Original Title: Participación de los pacientes en la evaluación de tecnologías sanitarias: manual metodológico

Authors' objectives: The aim of this methodological manual is to develop a guide to facilitate effective and efficient patient involvement in HTA processes in the Spanish Network of Agencies for Assessing National Health System Technologies and Performance (RedETS). This manual proposes a comprehensive and flexible framework proposing tools and capacities to involve patients in the activities of the RedETS.

Authors' results and conclusions: RESULTS: A total of 358 references were found in the electronic databases. From those, a total of 58 references were finally included. 43 additional references were identified thought manual search or through other references. 13 qualitative interviews to HTA managers, responsible and technicians were conducted. 66 patient and consumers organizations responded to the consultation in the first round and 37 in the second round. Main themes identified through literature research structured the results of this report. In the first place, participation was framed questioning why, who and through which channels participation can be done. In the second place, participation planification was analyzed, exploring the design and procedures for patient selection and invitation, showing which are the main expected contributions of patients to HTA and what resources are needed to make participation effective. In the third place, methods for participation were identified and evaluated. Finally, methods for the evaluation of patient participation were analyzed. Results synthesize findings of the document review, complemented by the findings of the interviews and the consultation. CONCLUSIONS: Patient participation can be present in most all of the HTA phases and products with more or less difficulties. Therefore, a progressive implementation of a patient participation strategy is recommended. Strategy implementation requires, in the first place, the establishment of a normative framework that can make transparent the value, objectives and procedures of patient participation in the RedETS. Secondly, there is a need to define the design and methods of patient participation for the different HTA phases. Finally, it will be important to built and to evaluate strategy that provides transparency on patients contributions and helps generating evidence on their impact in HTA

Authors' methods: Medline, Embase, Cinahl, SCI-EXPANDED, Cochrane Library, PsycINFO, Scopus and JSTOR were consulted to carry out a systematic search of the literature where studies with all designs, manuals, web pages or portals describing a strategy and/or methodology linking HTA and patient involvement were included. Two reviewers performed the selection process of studies and in case of doubt or disagreement between them a third reviewer was consulted. A qualitative study was conducted to analyze the perceptions of HTA managers in the Spanish context regarding patient involvement. The aims of the study were: 1) collecting definitions of patient involvement; 2) Collecting experiences of patient involvement in HTA in the Spanish context; 3) Collecting barriers and facilitators for patient involvement in our context. A Delphi consultation was sent to patient, carers and consumers organizations. The consultation explored in 2 rounds the opinions of this organizations related to: 1) What are the values that justify patient participation in HTA; 2) What are the methods, moments and activities in HTA in which patient participation is possible; 3) Which is the best way to operationalize patient involvement. Finally, a consensus process among the RedETS resulted in a strategy to incorporate patients in the Spanish HTA.

Project Status: Completed

Year Published: 2016

URL for published report: https://sescs.es/participacion-de-los-pacientes-en-la-evaluacion-de-tecnologias-sanitarias-manual-metodologico/

English language abstract: An English language summary is available

Publication Type: Full HTA

Country: Spain

Organisation Name: Canary Health Service

Contact Address: Dirección del Servicio. Servicio Canario de la Salud, Camino Candelaria 44, 1ª planta, 38109 El Rosario, Santa Cruz de Tenerife

Contact Name: sescs@sescs.es

Contact Email: sescs@sescs.es