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A framework for action to improve patient and public involvement in health technology assessment

Published online by Cambridge University Press:  20 December 2021

Aline Silveira Silva*
Affiliation:
University of Brasilia, Campus Universitário, s/n, Centro Metropolitano, Brasilia, Distrito Federal, Brazil
Karen Facey
Affiliation:
Usher Institute, University of Edinburgh, NINE Edinburgh BioQuarter, 9 Little France Road, Edinburgh, UK
Stirling Bryan
Affiliation:
School of Population and Public Health, University of British Columbia, Vancouver, British Columbia, Canada Centre for Clinical Epidemiology and Evaluation, Vancouver, British Columbia, Canada
Dayani Galato
Affiliation:
University of Brasilia, Campus Universitário, s/n, Centro Metropolitano, Brasilia, Distrito Federal, Brazil
*
Author for correspondence: Aline Silveira Silva, E-mail: alinefarunb@gmail.com

Abstract

Background

Patient and public involvement (PPI) in the Brazilian Health Technology Assessment (HTA) process occurs in response to a legislative mandate for “social participation.” This resulted in some limited patient participation activities, and, therefore, a more systematic approach was needed. The study describes the development of a suggested framework for action to improve PPI in HTA.

Methods

This work used formal methodology to develop a PPI framework based on three-phase mixed-methods research with desktop review of Brazilian PPI activities in HTA; workshop, survey, and interviews with Brazilian stakeholders; and a rapid review of international practices to enact effective patient involvement. Patient partners reviewed the draft framework.

Results

According to patient group representatives, their involvement in the Brazilian HTA process is important but could be improved. Different stakeholders perceived barriers, identified values, and made suggestions for improvement, such as expansion of communication, capacity building, and transparency, to support more meaningful patient involvement. The international practices identified opportunities for earlier, more active, and collaborative PPI during all HTA stages, based on values and principles that are relevant for Brazilian patients and the public. These findings were synthesized to design a framework that defines and systematizes actions to support PPI in Brazil, highlighting the importance of evaluating these strategies.

Conclusions

Since the publication of this framework, some of its suggestions are being implemented in the Brazilian HTA process to improve PPI. We encourage other HTA organizations to consider a systematic and planned approach with regular evaluation when pursuing or strengthening involvement practices.

Type
Method
Copyright
Copyright © The Author(s), 2021. Published by Cambridge University Press

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