Health Informatics Working Group Remit
Health Informatics Working Group Expression of Interest Form
CORMORANT-UK Study: Priority setting the remaining opportunities for the use of routinely collected data in trials. Presented by Fiona Lugg-Widger (Cardiff University)
8th August 2022
Online: 18th January 2021
Videos of presentations
This is a list of publications from Health Informatics Working Group members or of interest in the area.
Lensen S, Macnair A, Love SB, et al. Access to routinely collected health data for clinical trials - review of successful data requests to UK registries. Trials 2020; 21(1): 398.
Love S, Kilanowski A, Yorke-Edwards V, et al. Use of Routinely Collected Health Data in Randomised Clinical Trials: Comparison of Trial-Speci?c Death Data in The BOSS Trial with NHS Digital Data. ResearchSquare (Trials) 2020; Pre-print.
Paprica PA, Sydes MR, McGrail KM, Morris AD, Schull MJ, Walker R. Prospective data linkage to facilitate COVID-19 trials - A call to action. Int J Popul Data Sci 2020; 5(2): 1383.
Sydes MR, Love SB, Murray ML, Lensen S, Macnair A, Carpenter J. SWAT 125: Comparison of trial-collected and routinely-collected death data. Queens University Belfast, 2020
Ibrahim H, Liu X, Rivera SC, et al. Reporting guidelines for clinical trials of artificial intelligence interventions: the SPIRIT-AI and CONSORT-AI guidelines. Trials 2021; 22(1): 11.
Ahmed S, Sydes M, Love S, Carpenter J. Assessing the agreement of routinely-collected health data and case record form data in randomised controlled trials: a systematic review (CRD42020186048). 2020. https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42020186048.
McKay AJ, Jones AP, Gamble CL, Farmer AJ, Williamson PR. Use of routinely collected data in a UK cohort of publicly funded randomised clinical trials. F1000Research 2020; 9(323): 323.
Mc Cord KA, Ewald H, Agarwal A, et al. Treatment effects in randomised trials using routinely collected data for outcome assessment versus traditional trials: meta-research study. BMJ 2021; 372: n450.
Steinhubl SR, Wolff-Hughes DL, Nilsen W, Iturriaga E, Califf RM. Digital clinical trials: creating a vision for the future. NPJ Digit Med 2019; 2: 126.
New JP, Bakerly ND, Leather D, Woodcock A. Obtaining real-world evidence: the Salford Lung Study. Thorax 2014; 69(12): 1152-4.
van Staa TP, Dyson L, McCann G, et al. The opportunities and challenges of pragmatic point-of-care randomised trials using routinely collected electronic records: evaluations of two exemplar trials. Health technology assessment 2014; 18(43): 1-146.
Mc Cord KA, Hemkens LG. Using electronic health records for clinical trials: Where do we stand and where can we go? CMAJ 2019; 191(5): E128-E33.
Fitzpatrick T, Perrier L, Shakik S, et al. Assessment of Long-term Follow-up of Randomized Trial Participants by Linkage to Routinely Collected Data: A Scoping Review and Analysis. JAMA Netw Open 2018; 1(8): e186019.
Lai YS, Afseth JD. A review of the impact of utilising electronic medical records for clinical research recruitment. Clin Trials 2019; 16(2): 194-203.
Battersby C, Statnikov Y, Santhakumaran S, et al. The United Kingdom National Neonatal Research Database: A validation study. PLoS One 2018; 13(8): e0201815.
Mc Cord KA, Ewald H, Ladanie A, et al. Current use and costs of electronic health records for clinical trial research: a descriptive study. CMAJ Open 2019; 7(1): E23-E32.
Kwakkenbos L, Imran M, McCord KA, et al. Protocol for a scoping review to support development of a CONSORT extension for randomised controlled trials using cohorts and routinely collected health data. BMJ open 2018; 8(8): e025266.
Bhattacharya IS, Morden JP, Griffin C, et al. The Application and Feasibility of Using Routine Data Sources for Long-term Cancer Clinical Trial Follow-up. Clin Oncol (R Coll Radiol) 2017; 29(12): 796-8.
Lugg-Widger FV, Angel L, Cannings-John R, et al. Challenges in accessing routinely collected data from multiple providers in the UK for primary studies: Managing the morass. International Journal of Population Data Science 2018; 3(3).
Appleyard SE, Gilbert DC. Innovative Solutions for Clinical Trial Follow-up: Adding Value from Nationally Held UK Data. Clin Oncol (R Coll Radiol) 2017; 29(12): 789-95.
Powell GA, Bonnett LJ, Tudur-Smith C, Hughes DA, Williamson PR, Marson AG. Using routinely recorded data in the UK to assess outcomes in a randomised controlled trial: The Trials of Access. Trials 2017; 18(1): 389.
Lemanska A, Byford RC, Correa A, et al. Linking CHHiP prostate cancer RCT with GP records: A study proposal to investigate the effect of co-morbidities and medications on long-term symptoms and radiotherapy-related toxicity. Technical Innovations & Patient Support in Radiation Oncology 2017; 2: 5-12.
Wright-Hughes A, Graham E, Cottrell D, Farrin A (2018). Routine hospital data – is it good enough for trials? An example using England’s Hospital Episode Statistics in the SHIFT trial of Family Therapy vs. Treatment as Usual in adolescents following self-harm. Clin Trials 15(2):197-206
Are Routinely Collected NHS Administrative Records Suitable for Endpoint Identification in Clinical Trials? Evidence from the West of Scotland Coronary Prevention Study https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0075379
Morris TP, Jarvis CI, Cragg W, Phillips PPJ, Choodari-Oskooei B, Sydes MR. Proposals on Kaplan-Meier plots in medical research and a survey of stakeholder views: KMunicate. BMJ open 2019; 9(9): e030215.
Sydes MR, NASEM. Challenges and Disincentives for Sharing and Reuse of Data: Researcher Perspective. In: National Academy of Sciences Engineering And Medicine, ed. Reflections on Sharing Clinical Trial Data: Challenges and a Way Forward: Proceedings of a Workshop. Washington (DC): The National Academies Press; 2020: 76-81.
Lo B. Sharing clinical trial data: maximizing benefits, minimizing risk. JAMA : the journal of the American Medical Association 2015; 313(8): 793-4.
Davis ID. Challenges of data sharing: valuable but costly? The Lancet Oncology 2016.
Navar AM, Pencina MJ, Rymer JA, Louzao DM, Peterson ED. Use of Open Access Platforms for Clinical Trial Data. JAMA : the journal of the American Medical Association 2016; 315(12): 1283-4.
Taichman DB, Backus J, Baethge C, et al. Sharing clinical trial data: a proposal from the International Committee of Medical Journal Editors. The Lancet 2016.
Vickers AJ. Sharing raw data from clinical trials: what progress since we first asked "Whose data set is it anyway?". Trials 2016; 17(1): 227.
Dal-Ré R. Access to Anonymized Individual Participant Clinical Trials Data: A Radical Change of Mind by the Most Prestigious Medical Journals. Archivos de Bronconeumología (English Edition) 2017.
Mello MM, Lieou V, Goodman SN. Clinical Trial Participants' Views of the Risks and Benefits of Data Sharing. N Engl J Med 2018; 378(23): 2202-11.
Naudet F, Sakarovitch C, Janiaud P, et al. Data sharing and reanalysis of randomized controlled trials in leading biomedical journals with a full data sharing policy: survey of studies published in The BMJ and PLOS Medicine. BMJ 2018; 360: k400.