Patient Portals as a Means of Information and Communication Technology Support to Patient-Centric Care Coordination – the Missing Evidence and the Challenges of Evaluation

Michael Rigby; Andrew Georgiou; Hannele Hyppönen; Elske Ammenwerth; Nicolette de Keizer; Farah Magrabi; Philip Scott

doi:10.15265/IY-2015-007

Yearbook of Medical Informatics, Inhaltsverzeichnis

Yearb Med Inform 2015; 24(01): 148-159
DOI: 10.15265/IY-2015-007

Original Article

Georg Thieme Verlag KG Stuttgart

Patient Portals as a Means of Information and Communication Technology Support to Patient-Centric Care Coordination – the Missing Evidence and the Challenges of Evaluation

A joint contribution of IMIA WG EVAL and EFMI WG EVAL

Authors

Michael Rigby

¹Keele University, School of Public Policy and Professional Practice, Keele, United Kingdom
Andrew Georgiou

²Australian Institute of Health Innovation, Macquarie University, Sydney, Australia
Hannele Hyppönen

³National Institute for Health and Welfare, Information Department, Helsinki, Finland
Elske Ammenwerth

⁴UMIT, University for Health Sciences, Medical Informatics and Technology, Hall in Tyrol, Austria
Nicolette de Keizer

⁵Academic Medical Center, Department of Medical Informatics, Amsterdam, The Netherlands
Farah Magrabi

²Australian Institute of Health Innovation, Macquarie University, Sydney, Australia
Philip Scott

⁶School of Computing, University of Portsmouth, Portsmouth, United Kingdom

Abstract

Summary

Objectives: To review the potential contribution of Information and Communication Technology (ICT) to enable patient-centric and coordinated care, and in particular to explore the role of patient portals as a developing ICT tool, to assess the available evidence, and to describe the evaluation challenges.

Methods: Reviews of IMIA, EFMI, and other initiatives, together with literature reviews.

Results: We present the progression from care coordination to care integration, and from patient-centric to person-centric approaches. We describe the different roles of ICT as an enabler of the effective presentation of information as and when needed. We focus on the patient‘s role as a co-producer of health as well as the focus and purpose of care. We discuss the need for changing organisational processes as well as the current mixed evidence regarding patient portals as a logical tool, and the reasons for this dichotomy, together with the evaluation principles supported by theoretical frameworks so as to yield robust evidence.

Conclusions: There is expressed commitment to coordinated care and to putting the patient in the centre. However to achieve this, new interactive patient portals will be needed to enable peer communication by all stakeholders including patients and professionals. Few portals capable of this exist to date. The evaluation of these portals as enablers of system change, rather than as simple windows into electronic records, is at an early stage and novel evaluation approaches are needed.

Keywords

Patient-centred care - care coordination - patient portals - evidence - evaluation

Volltext

Referenzen

References
1 De Silva D. Helping measure person-centred care. A review of evidence about commonly used approaches and tools used to help measure person-centred care. The Health Foundation. Evidence Review; March 2014. Available at www.health.org.uk/public/cms/75/76/313/4697/Helping%20measure%20person-centred%20care.pdf?realName=Lnl7Fn.pdf (accessed 19 December 2014).
2 Health Foundation.. Person-centred Care Made Simple – what everyone should know about person centred care. London: Health Foundation; October 2014. Available at http://www.health.org.uk/public/cms/75/76/313/5061/Person-centred%20care%20made%20simple.pdf?realName=dvORCq.pdf (Accessed 19 December 2014).
3 Kodner DL. All together now: a conceptual exploration of integrated care. Healthc Q 2009; Oct 13 Spec No: 6-15.
4 Kodner DL, Spreeuwenberg C. Integrated care: meaning, logic, applications, and implications-a discussion paper. Int J Integr Care 2002; 2: e12. Available from: URN:NBN:NL:UI:10-1-100309 (accessed 9 December 2014).
5 Goodwin N. Understanding Integrated Care: a complex process, a fundamental principle. Int J Integr Care 2013; 13: e011. Available from: URN:NBN:NL:UI:10-1-114416.
6 Finset A. Research on person-centred clinical care. J Eval Clin Pract 2011; Apr 17 (02) 384-6.
7 Olsson LE, Jakobsson Ung E, Swedberg K, Ekman I. Efficacy of person-centred care as an intervention in controlled trials - a systematic review. J Clin Nurs 2013; Feb 22 3-4 456-65.
8 Hippocrates The Art. Greece: c2500 BC.;
9 Tsiompanou E, Marketos SG. Hippocrates: timeless still. J R Soc Med 2013; 106: 288-92.
10 Rigby M. The Core Vision of Person-Centred Care in a Modern Information-Based Society. In: Meyer I, Müller S, Kubitschke L. Achieving Effective Integrated E-Care Beyond the Silos. Hershey PA: IGI Global; 2014. p. 1-21. ISBN: 978-1-4666-6138-7.
11 McDonald KM, Schultz E, Albin L, Pineda N, Lonhart J, Sundaram V. et al. Care Coordination Measures Atlas Update June 2014. U.S. Department of Health & Human Services. Washington DC: Agency for Healthcare Research and Quality; 2014. Available at http://www.ahrq.gov/professionals/prevention-chronic-care/improve/coordination/atlas2014/index.html (accessed 19 December 2014).
12 Wagner EH. Care for chronic diseases. The efficacy of coordinated and patient centred care is established, but now is the time to test its effectiveness. BMJ Oct 26, 2002; 325 7370 913-4.
13 Chronic diseases and health promotion.. WHO global report. http://www.who.int/chp/chronic_disease_report/part1/en/index4.html (accessed 19 December 2014).
14 Bodenheimer T, Wagner EH, Grumbach K. Improving primary care for patients with chronic illness. JAMA 2002; 288: 1775-9.
15 Weingarten SR, Henning JM, Badamgarav E, Knight K, Hasselblad V, Gano A. et al. Interventions used in disease management programmes for patients with chronic illness—which ones work? Meta-analysis of published reports. BMJ 2002; 325: 925-8.
16 Conference Board of Canada.. Valuing Time Saved. Assessing the Impact of Patient Time Saved from the Adoption of Consumer Health Solutions. The Conference Board of Canada; September 19, 2012
17 Canada Health Infoway.. The emerging benefits of electronic medical record use in community-based care. A study commissioned by Canada Health Infoway; April 2013
18 Tornbjerg K, Bertelsen P. Undersøgelse af borg-ernes anvendelse af sundheds-it i 2013 - en udforskning af danskernes kendskab, holdninger og forhold til it, til gavn for eget helbred. Dansk Center for Sundhedsinformatik, DaCHI. Aalborg University; March 2014. Available from www.dachi.aau.dk/digitalAssets/85/85883_14_2_undersoegelse_af_borgernes_anvendelse_af_sundheds-it_i_2013.pdf (accessed 19 December 2014)
19 Hyppönen H, Hyry J, Valta K, Kyrki A. Sosiaali- ja terveydenhuollon sähköinen asiointi – kansalaisten kokemukset ja tarpeet. [Electronic services for citizens in Social and health care – use, experiences and needs]. Report x/2014. Helsinke, Finland: National Institute for Health and Welfare.; (in press)
20 Cooper AF. Whose illness is it anyway? Why patient perceptions matter. Int J Clin Pract 1998; 52 (08) 551-6.
21 Nettleton S, Hanlon G. ‘Pathways to the Doctor’ in the Information Age: the Role of ICTs. In: Webster A. Contemporary Lay Referral Systems. New Technologies in Health Care Challenge, Change and Innovation. Hampshire: Palgrave Macmillan; 2006. p. 57-70.
22 Department of Health.. The expert patient: a new approach to chronic disease management in the 21st century. London: Stationery Office; 2001
23 http://www.nhs.uk/NHSEngland/AboutNHSservices/doctors/Pages/expert-patients-programme.aspx (accessed 19 December 2014).
24 http://www.selfmanagementuk.org/services/programmes (accessed 19 December 2014)
25 Chewning B, Bylund CL, Shah B, Arora NK, Gueguen JA, Makoul G. Patient preferences for shared decisions: a systematic review. Patient Educ Couns 2012; 86 (01) 9-18.
26 Murphy DR, Singh H, Berlin L. Communication breakdowns and diagnostic errors: a radiology perspective. Diagnosis 2014; 1 (04) 253-61.
27 Arnold CW, McNamara M, El-Saden S, Chen S, Taira RK, Bui AAT. Imaging informatics for consumer health: towards a radiology patient portal. J Am Med Inform Assoc 2013; 20 (06) 1028-36.
28 Stevenson FA, Cox K, Britten N, Dundar Y. A systematic review of the research on communication between patients and health care professionals about medicines: the consequences for concordance. Health Expect 2014; 7 (03) 235-45.
29 Alston C, Berger ZD, Brownlee S, Elwyn G, Fowler Jr. FJ, Hall LK. et al. Shared Decision Making Strategies for Best Care: Patient Decision Aids. 2014
30 Blobel B. Onconet: a secure infrastructure to improve cancer patients’ care. Eur J Med Res 2000; Aug 18 5 (08) 360-8.
31 Baldry M, Cheal C, Fisher B, Gillett M, Huet V. Giving patients their own records in general practice: experience of patients and staff. Br Med J 1986; Mar 1 292 6520 596-8.
32 Honeyman A, Cox B, Fisher B. Potential impacts of patient access to their electronic care records. Inform Prim Care 2005; 13 (01) 55-60.
33 Fisher B, Fitton R, Poirier C, Stables D. Patient record access--the time has come. Stud Health Technol Inform 2006; 121: 162-7.
34 Fisher B, Fitton R, Poirier C, Stables D. Patient record access--the time has come!. Br J Gen Pract 2007; Jun; 57 (539) 507-11.
35 http://www.paers.net/index.shtml (accessed 19 December 2014)
36 Ammenwerth E, Schnell-Inderst P, Hoerbst A. The Impact of Electronic Patient Portals on Patient Care: A Systematic Review of Controlled Trials. J Med Internet Res 2012; 14 (06) e162. doi:10.2196/ jmir.2238].
37 Bourgeois FC, Mandl KD, Shaw D, Flemming D, Nigrin DJ. Mychildren’s: integration of a personally controlled health record with a tethered patient portal for a pediatric and adolescent population. AMIA Annu Symp Proc 2009; 2009: 65-69.
38 Institute of Medicine.. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington: National Academy Press; 2001
39 Giardina TD, Singh H. Should patients get direct access to their laboratory test results?: An answer with many questions. JAMA 2011; 306 (22) 2502-3.
40 Feeley TW, and Shine KI. Access to the medical record for patients and involved providers: transparency through electronic tools. Ann Intern Med 2011; 155 (12) 853-4.
41 Day K, Bain C. Opening medical records for patients - A limited literature review. PULSE IT 2014; 40-3.
42 McDonald KM, Bryce CL, Graber ML. The patient is in: patient involvement strategies for diagnostic error mitigation. BMJ Quality & Safety 2013; 22 (Suppl. 02) ii33-ii39.
43 Markle Foundation.. Connecting for Health - A Public-Private Collaborative. 2003. The Personal Health Working Group - Final Report. Available from http://www.providersedge.com/ehdocs/ehr_articles/The_Personal_Health_Work-ing_Group_Final_Report.pdf [accessed 19 November 2014].
44 Kaelber DC, Jha AK, Johnston D, Middleton B, Bates DW. A research agenda for personal health records (PHRs). J Am Med Inform Assoc 2008; Dec 15 (06) 729-36.
45 Microsoft Health Vault. URL: https://www.health-vault.com/au/en. (accessed 19 December 2014).
46 Apple Health. URL: https://www.apple.com/au/ios/whats-new/health/. (accessed 19 December 2014)
47 Weingart SN, Rind D, Tofias Z, Sands DZ. Who uses the patient internet portal? The PatientSite experience. J Am Med Inform Assoc 2006; JanFeb 13 (01) 91-5.
48 Kaiser Permanente Annual Report. 2013 share.kaiserpermanente.org/static/kp_annualreport_2013/?kp_shortcut_referrer=kp.org/annualreport#executive-letter (accessed 9 December 2014).
49 https://www.sundhed.dk/service/english/about-the-ehealth-portal/background/ (accessed 10 December 2014).
50 Peterson ME. Patients access to their health data on the Danish national e-health portal. http://www.ehfg.org/fileadmin/ehfg/Website/Archiv/2011/Presentations/W8/W8-Petersen.pdf
51 Greenhalgh T, Stramer K, Bratan T, Byrne E, Russell J, Hinder S. et al. The Devil’s in the Detail: Final report of the independent evaluation of the Summary Care Record and Health Space programmes. London: University College London; 2010
52 http://www.ehealth.gov.au (accessed 20 December 2014).
53 Dearne K. An analysis of Commonwealth Government annual reports covering e-health and PCEHR activities in 2013-14. Consumers e-Health Alliance; http://ceha.org.au/wp-content/uploads/2014/12/AnalysisPCEHR-Final.pdf (accessed 20 December 2014).
54 Greenhalgh T, Hinder S, Stramer K, Bratan T, Russell J. Adoption, non-adoption, and abandonment of a personal electronic health record: case study of HealthSpace. BMJ 2010; Dec 20 341: c7219.
55 Patient Online, NHS England, 2014.. www.england.nhs.uk/ourwork/pe/patient-online. (accessed 20 December 2014)
56 Hannan A. Providing patients online access to their primary care computerised medical records: a case study of sharing and caring. Inform Prim Care 2010; 18: 41-9.
57 Barbarito F, Pinciroli F, Barone A, Pizzo F, Ranza R, Mason J. et al. Implementing the lifelong personal health record in a regionalised health information system: The case of Lombardy, Italy. Comput Biol Med 2013 Nov 4. pii: S0010-4825(13)00308-9. doi:10.1016/j.compbiomed.2013.10.021. [Epub ahead of print].
58 Hyppönen H. Sosiaali- ja terveydenhhollon sähköinen asiointi. Kansalaisten kokemukset ja tarpeet. [Electronic services in the social welfare and health care sector – experiences and needs of people with chronic illnesses] (in Finnish). Finnish Journal of eHealth and eWelfare (FinJeHeW) 2015; 7 2-3 88-1033.
59 Phelps RG, Taylor J, Simpson K, Samuel J, Turner AN. Patients’ Continuing Use of an Online Health Record: A Quantitative Evaluation of 14,000 Patient Years of Access Data. J Med Internet Res 2014; 16 (10) e241.
60 Mukoro F. Renal Patient View: A system which provides patients online access to their test results. Final evaluation report. NHS Kidney Care; 2012
61 Yamin CK, Emani S, Williams DH, Lipsitz SR, Karson AS, Wald JS. et al. The digital divide in adoption and use of a personal health record. Arch Intern Med 2011; Mar 28 171 (06) 568-74.
62 de Lusignan S, Ross P, Shifrin M, Hercigonja-Szekeres M, Seroussi B. A comparison of approaches to providing patients access to summary care records across old and new Europe: an exploration of facilitators and barriers to implementation. Stud Health Technol Inform 2013; 192: 397-401.
63 Goldzweig CL, Orshansky G, Paige NM, Towfigh AA, Haggstrom DA, Miake-Lye I. et al. Electronic patient portals: evidence on health outcomes, satisfaction, efficiency, and attitudes: a systematic review. Ann Intern Med 2013; 159 (10) 677-87.
64 Davis Giardina T, Menon S, Parrish DE, Sittig DF, Singh H. Patient access to medical records nd healthcare outcomes: a systematic review. J Am Med Inform Assoc 2014; 21: 737-41.
65 Rigby M, Koch S, Keeling D, Hill P. Developing a New Understanding of Enabling Health and Well-being in Europe – Harmonising Health and Social Care Delivery and Informatics Support to Ensure Holistic Care; European Science Foundation, Strasbourg; 2013. available on http://www.esf.org/fileadmin/Public_documents/Publications/Health_Wellbeing_Europe.pdf">www.esf.org/fileadmin/Public_documents/Publications/Health_Wellbeing_Europe.pdf.
66 Showell C, Turner P. The PLU problem: are we designing personal ehealth for people like us?. Stud Health Technol Inform 2013; 183: 276-80.
67 Clarke A. Evidence-Based Evaluation in Different Professional Domains: Similarities, Differences and Challenges. In: Shaw IF, Greene JC, Mark MM. editors. Handbook of Evaluation: Policies, Programs and Practices. London: Sage; 2006. p. 559-81.
68 Organisation for Economic Co-operation Development.. OECD Guide to Measuring the Information Society. 2011. OECD; Paris: 2011
69 Menou MJ, Taylor RD. A “Grand Challenge”: Measuring Information Societies. The Inform Soc 2006; 22 (05) 261-7.
70 Otte-Trojel T, de Bont A, Rundall TG, van de Klundert J. How outcomes are achieved through patient portals: a realist review. J Am Med Inform Assoc 2014; Jul-Aug; 21 (04) 751-7.
71 Scott PJ, Brown A, Friedman C, Wyatt J, Georgiou A, Eisenstein E. Improving the Science of Health Informatics by using Validated Instruments and Outcome Measures. Workshop presented at Medical Informatics Europe 2014. Istanbul.:
72 Hyppönen H. eHealth services and technology: challenges for co-development. Human technology 2007; 3 (02) 188-213.
73 Pawson R. Evidence-Based Policy. A Realist Perspective. Sage; 1996
74 Wong G, Greenhalgh T, Westhorp G, Pawson R. RAMESES publication standards: realist syntheses. BMC Med 2013; 11: 21.
75 Nykänen P, Brender J, Talmon J, de Keizer N, Rigby M, Beuscart-Zephir M-C. et al. Guideline for good evaluation practice in health informatics (GEP-HI). Int J Med Inform 2011: 815-27.
76 http://www.merriam-webster.com/thesaurus/context?show=0&t=1416901024
77 EUnetHTA Joint Action 2, Work Package 8.. HTA Core Model ® version 2.1 PUBLIC DRAFT 23 (Pdf); 2014. Available from http://www.corehta. info/BrowseModel.aspx.
78 Hyppönen H, Viitanen J, Reponen J, Doupi P, Jormanainen V, Lääveri T. et al. Large-scale eHealth Systems: Providing Information to Support Evidence-based Management. eTELEMED 2011: The Third International Conference on eHealth, Telemedicine, and Social Medicine. IARIA; 2011
79 Hyppönen H. eHealth Services and Technology : Challenges for Co-Development. Human Technology 2007; (02) 188-213.
80 Leonardi P, Barley S. Materiality and change: Challenges to building better theory about technology and organizing. Information and Organization 2008; 18 (03) 159-76
81 Engeström Y, Reijo Miettinen R, Punamäki R-L. (Editors). Perspectives on Activity Theory (Learning in Doing: Social, Cognitive and Computational Perspectives). Cambridge, UK: University Press; 1999
82 Bodenheimer T, Lorig K, Holman H, Grum-bach K. Patient self-management of chronic disease in primary care. JAMA 2002; Nov 20 288 (19) 2469-75.
83 Rimer B, Glanz K. Theory at a glance.. Washington DC: National Cancer Institute; 2005
84 Godin G, Belanger-Gravel A, Eccles M, Grim-shaw J. Healthcare professionals’ intentions and behaviours: a systematic review of studies based on social cognitive theories. Implement Sci 2008; 3: 36.
85 Al-Lozi E, Papazafeiropoulou A. Intention-Based Models: The Theory of Planned Behavior Within the Context of IS. In: Dwivedi YK, Wade MR, Schneberger SL. editors. Information Systems Theory, Vol. 29. New York: Springer; 2012. p. 219-39.
86 Ajzen I. TPB Diagram.;. 2006 Retrieved 11 December, 2014, from http://people.umass.edu aizen/tpb.diag.html
87 Triandis H. Values, attitudes, and interpersonal behavior. In: Page M, Lincoln N. editors. Nebraska Symposium on Motivation, Vol. 27. University of Nebraska Press; 1980. p. 195-259.
88 Daneault S, Beaudry M, Godin G. Psychosocial determinants of the intention of nurses and dietitians to recommend breastfeeding. Can J Public Health 2004; 95 (02) 151-4.
89 Viitanen J, Hyppönen H, Lääveri T, Vänskä J, Reponen J, Winblad I. National questionnaire study on clinical ICT systems proofs: physicians suffer from poor usability. Int J Med Inform 2011; 80 (10) 708-25.
90 de Lusignan S, Mold F, Sheikh A, Majeed A, Wyatt JC, Quinn T. et al. Patients’ online access to their electronic health records and linked online services: a systematic interpretative review. BMJ Open 2014; Sep 8 4 (09) e006021.
91 Chewning B, Bylund CL, Shah B, Arora NK, Gueguen JA, Makoul G. Patient preferences for shared decisions: a systematic review. Patient Educ Couns 2012; 86 (01) 9-18.
92 Stacey D, Bennett CL, Barry MJ, Col NF, Eden KB, Holmes-Rovner M. et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev 2011 10(10).
93 Rigby M, Ammenwerth E, Beuscart-Zephir M-C, Brender J, Hyppönen H, Melia S. et al. Evidence Based Health Informatics: 10 Years of Efforts to Promote the Principle - Joint Contribution of IMIA WG EVAL and EFMI WG, EVAL. Yearb Med Inform 2013; 34-46.