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

Published online by Cambridge University Press:  15 November 2019

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
Corresponding
E-mail address:

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.

Type
Method
Copyright
Copyright © Cambridge University Press 2019

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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).

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