Involving patients in HTA activities at local level: a study protocol based on the collaboration between researchers and knowledge users.

Marie-Pierre Gagnon,Mylène Tantchou Dipankui,Dolores Lepage-Savary,France Légaré,Marc Rhainds,François-Pierre Gauvin,Florence Piron,Martin Coulombe,Johanne Gagnon,Michèle St-Pierre,Marie Desmartis

doi:10.1186/1472-6963-12-14

Abstract

BackgroundThe literature recognizes a need for greater patient involvement in health technology assessment (HTA), but few studies have been reported, especially at the local level. Following the decentralisation of HTA in Quebec, Canada, the last few years have seen the creation of HTA units in many Quebec university hospital centres. These units represent a unique opportunity for increased patient involvement in HTA at the local level. Our project will engage patients in an assessment being carried out by a local HTA team to assess alternatives to isolation and restraint for hospitalized or institutionalized adults. Our objectives are to: 1) validate a reference framework for exploring the relevance and applicability of various models of patient involvement in HTA, 2) implement strategies that involve patients (including close relatives and representatives) at different stages of the HTA process, 3) evaluate intervention processes, and 4) explore the impact of these interventions on a) the applicability and acceptability of recommendations arising from the assessment, b) patient satisfaction, and c) the sustainability of this approach in HTA.MethodsFor Objective 1, we will conduct individual interviews with various stakeholders affected by the use of alternatives to isolation and restraint for hospitalized or institutionalized adults. For Objective 2, we will implement three specific strategies for patient involvement in HTA: a) direct participation in the HTA process, b) consultation of patients or their close relatives through data collection, and c) patient involvement in the dissemination of HTA results. For Objectives 3 and 4, we will evaluate the intervention processes and the impact of patient involvement strategies on the recommendations arising from the HTA and the understanding of the ethical and social implications of the HTA.DiscussionThis project is likely to influence future HTA practices because it directly targets knowledge users' need for strategies that increase patient involvement in HTA. By documenting the processes and outcomes of these involvement strategies, the project will contribute to the knowledge base related to patient involvement in HTA.

Highlights

The literature recognizes a need for greater patient involvement in health technology assessment (HTA), but few studies have been reported, especially at the local level
Other studies listed in this review evaluated the direct participation of patients in HTA activities, notably those conducted by the National Institute for Health and Clinical Excellence (NICE), and the National Coordinating Centre for HTA (NCCHTA) in the United Kingdom [17,18,19,20]
In the field of clinical practice guidelines, a systematic review found that patient and public involvement was more frequent in mental health [42]. This project represents a unique opportunity for policy makers and researchers to work toward a common goal to test different forms of patient involvement in HTA and to evaluate them in order to produce useful knowledge regarding the implementation of patient involvement strategies in HTA and their possible effects and impacts

Summary

Introduction

The literature recognizes a need for greater patient involvement in health technology assessment (HTA), but few studies have been reported, especially at the local level. Following the decentralisation of HTA in Quebec, Canada, the last few years have seen the creation of HTA units in many Quebec university hospital centres These units represent a unique opportunity for increased patient involvement in HTA at the local level. The purpose of health technology assessment (HTA) is to summarize information about the clinical, economic, psychological, social and ethical aspects of health technologies Taking their perspective into account is essential in order to arrive at a more complete assessment of the real value of health technologies and of their impact on the health of populations [7]. This lack of documentation may be due to the fact that patient involvement is seen more as an end in itself, rather than a means, and to the difficulty of evaluating their involvement without the support of widely accepted frameworks and tools [14]

Objectives

Methods

Conclusion