Literature DB >> 19299260

Feasibility and cost of obtaining informed consent for essential review of medical records in large-scale health services research.

Sian Noble1, Jenny Donovan, Emma Turner, Chris Metcalfe, Athene Lane, Mari-Anne Rowlands, David Neal, Freddie Hamdy, Yoav Ben-Shlomo, Richard Martin.   

Abstract

OBJECTIVE: To evaluate the effectiveness and cost of obtaining consent for review of medical records within the passively observed non-intervention arm of a cluster randomized controlled trial, 'Comparison Arm for ProtecT'.
METHODS: Two hundred and thirty men, who had been notified to the trial by cancer registries as having prostate cancer, were sent a consent form from their general practitioner or secondary care clinician. The consent rate of participants to the review of their medical records and the estimated costs of the process were evaluated.
RESULTS: One hundred and seventy-nine men (84%: 95% CI = 78%, 89%) consented to have their medical notes reviewed at an estimated cost of pound123 (euro172, $248) per person.
CONCLUSIONS: A high consent rate for review of medical notes is achievable but at a cost. There needs to be renewed debate about the automatic need for consent to review medical records where the chance of personal harm is negligible and the purpose of the review is to provide robust evidence to save lives, prevent needless suffering, and improve the effectiveness and efficiency of health care delivery.

Entities:  

Mesh:

Year:  2009        PMID: 19299260     DOI: 10.1258/jhsrp.2008.008085

Source DB:  PubMed          Journal:  J Health Serv Res Policy        ISSN: 1355-8196


  7 in total

1.  International guidelines on biobank research leave researchers in ambiguity: why is this so?

Authors:  Joanna Stjernschantz Forsberg; Mats G Hansson; Kathinka Evers
Journal:  Eur J Epidemiol       Date:  2013-06-06       Impact factor: 8.082

2.  Ethical and practical challenges to studying patients who opt out of large-scale biorepository research.

Authors:  S Trent Rosenbloom; Jennifer L Madison; Kyle B Brothers; Erica A Bowton; Ellen Wright Clayton; Bradley A Malin; Dan M Roden; Jill Pulley
Journal:  J Am Med Inform Assoc       Date:  2013-07-25       Impact factor: 4.497

Review 3.  Using electronic health records to drive discovery in disease genomics.

Authors:  Isaac S Kohane
Journal:  Nat Rev Genet       Date:  2011-05-18       Impact factor: 53.242

Review 4.  Mining electronic health records: towards better research applications and clinical care.

Authors:  Peter B Jensen; Lars J Jensen; Søren Brunak
Journal:  Nat Rev Genet       Date:  2012-05-02       Impact factor: 53.242

5.  Active monitoring, radical prostatectomy and radical radiotherapy in PSA-detected clinically localised prostate cancer: the ProtecT three-arm RCT.

Authors:  Freddie C Hamdy; Jenny L Donovan; J Athene Lane; Malcolm Mason; Chris Metcalfe; Peter Holding; Julia Wade; Sian Noble; Kirsty Garfield; Grace Young; Michael Davis; Tim J Peters; Emma L Turner; Richard M Martin; Jon Oxley; Mary Robinson; John Staffurth; Eleanor Walsh; Jane Blazeby; Richard Bryant; Prasad Bollina; James Catto; Andrew Doble; Alan Doherty; David Gillatt; Vincent Gnanapragasam; Owen Hughes; Roger Kockelbergh; Howard Kynaston; Alan Paul; Edgar Paez; Philip Powell; Stephen Prescott; Derek Rosario; Edward Rowe; David Neal
Journal:  Health Technol Assess       Date:  2020-08       Impact factor: 4.014

6.  Attitudes towards the collection and linkage of maltreatment data for research: A qualitative study.

Authors:  Gwenllian Moody; Rebecca Cannings-John; Kerenza Hood; Michael Robling
Journal:  Int J Popul Data Sci       Date:  2022-01-26

Review 7.  "Let's get the best quality research we can": public awareness and acceptance of consent to use existing data in health research: a systematic review and qualitative study.

Authors:  Elizabeth M Hill; Emma L Turner; Richard M Martin; Jenny L Donovan
Journal:  BMC Med Res Methodol       Date:  2013-06-04       Impact factor: 4.615

  7 in total

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