of datasets for the respiratory science.
Data improvements focus on datasets from primary, secondary, and tertiary care from national healthcare systems, 'respiratorising' these datasets and increasing utility for academic and industry respiratory scientists. Incorporating dataset metadata and access permutations into national cataloguing systems at HDR UK, standardising metadata, and interoperability for in-scope datasets form a concerted data quality improvement effort.
ResultsFacilitating data sharing through initiatives such as BREATHE will increase visibility and accessibility for datasets within respiratory science, whilst addressing national cultural and governance issues to data sharing. BREATHE data sharing processes will allow for team science to be undertaken in a highly collaborative manner and allow for best practise in data collection and sharing to flow to nationwide datasets in respiratory science.
Conclusion / ImplicationsCollaborative hubs with scientific domain expertise can be created and leveraged to accelerate data sharing and data science within the scientific area. These collaborative efforts can however be translated to other disease-specific efforts, and indeed disease agnostic platform solutions.

This qualitative research informed the Theory of Planned Behaviour (TPB)-based intervention development. This dataset was generated as part of formative research conducted on patients of chronic respiratory disease (CRD), their caregivers and community members to get a perception of their awareness, practices of health behaviour and their opinions regarding CRD. The study also elicited the socio-cultural barriers and the psycho-social effects due to the disease. The insight into the existing health behaviour and the barriers to appropriate behaviour informed the development of a TPB based health intervention for behaviour change in patients with CRD. ; Focus Group Discussion 1.txt - transcript of focus group discussion (FGD) among females with Chronic respiratory disease (CRD), =50 years of age from a rural village (village 1) Focus Group Discussion 3.txt - transcript of FGD among females with CRD, >=50 years of age from a rural village (village 2) Focus Group Discussion 4.txt - transcript of FGD among males with CRD, =50 years of age from a rural village (village 3) Focus Group Discussion 6.txt - transcript of FGD among males with CRD, =50 years of age from a rural village (village 4) Focus Group Discussion 2.txt - transcript of FGD among females with CRD, <50 years of age from a rural village (village 4) In-depth Interview 1.txt - transcript of in-depth interview with caregiver 1 (male) in village 2 In-depth Interview 2.txt - transcript of in-depth interview with caregiver 2 (male) in village 4 In-depth Interview 3.txt - transcript of in-depth interview with caregiver 3 (male) in village 3 In-depth Interview 4.txt - transcript of in-depth interview with caregiver 4 (female) in village 1 In-depth Interview 5.txt - transcript of in-depth interview with caregiver 5 (female) in village 3 Key Informant Interview_BDO.txt - transcript of key informant interview with block development officer Key Informant Interview_BMO.txt - transcript of key informant interview with block medical officer Key Informant Interview_Head Govt Girls High School.txt - transcript of key informant interview with the head of a girls high school Key Informant Interview_Panchayat Menber.txt - transcript of key informant interview with member of a local government

This study was funded by the UK Medical Research Council (ref G0701604), and managed by the National Institute for Health Research (NIHR-EME 09-800-26) on behalf of the MRC-NIHR partnership, Efficiency and Mechanism Evaluation Programme. The Health Services Research Unit and the Health Economics Research Unit are both funded by the Chief Scientist Office of the Scottish Government Health and Social Care Directorates. The funders had no role in the study design; collection, analysis, and interpretation of data; the writing of the report; or in the decision to submit the article for publication. The views expressed in this article are those of the authors and do not necessarily reflect the views of the MRC, National Institute for Health Research, the Department of Health, or the Scottish Government. ; Peer reviewed ; Publisher PDF

This study was funded by the UK Medical Research Council (ref G0701604), and managed by the National Institute for Health Research (NIHR-EME 09-800-26) on behalf of the MRC-NIHR partnership, Efficiency and Mechanism Evaluation Programme. The Health Services Research Unit and the Health Economics Research Unit are both funded by the Chief Scientist Office of the Scottish Government Health and Social Care Directorates. ; Objective To investigate the cost effectiveness of early lens extraction with intraocular lens implantation for the treatment of primary angle closure glaucoma (PACG) compared to standard care. Design Cost effectiveness analysis alongside a multicentre pragmatic two-arm randomised controlled trial. Patients were followed up for 36 months and data on health service utilisation and health state utility were collected and analysed within the trial time horizon. A Markov model was developed to extrapolate the results over a 5 and 10-year time horizon. Setting: 22 hospital eye services in the United Kingdom. Population: Males and females aged 50 years or over with newly diagnosed PACG or primary angle closure (PAC). Interventions: Lens extraction compared to standard care (i.e. laser iridotomy followed by medical therapy and glaucoma surgery). Outcome measures: Costs of primary and secondary health care utilisation (UK NHS perspective), quality adjusted life years (QALYs) and the incremental cost effectiveness ratio (ICER) for lens extraction versus standard care. Results: The mean age of participants was 67.5 (8.42), 57.5% were female, 44.6% had both eyes eligible, 1.4% were of Asian ethnicity and 35.4% had PAC. Mean health service costs were higher in patients randomized to lens extraction: £2,467 versus £1,486. Mean adjusted QALYs were also higher with early lens extraction: 2.602 versus 2.533. The ICER for lens extraction versus standard care was £14,284 per QALY gained at three years. Modelling suggests that the ICER may drop to £7,090 per QALY gained by 5 years, and that lens extraction may be cost saving by 10 years. Our results are generally robust to changes in the key input parameters and assumptions. Conclusions We find that lens extraction has a 67-89% chance of being cost effective at 3 years, and that it may be cost saving by 10 years. ; Publisher PDF ; Peer reviewed

NIHR Health Technology Assessment programme 08/24/02 This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme (project number 08/24/02) and will be published in full in the HTA series. The Health Services Research Unit of the University of Aberdeen is funded in part by the Chief Scientist's Office of the Scottish Government's Health and Social Care Directorates. JAC held Medical Research Council UK training (reference number G0601938) and methodology (reference number G1002292) fellowships while this research was undertaken ; Peer reviewed ; Publisher PDF

UK National Institute for Health Research Health Technology Assessment Programme. Acknowledgments We thank the women who participated in the HEALTH study. We also thank Angela Hyde (Vice Chair of the Royal College of Obstetricians and Gynaecologists Women's Network until September, 2015, and co-applicant on the original grant application until October, 2016) for her contribution to the design of the participant facing documents and participation in trial meetings from the perspective of a patient, Jonathan Cook (statistician and co-applicant on the original grant application until April, 2014) for his contributions to the study design, Rebecca Bruce for her secretarial support and data management, members of the project management group for their ongoing advice and support of the trial, plus the independent members of the trial steering committee (Henry Kitchener [Chair], Patrick Chien, Barbara Farrell, and Isobel Montgomery) and data monitoring committee (Jane Norman [Chair], Peter O'Donovan, and Andy Vail), and the staff at the recruitment sites who facilitated recruitment, treatment, and follow-up of trial participants. The project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment Programme (project number 12/35/23). The Health Services Research Unit and the Health Economics Research Unit are funded by the Chief Scientist Office of the Scottish Government Health and Social Care Directorates. The views expressed herein are those of the authors and not necessarily those of the NIHR or the UK Department of Health and Social Care. ; Peer reviewed ; Publisher PDF

Funding: The project was funded by the National Institute of Health Research (NIHR) Health Technology Assessment (HTA) Programme (project number 12/35/38). The Health Services Research Unit is funded by the Chief Scientist Office of the Scottish Government Health and Social Care Directorates. The funders had no role in considering the study design or in the collection, analysis, or interpretation of data; writing the report; or the decision to submit the article for publication. The views expressed herein are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care. Acknowledgments Sponsor representative: Pauline Hyman-Taylor (from February 2019), Natalie McGregor (March 2015 to February 2019), Audrey Athlan (from July 2014 to March 2015), Joanne Thornhill (from 2013 to July 2014). Patient and public involvement representative: Rick Walsh, Russel Young. CHaRT Trial Office: Mark Forrest (from 2015), Gladys McPherson (until 2015). CHaRT Trial Office data coordinator: Pauline Garden. Health economists: Eoin Maloney (until 2015), Mehdi Javanbakht (until June 2019).All participants in the trial, staff, and members of the TAGS Investigator Group responsible for recruitment in the clinical centres. ; Peer reviewed ; Publisher PDF

Acknowledgments: We thank the participants of this study, community pharmacists who recruited women for the study, and health-care professionals at the sexual and reproductive health service clinics who assisted with the study implementation. We thank Deirde Sally, Nicola Stewart, and Maria Nunez for the support with study implementation at the local site in London and Kristina Saunders for support with the process evaluation. We also thank Sarah Cameron and Lorna Aucott (senior statistician, the Centre for Healthcare Randomised Trials) for support and Katherine Lewis, Laura Flett, and Judith Parker for trial management support. List of study pharmacies in Edinburgh: Newington Pharmacy, Boots Princes Street, Boots Shandwick Place, Boots Earl Grey Street, Boots Gyle, Boots St Patrick Street, Boots Multrees Walk, Boots Ocean Terminal, Boots Edinburgh Fort Retail Park, Boots Cameron Toll, Boots Craigleith, and Bristo Square Pharmacy. List of study pharmacies in London: Peace Pharmacy, Westbury Chemist, Baba Chemist, Lings Chemist, Streatham Day Lewis, Morrisons—Aylesham Centre, Evergreen Pharmacy, Greenlight Pharmacy, Sandylight Pharmacy, Greenfields, JP Pharmacy, Boots Goodge Street, Boots Tottenham Court Road, and Boots Holborn. Additionally, Asda Pharmacy (Perth), Boots High Street and Boots Perth Road (Dundee). List of sexual and reproductive health clinics: Chalmers Sexual and Reproductive Health Service, NHS Lothian (Edinburgh), Tayside Sexual and Reproductive Health Service, Ninewells Hospital (Dundee), Camberwell Sexual Health Centre, Mortimer Market Centre, the Margaret Pyke Centre, and the Archway Centre (London). Declaration of interests: STC reports grants from the National Institute for Health Research (Health Technology Assessment [NIHR HTA] Programme), during the conduct of the study. AG is a consultant to HRA Pharma. AR reports receiving research grants from Gilead Sciences, Bristol-Myers Squibb, AbbVie, and Roche; honorariums from Gilead Sciences; and personal fees from AbbVie. LM and SP report funding from the UK Medical Research Council and Scottish Government Chief Scientist Office (Central Statistics Office) at the University of Glasgow (MC_UU_12017/11, SPHSU11). PB is a clinical director of the not-for profit community interest company SH:24, that provides online sexual health services in partnership with the UK National Health Service. KC reports being an employee of Boots UK, during the conduct of this study. AleM reports grants from NIHR HTA, during the conduct of this study. AleM is a clinical support bank midwife for SH:24 and a research midwife at Oxford University. JN was a deputy chair of the NIHR HTA General Board Committee (2016–19). All other authors declare no competing interests. This research is funded by the NIHR HTA project 15/113/01. ; Peer reviewed ; Publisher PDF

Funding: The project was funded by the National Institute of Health Research (NIHR) Health Technology Assessment (HTA) Programme (project number 12/35/38). The Health Services Research Unit is funded by the Chief Scientist Office of the Scottish Government Health and Social Care Directorates. ; Objective : To determine whether primary trabeculectomy or primary medical treatment produces better outcomes in term of quality of life, clinical effectiveness, and safety in patients presenting with advanced glaucoma. Design : Pragmatic multicentre randomised controlled trial. Setting : 27 secondary care glaucoma departments in the UK. Participants : 453 adults presenting with newly diagnosed advanced open angle glaucoma in at least one eye (Hodapp classification) between 3 June 2014 and 31 May 2017. Interventions : Mitomycin C augmented trabeculectomy (n=227) and escalating medical management with intraocular pressure reducing drops (n=226). Main outcome measures : Primary outcome: vision specific quality of life measured with Visual Function Questionnaire-25 (VFQ-25) at 24 months. Secondary outcomes: general health status, glaucoma related quality of life, clinical effectiveness (intraocular pressure, visual field, visual acuity), and safety. Results : At 24 months, the mean VFQ-25 scores in the trabeculectomy and medical arms were 85.4 (SD 13.8) and 84.5 (16.3), respectively (mean difference 1.06, 95% confidence interval −1.32 to 3.43; P=0.38). Mean intraocular pressure was 12.4 (SD 4.7) mm Hg for trabeculectomy and 15.1 (4.8) mm Hg for medical management (mean difference −2.8 (−3.8 to −1.7) mm Hg; P<0.001). Adverse events occurred in 88 (39%) patients in the trabeculectomy arm and 100 (44%) in the medical management arm (relative risk 0.88, 95% confidence interval 0.66 to 1.17; P=0.37). Serious side effects were rare. Conclusion : Primary trabeculectomy had similar quality of life and safety outcomes and achieved a lower intraocular pressure compared with primary medication. ; Publisher PDF ; Peer reviewed

Funding: This trial was funded by the National Institute for Health Research (NIHR), Health Technology Assessment programme (project No 11/71/03). The Chief Scientist Office, Scottish Government Health and Social Care Directorates funded SH's post, and the NIHR Collaboration for Leadership in Applied Health Research and Care South West Peninsula at the Royal Devon and Exeter NHS Foundation Trust supported SD. The study funders had no role in the study design, data collection, data analysis, data interpretation, writing of the manuscript, or decision to submit for publication. The research team was independent from the funders. All authors had access to all study data and take responsibility for its integrity and the accuracy of the data analysis. The views expressed in this publication are those of the authors and not necessarily those of the National Health Service, the NIHR, or the Department of Health and Social Care. The trial sponsor was Glasgow Caledonian University. Data sharing: Individual participant data collected for this trial, and a data dictionary defining each field in the dataset, will be made available to others; all available data will be de-identified participant data. The protocol, statistical analysis plan, informed consent form, and ethics committee approval are available (https://www.journalslibrary.nihr.ac.uk/programmes/hta/117103/#/). To access data, a request should be submitted to the corresponding author (s.hagen@gcu.ac.uk) with a scientific proposal including objectives. Written proposals will be assessed by members of the trial steering committee and a decision made about the appropriateness of the request. The data will only be shared after the data sharing agreement is fully executed. ; Peer reviewed ; Publisher PDF

Acknowledgments The project was funded by the National Institute for Health Research Health Technology Assessment Programme (project number 07/60/18). The Health Services Research Unit and the Health Economics Research Unit are funded by the Chief Scientist Office of the Scottish Government Health and Social Care Directorates. The authors wish to thank the women who participated in the PROSPECT study. We also thank Margaret MacNeil for her secretarial support and data management; Dawn McRae and Lynda Constable for their trial management support; the programming team in CHaRT, led by Gladys McPherson; members of the Project Management Group for their ongoing advice and support of the study; and the staff at the recruitment sites who facilitated the recruitment, treatment and follow-up of study participants. The views and opinions expressed herein are those of the authors and do not necessarily reflect those of the UK Health Technology Assessment Programme, the National Institute of Health Research, the National Health Service, or the Department of Health. ; Peer reviewed ; Publisher PDF

Acknowledgments Special thanks must go to all of the SUSPEND trial participants and staff at each of our recruiting centres for taking part in this trial. We thank our collaborators at the SUSPEND sites, and participating National Health Service (NHS) trusts and boards (NHS Grampian, Plymouth Hospitals NHS Trust, The Newcastle upon Tyne Hospitals NHS Foundation Trust, NHS Highland, South Tees Hospitals NHS Foundation Trust, City Hospitals Sunderland NHS Foundation Trust, The Leeds Teaching Hospitals NHS Trust, North Bristol NHS Trust, University Hospitals Bristol NHS Trust, Norfolk and Norwich University Hospitals NHS Foundation Trust, The Royal Liverpool and Broadgreen University Hospitals NHS Trust, NHS Lothian, Guy's and St Thomas' NHS Foundation Trust, St George's Healthcare NHS Trust, Abertawe Bro Morgannwg University Health Board, Mid Yorkshire Hospitals NHS Trust, South Devon Healthcare NHS Foundation Trust, Sheffield Teaching Hospitals NHS Foundation Trust, Cambridge University Hospitals NHS Foundation Trust, Gloucestershire Hospitals NHS Foundation Trust, University Hospitals Birmingham NHS Foundation Trust, Central Manchester University Hospitals NHS Foundation Trust, Southampton University Hospitals NHS Trust, and The University Hospital of South Manchester NHS Foundation Trust). We thank the staff at the SUSPEND trial office based in the Centre for Healthcare Randomised Trials (CHaRT) within the Health Services Research Unit, University of Aberdeen. This report presents independent research funded by the National Institute for Health Research (NIHR) Health Technology Assessment (HTA) Programme, Project Number 08/71/01. The views and opinions expressed in this report are those of the authors and do not necessarily reflect those of the HTA Programme, the NIHR, the NHS, or the Department of Health. The Health Services Research Unit is core funded by the Chief Scientist Office of the Scottish Government Health and Social Care Directorates; however, the opinions expressed in this publication are those of ...

Acknowledgments We thank all the participants who agreed to take part in the trial. This study was supported by NHS Research Scotland, through the Chief Scientist Office and the Scottish Mental Health Research Network, and the Mental Health Research Network. We are grateful to the Psychosis Research Unit Service User Reference Group for their consultation regarding the design of the study and contribution to the developments of study-related materials. We are grateful to our Independent Trial Steering Committee (Max Birchwood, Daniel Freeman, Rod Taylor, Julia Renton, David Shiers, Yvonne Thomas, and Kathryn Harney) and Independent Data Monitoring Committee (Richard Bentall, Sabine Landau, Emmanuelle Peters, and Tim Rawcliffe) for providing oversight of the trial. We are also grateful to the many researchers, network staff, and trial therapists who supported the study (Rachel Allan, Vicky Brooks, Nicola Chapman, Lucy Clarke, Shauneen Porter, Mary Shinner, Yvonne Slater, Lisa Wood, Eilish Burke, Lucy Carter, Caoimhe Clarke, Anna Cummings, Jacqueline McTaggart, Rachel Sellers, Kate Shirvell, and Helen Whitehill). This project was funded by the National Institute for Health Research Health Technology Assessment programme (project number 10/101/02) and will be published in full in the Health Technology Assessment. The Health Services Research Unit is funded by the Chief Scientist Office of the Scottish Government Health Directorate. The views and opinions expressed are those of the authors and do not necessarily reflect those of the Health Technology Assessment programme, National Institute for Health Research, NHS, or Department of Health. ; Peer reviewed ; Publisher PDF