Effective participation of individuals with disabilities in health technology assessment (HTA) processes is paramount. Aware of the reality of people with physical and organic disabilities, COGAMI (a not-for-profit umbrella organization of disability associations) conducted an internal study to gather perspectives on the participation of people with disabilities in HTA processes.

An ad hoc questionnaire of four open-ended questions was designed and distributed via email to COGAMI’s socio-health commission, representing 23 entities and 4,000 people in Galicia. A thematic analysis of the responses obtained was carried out.

Consensus underscores the fundamental role of individuals with disabilities and their representative organizations in HTA processes, though currently, only those with greater resources actively participate. The participants found that insufficient information reaching patient organizations hinders participation (e.g., lack of awareness in proposal submission), complicating their involvement. Additional challenges include accessibility and the digital divide. Proposed solutions involve enhancing communication channels and information accessibility, establishing collaborative frameworks nationally, and actively considering the disability condition to ensure a fair and equitable implementation.

This study suggests the need for concrete actions to enhance the participation of individuals with disabilities in HTA processes. Recommendations include improving communication channels, capacity building, and recognizing disability as a key element in HTA.

Patient engagement in the health technology assessment (HTA) field is crucial but faces significant challenges. This study focuses on identifying the barriers and facilitators surrounding the incorporation of patients in HTA while proposing solutions from the perspective of the Patient Interest Group (GIP) within the Spanish Network of Agencies for Health Technology Assessment and Services of the National Health System (RedETS).

An ad hoc questionnaire with four open-ended questions about barriers, facilitators, and proposals was developed and distributed among the GIP members through an email survey methodology. The obtained results were discussed in an open in-person meeting, and a thematic analysis of the data was conducted.

Fifteen people answered the questionnaire (at least one HTA researcher from each agency), and forty people participated in the face-to-face discussion. Main barriers included the perception of a lack of institutional support, insufficient participative culture, lack of time and experience, and difficulties in planning. Facilitators included activities organized within the GIP and methodological procedures and documents published. The main proposals for improvement were focused on the training and capacity building of HTA researchers and patients, institutional commitment to patient involvement, promotion of forums and activities with patient entities, and improvement of communication channels with patients and dissemination.

Despite current challenges in patient involvement, this study highlights facilitators and proposals for improvement. Specialized training and education, along with the promotion of a participative culture, emerge as relevant strategies.

The participation of people with mental health conditions or patient representatives is of relevance in the health technology assessment (HTA) field, although there are some challenges that need to be considered. This study was designed to gain the perspectives of patient representatives with experience participating in HTA projects, with the aim of delving into the main issues and proposing ideas for the future.

A structured interview, based on five open-ended questions, was formulated and distributed via email. Five patient representatives from the Saúde Mental FEAFES Galicia (the Federation of Associations of Family Members and Persons with Mental Illness of Galicia, Spain) who had actively engaged in HTA projects over the past five years participated in the study. The collected data were analyzed using thematic analysis.

Participants underscored the pivotal role of involving persons with mental health conditions and their representatives in HTA and emphasized the importance of knowing their perspectives, preferences, and values. Challenges included the complexity of HTA reports and processes, in terms of length and the technical language used, and socioeconomic barriers. Proposed solutions included material adaptation, streamlined processes, and institutional and professional support. Future recommendations emphasized improving awareness, disseminating the HTA field, fostering active participation, and emphasizing the relevance of participating in the HTA process. Of particular significance was the encouragement of training and capacity building among patients with mental health conditions.

This study reveals the need to strengthen and facilitate the participation of individuals with mental health conditions in HTA processes, and emphasizes the importance of knowing their perspectives, preferences, and values. Recommendations include training and capacity building, simplifying materials and processes, and providing adequate support.

Patient-reported outcome measures are being increasingly considered both in clinical practice and in the field of health technology assessment. Although emotional distress is currently recognized as the sixth vital sign in cancer care, its early detection and screening is not yet included in routine clinical practice in Spain. The main objective of this study was to assess the psychometric properties and diagnostic accuracy of validated tools for the early detection of distress among adults with cancer in the Spanish context, at the request of the Spanish National Health System (NHS) Cancer Strategy.

A systematic review was carried out to analyze development and validation studies. The Quality Assessment of Diagnostic Accuracy Studies tool (QUADAS-2) was used for the risk of bias assessment, and a multicriteria global assessment was used for the tests. Ethical and organizational aspects were also addressed.

Fifteen validation studies were included, corresponding to seven tests. The tools considered were the Distress Thermometer (DT), the Brief Symptom Inventory-18 (BSI-18), the Edmonton Symptom Assessment System-revised (ESAS-r), the Hospital Anxiety and Depression Scale (HADS), the Visual Analog Scale for Anxiety and Depression (VAS-AD), the Detection of Emotional Distress (DED) scale, and the Psychosocial and Spiritual Needs Evaluation (ENP-E) scale. Evidence of validity, reliability (internal consistency), and diagnostic accuracy (sensitivity, specificity, and area under the receiver operating characteristic curve) were summarized. Three scales were rated as poor (VAS-AD, BSI-18, and ESAS-r), the ENP-E scale was rated as acceptable, and three scales were rated as moderate (DT, DED, and HADS).

The DT (single-item measure) stands out as an appropriate tool for early detection of emotional distress in the Spanish NHS. The use of this scale could be considered a first stage, to be combined later with a longer scale to improve screening specificity. The HADS scale could be utilized for this purpose. The use of these tools should be framed within a structured screening program that ensures further evaluation and subsequent psychological care when needed.