Subscribe to RSS
![](/products/assets/desktop/img/oa-logo.png)
DOI: 10.1055/s-0038-1641194
The Safe and Effective Use of Shared Data Underpinned by Stakeholder Engagement and Evaluation Practice
A Position Paper from the IMIA Technology Assessment & Quality Development in Health Informatics Working Group and EFMI Working Group for Assessment of Health Information SystemsPublication History
Publication Date:
22 April 2018 (online)
![](https://www.thieme-connect.de/media/10.1055-s-00034612/201801/lookinside/thumbnails/10-1055-s-0038-1641194_georgiou-1.jpg)
Summary
Objectives: The paper draws attention to: i) key considerations involving the confidentiality, privacy, and security of shared data; and ii) the requirements needed to build collaborative arrangements encompassing all stakeholders with the goal of ensuring safe, secure, and quality use of shared data.
Method: A narrative review of existing research and policy approaches along with expert perspectives drawn from the International Medical Informatics Association (IMIA) Working Group on Technology Assessment and Quality Development in Health Care and the European Federation for Medical Informatics (EFMI) Working Group for Assessment of Health Information Systems.
Results: The technological ability to merge, link, re-use, and exchange data has outpaced the establishment of policies, procedures, and processes to monitor the ethics and legality of shared use of data. Questions remain about how to guarantee the security of shared data, and how to establish and maintain public trust across large-scale shared data enterprises. This paper identifies the importance of data governance frameworks (incorporating engagement with all stakeholders) to underpin the management of the ethics and legality of shared data use. The paper also provides some key considerations for the establishment of national approaches and measures to monitor compliance with best practice.
Conclusion: Data sharing endeavours can help to underpin new collaborative models of health care which provide shared information, engagement, and accountability amongst all stakeholders. We believe that commitment to rigorous evaluation and stakeholder engagement will be critical to delivering health data benefits and the establishment of collaborative models of health care into the future.
-
References
- 1 Andreu-Perez J, Poon CC, Merrifield RD, Wong ST, Yang GZ. Big data for health. IEEE J Biomed Health Inform 2015; 19 (04) 1193-208
- 2 Chen H, Chiang RH, Storey VC. Business intelligence and analytics: From big data to big impact. MIS Q 2012 36(4):
- 3 Bureau of Health Information. Data Matters Linking data to unlock information. The use of linked data in healthcare performance assessment. Sydney, NSW: Bureau of Health Information; 2015
- 4 Productivity Commission. Data Availability and Use: Overview and Recommendations. Report no 82. Canberra, Australia: Commonwealth of Australia; 2017
- 5 Rigby M, Ronchi E. OECD-NSF Workshop: Building a Smarter Health and Wellness Future 15-16 February 2011. Summary Of Key Messages; Available on http://www.oecd.org/dataoecd/19/23/48915787.pdf . Accessed 20 November 2017. Paris: OECD
- 6 Friedman C, Rigby M. Conceptualising and creating a global learning health system. Int J Med Inform 2013; 82 (04) e63-e71
- 7 Coiera E. Guide to Health Informatics (Third Edition). Florida, USA: CRC Press; 2015
- 8 Safran C, Bloomrosen M, Hammond WE, Labkoff S, Markel-Fox S, Tang PC. , et al. Toward a national framework for the secondary use of health data: an American Medical Informatics Association White Paper. J Am Med Inform Assoc 2007; 14 (01) 1-9
- 9 Gordon WJ, Fairhall A, Landman A. Threats to Information Security-Public Health mplications. New Engl J Med 2017; 377 (08) 707-9
- 10 Armstrong S. Data, data everywhere: the challenges of personalised medicine. BMJ 2017; 359: j4546
- 11 Rigby M, Georgiou A, Hyppönen H, Ammenwerth E, de Keizer N, Magrabi F. , et al. Patient portals as a means of information and communication technology support to patient-centric care coordination - the missing evidence and the challenges of evaluation. Yearb Med Inform 2015; 148-5
- 12 Ammenwerth E. Evidence-based Health Informatics: How do we know what we know?. Methods Inf Med 2015; 54
- 13 Sheikh A, Atun R, Bates DW. The need for independent evaluations of government-led health information technology initiatives. BMJ Qual Saf 2014; 8: 611-3
- 14 Nykänen P, Brender J, Talmon J, 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; 80 (12) 815-27
- 15 Talmon J, Ammenwerth E, Brender J, de Keizer N, Nykänen P, Rigby M. STARE-HI--Statement on reporting of evaluation studies in Health Informatics. Int J Med Inform 2009; 78 (01) 1-9
- 16 Scott P, Rigby M, Ammenwerth E, McNair JB, Georgiou A, Hyppönen H. , et al. Evaluation Considerations for Secondary Uses of Clinical Data: Principles for an Evidence-based Approach to Policy and Implementation of Secondary Analysis. Yearb Med Inform 2017; 59-67
- 17 Kelly G, McKenzie B. Security, privacy, and confidentiality issues on the Internet. Jo Med Internet Res 2002 4(2).
- 18 Institute of Medicine. Beyond the HIPAA Privacy Rule: Enhancing Privancey, Improving Health Through Research. Washington DC, USA: The National Academies Press; 2009
- 19 Organisation for Economic Co-operation and Development (OECD). New Health Technologies: Managing Access, Value and Sustainability. Paris, France: OECD Publishing; 2017
- 20 Hordern A, Georgiou A, Whetton S, Prgomet M. Consumer eHealth - an overview of the research evidence and the implications for future policy. Health Inf Manag 2011; 40 (02) 6-14
- 21 Hemsley B, McCarthy S, Adams N, Georgiou A, Hill S, Balandin S. Legal, ethical, and rights issues in the adoption and use of the "My Health Record" by people with communication disability in Australia. J Intellect Dev Disabil 2017; 1-9
- 22 Alston C, Berger ZD, Brownlee S, Elwyn G, Fowler JFJ, Kelly LK. , et al. Shared Decision Making Strategies for Best Care: Patient Decision Aids. Discussion Paper. Available at: https://nam.edu/perspectives-2014-shared-decision-makingstrategies-for-best-care-patient-decision-aids/ . Accessed: 22 November 2017. 2014, Washington, DC.: Institute of Medicine.
- 23 Aicardi C, Del Savio L, Dove ES, Lucivero F, Tempini N, Prainsack B. Emerging ethical issues regarding digital health data. On the World Medical Association Draft Declaration on Ethical Considerations Regarding Health Databases and Biobanks. Croat Med J 2016; 57 (02) 207-13
- 24 UK Department of Health Data Sharing and Cyber Security Team. Your Data: Better Security, Better Choice, Better Care. Available at: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/627493/Your_data_better_security_better_choice_better_care_government_response.pdf . Accessed: 28 October 2017. 2017
- 25 Organisation for Economic Co-operation and Development. 2013 OECD Privacy Guidelines. Available at: www.oecd.org/internet/ieconomy/privacy-guidelines.htm . Accessed: 9 October 2017. 2013
- 26 Global Observatory on eHealth. Third Global Survey on eHealth 2015. The use of eHealth in support of universal health coverage. World Health Organiziation; 2015
- 27 Hyppönen H, Kangas M, Reponen J, Nohr C, Villumsen S, Koch S. , et al. Nordic eHealth Benchmarking - Status 2014 (TemaNord; No. TemaNord 2015:539). Copenhagen; 2015
- 28 Technology Informatics Guiding Education Reform (TIGER). The TIGER Nursing Informatics Competencies. Available: http://www.himss.org/ResourceLibrary/genResourceDetailPDF.aspx?ItemNumber=44660 (Accessed 21 November 2017). 2010
- 29 Hyppönen H, Hahtela N, Suutarla A, Sillanpää K, Kinnunen U-M, Ahonen O. , et al. Smart systems for capable users? Nurses' experiences on patient information systems 2017 (In Finnish, with English abstract) (In press). Finnish Journal of eHealth and eWelfare Finjehew ( https://journal.fi/finjehew ), 2018 (January).
- 30 Kaipio J, Lääveri T, Hyppönen H, Vainiomäki S, Reponen J, Kushniruk A. , et al. Usability problems do not heal by themselves: National survey on physicians' experiences with EHRs in Finland. Int J Med Inform 2017; 97: 266-81
- 31 Hyppönen H, Hyry J, Valta K, Ahlgren S. Electronic services in the social welfare and health care sector. Citizens' experiences and development needs Report 33/2014. Helsinki: National Institute for Health and Welfare (THL); 2014
- 32 Hämäläinen P, Doupi P, Hyppönen H. eHealth policy and deployment in the European Union: Review and analysis of progress. Helskinki: Stakes; 2008
- 33 Sandhu E, Weinstein S, McKethan A, Jain SH. Secondary uses of electronic health record data: benefits and barriers. Jt Comm J Qual Patient Saf 2012; 38 (01) 34-40
- 34 Hypponen H, Hamalainen P, Thonnet M, Nicholas L. Overview of OECD studies on eHealth and core outcome. Providing the first work on international activities outside EU. Available at: https://ec.europa.eu/health/sites/health/files/ehealth/docs/ev_20161121_co31_en.pdf . Accessed 6 October 2017. 2016
- 35 Organisation for Economic Co-operation and Development. OECD Guide to Measuring ICTs in the Health Sector. Available at: http://www.oecd.org/health/health-systems/Draft-oecd-guide-tomeasuring-icts-in-the-health-sector.pdf . Accessed: 9 October 2017
- 36 Vuokko R, Mäkelä-Bengs P, Hyppönen H, Lindqvist M, Doupi P. Impacts of structuring the electronic health record: Results of a systematic literature review from the perspective of secondary use of patient data. Int J Med Inform 2017; 97: 293-303
- 37 Hypponen H, Koch S, Faxvaag A, Gilstad H, Nohr C, Hardardottir G. , et al. Nordic eHealth benchmarking. TemaNord (c) Nordic Council of Ministers 2017. p. 528.
- 38 Millenson ML. When "patient centred" is no longer enough: the challenge of collaborative health. BMJ 2017; 358: j3048