Hostname: page-component-cd9895bd7-gxg78 Total loading time: 0 Render date: 2024-12-22T19:01:07.307Z Has data issue: false hasContentIssue false
  • English
  • Français

Picturing ELSI+: a visual representation of ethical, legal, and social issues, and patient experiences in Health Technology Assessment in Canada

Part of: Special Collection - Methods

Published online by Cambridge University Press:  15 November 2019

Murray D. Krahn ,
Joanna M. Bielecki ,
Karen E. Bremner Open the ORCID record for Karen E. Bremner [Opens in a new window] ,
Claire de Oliveira ,
Nisha Almeida ,
Fiona Clement ,
Diane L. Lorenzetti ,
Patricia O'Campo ,
Petros Pechlivanoglou  and
Andrea C. Tricco
Murray D. Krahn
Affiliation:
Toronto Health Economics and Technology Assessment Collaborative, University Health Network, Toronto, Ontario, Canada Faculty of Pharmacy, University of Toronto, Toronto, Ontario, Canada Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada Toronto General Hospital Research Institute, University Health Network, Toronto, Ontario, Canada Department of Medicine, Toronto General Hospital, University Health Network, Toronto, Ontario, Canada ICES, Toronto, Ontario, Canada
Joanna M. Bielecki
Affiliation:
Toronto Health Economics and Technology Assessment Collaborative, University Health Network, Toronto, Ontario, Canada
Karen E. Bremner*
Affiliation:
Toronto Health Economics and Technology Assessment Collaborative, University Health Network, Toronto, Ontario, Canada Toronto General Hospital Research Institute, University Health Network, Toronto, Ontario, Canada
Claire de Oliveira
Affiliation:
Toronto Health Economics and Technology Assessment Collaborative, University Health Network, Toronto, Ontario, Canada Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada ICES, Toronto, Ontario, Canada Centre for Addiction and Mental Health, Toronto, Ontario, Canada
Nisha Almeida
Affiliation:
Technology Assessment Unit, McGill University Health Centre, Montreal, PQ, Canada
Fiona Clement
Affiliation:
Health Technology Assessment Unit, University of Calgary, Calgary, Alberta, Canada Department of Community Health Sciences, University of Calgary, Calgary, Alberta, Canada
Diane L. Lorenzetti
Affiliation:
Department of Community Health Sciences, University of Calgary, Calgary, Alberta, Canada
Patricia O'Campo
Affiliation:
ICES, Toronto, Ontario, Canada Centre for Research on Inner City Health, St. Michael's Hospital, Toronto, Ontario, Canada Dalla Lana School of Public Health, University of Toronto, Toronto, Ontario, Canada
Petros Pechlivanoglou
Affiliation:
Child Health Evaluative Sciences, Hospital for Sick Children Research Institute, Toronto, Ontario, Canada
Andrea C. Tricco
Affiliation:
Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada Dalla Lana School of Public Health, University of Toronto, Toronto, Ontario, Canada Li Ka Shing Knowledge Institute, St. Michael's Hospital, Toronto, Ontario, Canada
*
Author for correspondence: Karen E Bremner, E-mail: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

Objectives

Consideration of ethical, legal, and social issues plus patient values (ELSI+) in health technology assessment (HTA) is challenging because of a lack of conceptual clarity and the multi-disciplinary nature of ELSI+. We used concept mapping to identify key concepts and inter-relationships in the ELSI+ domain and provide a conceptual framework for consideration of ELSI+ in HTA.

Methods

We conducted a scoping review (Medline and EMBASE, 2000–2016) to identify ELSI+ issues in the HTA literature. Items from the scoping review and an expert brainstorming session were consolidated into eighty ELSI+-related statements, which were entered into Concept Systems® Global MAX™ software. Participants (N = 38; 36 percent worked as researchers, 21 percent as academics; 42 percent self-identified as HTA experts) sorted the statements into thematic groups, and rated them on importance in making decisions about adopting technologies in Canada, from 1 (not at all important) to 5 (extremely important). We used Concept Systems® Global MAX™ software to create and analyze concept maps with four to sixteen clusters.

Results

Our final ELSI+ map consisted of five clusters, with each cluster representing a different concept and the statements within each cluster representing the same concept. Based on the concepts, we named these clusters: patient preferences/experiences, patient quality of life/function, patient burden/harm, fairness, and organizational. The highest mean importance ratings were for the statements in the patient burden/harm (3.82) and organizational (3.92) clusters.

Conclusions

This study suggests an alternative approach to ELSI+, based on conceptual coherence rather than academic disciplines. This will provide a foundation for incorporating ELSI+ into HTA.

Keywords

ELSIPatient preferencesPatient valuesHealth technology assessmentConcept map
Type
Method
Information
International Journal of Technology Assessment in Health Care , Volume 36 , Issue 1 , 2020 , pp. 40 - 49
Copyright
Copyright © Cambridge University Press 2019

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

Footnotes

*

Author Joanna M. Bielecki has been added to the byline. An addendum notice detailing the change has also been published (DOI: https://doi.org/10.1017/S0266462320000227).

References

1.Krahn, M, Miller, F, Bayoumi, A et al. (2018) Development of the Ontario Decision Framework: a values based framework for health technology assessment. Int J Health Tech Assess Health Care 34, 290–299.CrossRefGoogle ScholarPubMed
2.Burke, W, Appelbaum, P, Dame, L et al. (2015) The translational potential of research on the ethical, legal, and social implications of genomics. Genet Med 17, 12–20.CrossRefGoogle ScholarPubMed
3.Brezina, PR, Zhao, Y (2012) The ethical, legal, and social issues impacted by modern assisted reproductive technologies. Obstet Gynecol Int, 2012, 1–7. Article ID 686253.CrossRefGoogle ScholarPubMed
4.Ali-Khan, SE, Black, L, Palmour, N, Hallett, MT, Avard, D (2015) Socio-ethical issues in personalized medicine: a systematic review of English language health technology assessments of gene expression profiling tests for breast cancer prognosis. Int J Technol Assess Health Care 31, 36–50.CrossRefGoogle ScholarPubMed
5.Oliver, JM, McGuire, AL (2011) Exploring the ELSI universe: critical issues in the evolution of human genomic research. Genome Med 3, 38.CrossRefGoogle ScholarPubMed
6.Hofmann, B, Oortwijn, W, Lysdahl, KB et al. (2015) Integrating ethics in health technology assessment: many ways to Rome. Int J Technol Assess Health Care 31, 131–137.CrossRefGoogle ScholarPubMed
7.Caulfield, T, Chandrasekharan, S, Joly, Y, Cook-Deegan, R (2013) Harm, hype and evidence: ELSI research and policy guidance. Genome Med 5, 21.CrossRefGoogle ScholarPubMed
8.Assasi, N, Schwartz, L, Tarride, J-E, Campbell, K, Goeree, R (2014) Methodological guidance documents for evaluation of ethical considerations in health technology assessment: a systematic review. Expert Rev Pharmacoecon Outcomes Res 14, 203–222.CrossRefGoogle ScholarPubMed
9.Lehoux, P, Williams-Jones, B (2007) Mapping the integration of social and ethical issues in health technology assessment. Int J Health Tech Assess Health Care 23, 9–16.CrossRefGoogle ScholarPubMed
10.Potter, BK, Avard, D, Graham, ID et al. (2008) Guidance for considering ethical, legal, and social issues in health technology assessment: application to genetic screening. Int J Health Tech Assess Health Care 24, 412–422.CrossRefGoogle ScholarPubMed
11.Facey, K, Boivin, A, Gracia, J et al. (2010) Patients' perspectives in health technology assessment: a route to robust evidence and fair deliberation. Int J Technol Assess Health Care 26, 334–340.CrossRefGoogle ScholarPubMed
12.Einsiedel, EF (2011) Publics and vaccinomics: beyond public understanding of science. OMICS 15, 607–614.CrossRefGoogle ScholarPubMed
13.Morin, K (2009) Knowledge and attitudes of Canadian consumers and health care professionals regarding nutritional genomics. OMICS 13, 37–41.CrossRefGoogle ScholarPubMed
14.Abelson, J, Wagner, F, DeJean, D et al. (2016) Public and patient involvement in health technology assessment: a framework for action. Int J Technol Assess Health Care 32, 256–264.CrossRefGoogle Scholar
15.Assasi, N, Schwartz, L, Tarride, J-E, O'Reilly, D, Goeree, R (2015) Barriers and facilitators influencing ethical evaluation in health technology assessment. Int J Technol Assess Health Care 31, 113–123.CrossRefGoogle ScholarPubMed
16.Heintz, E, Lintamo, L, Hultcrantz, M et al. (2015) Framework for systematic identification of ethical aspects of healthcare technologies: the SBU approach. Int J Health Tech Assess Health Care 31, 124–130.CrossRefGoogle ScholarPubMed
17.van Hoorn, R, Kievit, W, Booth, A et al. (2016) The development of PubMed search strategies for patient preferences for treatment outcomes. BMC Med Res Methodol 16, 88.CrossRefGoogle ScholarPubMed
18.Brooker, A-S, Carcone, S, Witteman, W, Krahn, M (2011) Integrating quantitative preference-related evidence into HTA: the case of ventilation for COPD. 7 Oct 2011; Call Number: TR 2011.2.Google Scholar
19.Burke, JG, O'Campo, P, Peak, GL et al. (2005) An introduction to concept mapping as a participatory public health research method. Qual Health Res 15, 1392–1410.CrossRefGoogle ScholarPubMed
20.Guion, WK, Mishow, S, Passmore, GG, Witter, P (2010) Development of a concept map to convey understanding of patient and family-centered care. J Healthc Qual 32, 27–32.CrossRefGoogle ScholarPubMed
21.van Bon-Martens, MJH, van de Goor, LAM, Holsappel, JC et al. (2014) Concept mapping as a promising method to bring practice into science. Public Health 128, 504–514.CrossRefGoogle ScholarPubMed
22.Trochim, WMK (1989) An introduction to concept mapping for planning and evaluation. Eval Program Plann 12, 1–16.CrossRefGoogle Scholar
23.Kane, M, Trochim, WMK (2007) Concept mapping for planning and evaluation. Thousand Oaks, California, USA: Sage Publications.CrossRefGoogle Scholar
24.The Joanna Briggs Institute (2015) Joanna Briggs Institute reviewers’ manual: 2015 edition/Supplement. University of Adelaide, South Australia: The Joanna Briggs Institute.Google Scholar
25.Arksey, HA, O'Malley, L (2005) Scoping studies: towards a methodological framework. Int J Soc Res Methodol 8, 19–32.CrossRefGoogle Scholar
26.McGowan, J, Sampson, M, Lefebvre, C (2010) An evidence based checklist for the peer review of electronic search strategies (PRESS EBC). Evid Based Libr Inf Prac 5, 149–54.CrossRefGoogle Scholar
27.Concept Systems Inc (2012) The Concept Systems Global MAX (Build 2013.322.11) [Web-based Platform]. (2012). Ithaca, NY. Copyright 2004–2018; all rights reserved. Available at: http://www.conceptsystemsglobal.com.Google Scholar
28.Beauchamp, TL, Childress, JF (2013) Principles of biomedical ethics. 7th ed.New York: Oxford Univerity Press.Google Scholar
Supplementary material: Image

Krahn et al. supplementary material

Figure S1

Download Krahn et al. supplementary material(Image)
Image 66.1 KB
Supplementary material: Image

Krahn et al. supplementary material

Figure S2

Download Krahn et al. supplementary material(Image)
Image 42.7 KB
Supplementary material: File

Krahn et al. supplementary material

Tables S1-S3

Download Krahn et al. supplementary material(File)
File 19.4 KB