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Objective The Spanish Network of Agencies for Assessing National Health System Technologies and Performance (RedETS) defined a patient involvement (PI) framework for health technology assessment (HTA) activities in 2016. The aim of this study is to evaluate the process and impact of those PI initiatives that were implemented in the first year following the publication of this new framework. Methods A survey was sent to those HTA researchers who implemented PI in RedETS projects. Responses were reviewed by two authors. An adapted thematic analysis was performed and the results were later discussed by all authors. Results Six responses from six agencies/units were analyzed. The objectives of PI initiatives were the following: inclusion of patient perspectives, preferences and values; elicitation of important health outcomes measures; and barriers, facilitators, or suggestions for implementation. Different methods were used for PI: surveys, focus groups, in depth interviews, and participation in an expert panel. Five main themes emerged: (i) challenges with the recruitment process, (ii) needs identified, (iii) impact of PI, (iv) lessons learned, and (v) suggestions for the future. Conclusions PI initiatives within the RedETS framework were tailored to each HTA project, its specific goals and the individual needs and resources of each HTA agency. The results also pointed out how PI has a relevant impact that has enriched RedETS products providing key information on experiences, values, and preferences of patients, contributions that benefit the HTA and the process of drawing up recommendations. The main challenges were related to recruitment processes and capacity building.

Introduction This paper aims to describe the development of a flowchart to guide the decisions of researchers in the Spanish Network for Health Technology Assessment of the National Health System (RedETS) regarding patient involvement (PI) in Health Technology Assessment (HTA). By doing so, it reflects on current methodological challenges in PI in the HTA field: how best to combine PI methods and what is the role of patient-based evidence. Methods A decisional flowchart for PI in HTA was developed between March and April 2019 following an iterative process, reviewed by the members of the PI Interest Group and other RedETS members and validated during an online deliberative meeting. The development of the flowchart was based on a previous methodological framework assessed in a pilot study. Results The guidelines on how to involve patients in HTA in the RedETS were graphically represented in a flowchart. PI must be included in all HTA reports, except those that assess technologies with no relevant impact on patients’ experiences, values, and preferences. Patient organizations or expert patients related to the topic of the HTA report must be identified and invited. These patients can participate in protocol development, outcomes' identification, assessment process, and report review. When the technology assessed affects in a relevant way patient experiences, values, and preferences, patient-based evidence should be included through a systematic literature review or a primary study. Conclusions The decisional flowchart for PI in HTA contributes to the current methodological challenges by proposing a combination of direct involvement and patient-based evidence.

IntroductionIn the past decades the community-based participatory research method known as PhotoVoice has gained relevance, but there are few published studies on its application in the field of health technology assessment (HTA) and clinical practice guidelines (CPGs). The aim of this presentation was to describe a PhotoVoice project linked to a CPG on major depression in children and adolescents.MethodsThe design of the study was adapted to the main objective, which was to enhance the understanding of major depression and improve clinical practice with the contributions of clinicians, methodologists, and patients. Seven adolescents and ten of their family members participated in the study through PhotoVoice sessions and focus groups. The audio recordings of all sessions were transcribed verbatim and coded, and a thematic analysis was undertaken.ResultsSix themes emerged: (i) a lack of understanding and information about depression in childhood and adolescence; (ii) the importance of support groups; (iii) the need to favor early care and access to services; (iv) the adaptation of therapeutic strategies tailored to individual needs; (v) the sensitivity of professionals; and (vi) fostering interaction between the health and education systems. Photographic exhibitions were planned to share the main results. These exhibitions were promoted to increase public awareness and reduce stigmatization, and to reach clinicians and policy makers. From a methodological point of view, the use of PhotoVoice in this study helped to effectively incorporate the lived experiences, concerns, and preferences of patients and their relatives into the CPG. The study also confirmed the value of photographs and participatory methods. The main limitations and strengths of the study, as well as suggestions for future research, are also outlined.ConclusionsPhotoVoice is a flexible, effective, and innovative method of obtaining information about patients’ perspectives and experiences, and it offers the added value of being able to reach the main stakeholders, including policymakers and the public.