Literature DB >> 11042920

What proportion of patients refuse consent to data collection from their records for research purposes?

R Baker1, C Shiels, K Stevenson, R Fraser, M Stone.   

Abstract

In a randomised trial of the implementation of guidelines for asthma and angina, we sent questionnaires that included a request for consent to collect data from the patient's clinical records to 5069 patients in 81 general practices. Of these 3429 (67.6%) responded, of whom 335 (9.8% [95%, CI = 8.8%-10.8%]) refused consent. We conclude that consent should always be sought unless a research ethics committee has waived this requirement for pressing reasons.

Entities:  

Keywords:  Biomedical and Behavioral Research; Empirical Approach

Mesh:

Year:  2000        PMID: 11042920      PMCID: PMC1313779     

Source DB:  PubMed          Journal:  Br J Gen Pract        ISSN: 0960-1643            Impact factor:   5.386


  4 in total

1.  Court sanctions use of anonymised patient data

Authors: 
Journal:  BMJ       Date:  2000-01-08

2.  Informed consent in medical research. Journals should not publish research to which patients have not given fully informed consent--with three exceptions.

Authors:  L Doyal
Journal:  BMJ       Date:  1997-04-12

3.  Development of a symptom based outcome measure for asthma.

Authors:  N Steen; A Hutchinson; E McColl; M P Eccles; J Hewison; K A Meadows; S M Blades; P Fowler
Journal:  BMJ       Date:  1994-10-22

4.  Development and evaluation of the Seattle Angina Questionnaire: a new functional status measure for coronary artery disease.

Authors:  J A Spertus; J A Winder; T A Dewhurst; R A Deyo; J Prodzinski; M McDonell; S D Fihn
Journal:  J Am Coll Cardiol       Date:  1995-02       Impact factor: 24.094

  4 in total
  15 in total

1.  Public opinions about participating in health research.

Authors:  Kay Teschke; Suhail Marino; Rong Chu; Joseph K C Tsui; M Anne Harris; Stephen A Marion
Journal:  Can J Public Health       Date:  2010 Mar-Apr

2.  Extracting information from hospital records: what patients think about consent.

Authors:  Bruce Campbell; Helen Thomson; Jessica Slater; Colin Coward; Katrina Wyatt; Kieran Sweeney
Journal:  Qual Saf Health Care       Date:  2007-12

3.  Joint replacement recipients' views about health information privacy.

Authors:  Amanda L Terry; Bert M Chesworth; Robert B Bourne; Paul Stolee; Mark Speechley
Journal:  Health Expect       Date:  2013-10-01       Impact factor: 3.377

4.  Sharing patient data: competing demands of privacy, trust and research in primary care.

Authors:  Margaret A Stone; Sarah A Redsell; Jennifer T Ling; Alastair D Hay
Journal:  Br J Gen Pract       Date:  2005-10       Impact factor: 5.386

5.  Do income questions and seeking consent to link medical records reduce survey response rates? A randomised controlled trial among older people.

Authors:  S Shah; T J Harris; E Rink; S DeWilde; C R Victor; D G Cook
Journal:  Br J Gen Pract       Date:  2001-03       Impact factor: 5.386

6.  Public opinion about the importance of privacy in biobank research.

Authors:  David J Kaufman; Juli Murphy-Bollinger; Joan Scott; Kathy L Hudson
Journal:  Am J Hum Genet       Date:  2009-10-29       Impact factor: 11.025

7.  Public attitudes towards the use of primary care patient record data in medical research without consent: a qualitative study.

Authors:  M R Robling; K Hood; H Houston; R Pill; J Fay; H M Evans
Journal:  J Med Ethics       Date:  2004-02       Impact factor: 2.903

8.  LINKING SURVEY AND ADMINISTRATIVE RECORDS: MECHANISMS OF CONSENT.

Authors:  Joseph W Sakshaug; Mick P Couper; Mary Beth Ofstedal; David R Weir
Journal:  Sociol Methods Res       Date:  2012-11

9.  Selection bias resulting from the requirement for prior consent in observational research: a community cohort of people with ischaemic heart disease.

Authors:  Brian Buckley; Andrew W Murphy; Molly Byrne; Liam Glynn
Journal:  Heart       Date:  2007-05-13       Impact factor: 5.994

Review 10.  "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

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