Original Title: Evaluación de la participación de pacientes en informes de evaluación de tecnologías sanitarias

Authors' objectives: This report aims to establish a methodology for the evaluation of Patient Involvement in HTA in RedETS.

Authors' results and conclusions: Results The systematic search identified forty-nine references, only two of them were selected for full text reading. Handsearching identified an additional thirty-six documents that were also read in full text; and only thirteen met the inclusion criteria. Finally, a total of fifteen studies that evaluated the participation of patients in HTA were included. These selected studies used diverse methodologies such as: documentation review, qualitative case studies, with semi-structured interviews, focus groups or reflective learning, exploratory or case study with mixed techniques, a questionnaire and reflective comments. After reviewing all the references that were found, the PARADIGM tool was selected as it was considered the most comprehensive, updated and adaptable to the RedETS context. It was the only tool found whose design allowed a systematic and longitudinal evaluation of the participation of patients such as the one that is intended to be carried out in the RedETS. The Delphi study consisted of two rounds in which forty-seven and thirty-eight people respectively participated and resulted in the selection of thirty-five indicators related to the following three dimensions: structural, process and results. The characteristics of each of the indicators have been defined, including the items or questions that should be used for their measurement. Annual questionnaires addressed to each of the groups of agents involved in the process have also been developed. The evaluation of the participation of patients in the RedETS’ HTA will have as its first objective the promotion of transparency and accountability. Secondly, it will serve for the constant improvement, expansion and deepening of the participation of patients in the RedETS. The evaluation will be carried out in two temporalities. An annual evaluation will be conducted with questionnaires that will be addressed to each agency or unit of the RedETS, to the coordinators of each of the HTA and to the patients who have participated in each assessment. This annual evaluation will make it possible to meet the first objective of the evaluation to promote transparency and accountability. Every five years, the evaluation will be complemented by a case study specifically designed taking into account the results of the annual evaluations of the previous years and will serve to meet the objective of constant improvement, expansion and deepening of the participation of patients in the RedETS. Conclusion This report develops a proposal for evaluating the participation of patients in the HTA of the RedETS. This proposal aims to improve the sustainability, responsibility and democratization of the decisionmaking process, such as achieving a greater impact of the participation of patients in the scope and content of the HTA of the RedETS, a greater representativeness of the diversity of patients present in the National Health System, as well as overcoming the challenges and barriers encountered in the participation process. Without losing sight of these objectives, a feasible proposal has been sought, which allows the evaluation of patient participation to be included in the accelerated pace of work in HTA, without abandoning the establishment of open, equitable processes and improving capacities for patient participation in the medium and long term.

Authors' methods: The starting point was a review of the literature with systematic and manual searches to locate methodologies for evaluating the participation of patients both in HTA and in other scientific processes that could be adapted for use in the RedETS. The methods for evaluating patient participation found in the literature review were evaluated by the team preparing this report to select the most appropriate ones for their adaptation to the RedETS. Criteria of adaptability, relevance and feasibility were taken into account. The Patient Engagement Monitoring and Evaluation Framework tool, developed as part of the Patients Active in Research and Dialogues for an Improved Generation of Medicines (PARADIGM) project created for the evaluation of the participation of patients in the field of drug research [11], was considered the most appropriate for its adaptation to the RedETS framework. The PARADIGM tool [11] was adapted to the evaluation of patient participation in RedETS HTA through a Delphi study in two rounds. The objective of the Delphi study was to select and prioritize indicators for use in evaluating the participation of patients in the RedETS. In order to analyze the importance of each indicator, the median of their respective score was calculated and to obtain an indication of the degree of consensus between the opinions of the participants, interquartile ranges (IQRs) were also calculated, with a value of ≤2 indicating a good consensus on a 10-point Likert scale. The degree of consensus was calculated using the IQR. Consensus was considered to exist in those indicators with an interquartile range equal to or less than 2. Once the indicators had been prioritized, the team preparing this report and its external collaborators held a workshop to translate the prioritized indicators into a periodic evaluation strategy for the participation of patients in the RedETS. The purpose of the workshop was to define the objectives of the evaluation strategy of patient participation in RedETS HTA, the review of the selected indicators, the review of the research techniques proposed for each of the selected indicators, as well as how to define the temporality of the evaluation and indicate other necessary elements for the implementation of the evaluation of the participation of patients in the RedETS.

Project Status: Completed

Year Published: 2023

URL for published report: https://sescs.es/wp-content/uploads/2015/09/SESCS_ACT_EVALUACION-PACIENTES_DEF_NIPO.pdf?x68814

Requestor: Ministry of Health

English language abstract: An English language summary is available

Publication Type: Other

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