title: Patients at the centre: methodological considerations for evaluating evidence from health interventions involving patients use of web-based information systems.
abstract: Building an evidence base for healthcare interventions has long been advocated as both professionally and ethically desirable. By supporting meaningful comparison amongst different approaches, a good evidence base has been viewed as an important element in optimising clinical decision-making and the safety and quality of care. Unsurprisingly, medical research has put considerable effort into supporting the development of this evidence base, and the randomised controlled trial has become the dominant methodology. Recently however, a body of research has begun to question, not just this methodology per se, but also the extent to which the evidence it produces may marginalise individual patient experiences, priorities and perceptions.Simultaneously, the widespread adoption and utilisation of information systems (IS) in health care has also prompted initiatives to develop a stronger base of evidence about their impacts. These calls have been stimulated both by numerous system failures and research expressing concerns about the limitations of information systems methodologies in health care environments. Alongside the potential of information systems to produce positive, negative and unintended consequences, many measures of success, impact or benefit appear to have little to do with improvements in care, health outcomes or individual patient experiences.Combined these methodological concerns suggest the need for more detailed examination. This is particularly the case, given the prevalence within contemporary clinical and IS discourses on health interventions advocating the need to put the 'patient at the centre' by engaging them in their own care and/or 'empowering' them through the use of information systems.This paper aims to contribute to these on-going debates by focusing on the socio-technical processes by which patients' interests and outcomes are measured, defined and evaluated within health interventions that involve them using web-based information systems. The paper outlines an integrated approach that aims to generate evidence about the impact of these types of health interventions that are meaningful at both individual patient and patient cohort levels.
authors: eHealth Services Research Group, School of Computing and Information Systems, University of Tasmania, Hobart, Australia.
authors: Elizabeth
authors: E
authors: Cummings
authors: Paul
authors: P
authors: Turner
references: Can J Nurs Res. 2007 Mar;39(1):116-34
references: 17450708
references: Qual Manag Health Care. 2005 Oct-Dec;14(4):206-16
references: 16227864
references: Am Fam Physician. 2005 Oct 15;72(8):1503-10
references: 16273817
references: BMJ. 2004 May 15;328(7449):1143-4
references: 15142890
references: Health Informatics J. 2006 Mar;12(1):27-39
references: 17023396
references: Int J Prosthodont. 2006 Mar-Apr;19(2):126-8
references: 16602356
references: Int J Med Inform. 2009 Jan;78(1):1-9
references: 18930696
references: Perspect Biol Med. 2005 Autumn;48(4):516-34
references: 16227664
references: J Am Med Inform Assoc. 2007 Sep-Oct;14(5):542-9
references: 17600093
references: Methods Inf Med. 2003;42(4):458-62
references: 14534650
references: BMJ. 2004 Oct 30;329(7473):988-9
references: 15514318
references: BMJ. 2004 May 15;328(7449):1150
references: 15142895
references: Lancet. 2004 Oct 23-29;364(9444):1467-8
references: 15500873
references: Perspect Biol Med. 2005 Autumn;48(4):502-15
references: 16227663
references: J Clin Nurs. 2008 Nov;17(11c):370-9
references: 18557963
references: Perspect Biol Med. 2005 Autumn;48(4):490-501
references: 16227662
references: Int J Evid Based Healthc. 2006 Sep;4(3):180-6
references: 21631765
references: Chron Respir Dis. 2006;3(1):19-27
references: 16509174
references: Comput Biol Med. 2002 May;32(3):141-9
references: 11922931
references: Stud Health Technol Inform. 2009;143:229-34
references: 19380941
references: BMJ. 1998 Jun 27;316(7149):1959-61
references: 9641938
references: Med Care. 1989 Mar;27(3 Suppl):S178-89
references: 2646488
references: BMJ. 2004 May 15;328(7449):1197-9
references: 15142933
references: JAMA. 2001 Nov 28;286(20):2578-85
references: 11722272
references: JAMA. 2006 May 17;295(19):2270-4
references: 16705108
references: Med Inform Internet Med. 2007 Dec;32(4):305-14
references: 18072007
references: Lancet. 2007 Feb 24;369(9562):698-700
references: 17321316
references: Stud Health Technol Inform. 2007;130:3-12
references: 17917176
references: J Med Internet Res. 2005 Mar 31;7(1):e9
references: 15829481
references: Ann Allergy Asthma Immunol. 2007 Jun;98(6):507-16; quiz 516, 566
references: 17601262
references: Am J Prev Med. 2007 May;32(5 Suppl):S119-26
references: 17466816
references: Eval Health Prof. 2003 Mar;26(1):73-85
references: 12629923
references: Perspect Biol Med. 2005 Autumn;48(4):535-47
references: 16227665
references: Med Care. 2001 Nov;39(11):1217-23
references: 11606875