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SP0061 The Role of Patient Organisations in Health Technology Assessment
Abstract
Health Technology Assessment (HTA) is defined as a multidisciplinary process that summarises information about the medical, social, economic and ethical issues related to use of a health technology (medicines, devices, vaccines, rehabilitation etc) in a systematic, transparent, unbiased, robust manner. Its aim is to inform health policy at local or national level including decisions about reimbursement and access.
Principles of good practice for HTA were published in 2008 and these included “stakeholder involvement”, recognising that policy initiatives should include a democratic right for involvement. Patients and their representatives are clearly key stakeholders, but questions arise about how they should be involved in the complex processes of HTA without compromising scientific integrity.
The Health Technology Assessment International (HTAi) Interest Group for Patient/Citizen Involvement in HTA believes that patients and their representatives can provide valuable input to HTA by sharing their experiences of living with a condition, use of current health technologies and experiences and expectations of new health technologies. This unique knowledge can add value to every stage of the HTA process, but in many countries there is no involvement of patients and no transparency about how patients can be involved in HTA. So, the HTAi Interest Group works with all stakeholders to develop tools and initiatives to support HTA bodies to involve patients and patient organisations in a meaningful manner and to support patient organisations to get involved in HTA.
Any patient group's approach to HTA must be specific to their own setting, but can draw on the international recommendations made by HTAi – such as their Values and Quality Standards for Patient Involvement in HTA. Furthermore, patient groups can help support capacity building through better collaboration about their experiences in HTA and development of generic information about their condition and its unmet needs that can be shared internationally. Finally they have a crucial role in evaluating HTA processes to ensure that they are fair and transparent.
Disclosure of Interest
K. Facey Consultant for: A range of health technology companies, HTA bodies and patient organsiations
... En Europa existen institucionalmente una serie de mecanismos que garantizan la participación ciudadana en la toma de decisiones en ámbito de la salud, mientras que en la región Panamericana estas oportunidades son esporádicas y poco estructuradas. Es esencial reconocer que la perspectiva de los pacientes es irremplazable en distintas áreas de salud (24)(25)(26)(27)(28). En este sentido, y alineados a las organizaciones europeas y sus líneas de abordaje, este es el primer Manifiesto Panamericano que constituye una llamada a la acción para once países de la región (29). ...
Rheumatic and musculoskeletal diseases (RMDs for its acronym in English), are chronic pathologies of high morbidity with a great impact in quality of life, which generate disability and increase the costs of care. In Latin America there are multiple barriers to patient care. The objective of the study was to identify the care needs and difficulties that patients with RMDs face in the region.
... En Europa existen institucionalmente una serie de mecanismos que garantizan la participación ciudadana en la toma de decisiones en ámbito de la salud, mientras que en la región Panamericana estas oportunidades son esporádicas y poco estructuradas. Es esencial reconocer que la perspectiva de los pacientes es irremplazable en distintas áreas de salud (24)(25)(26)(27)(28). En este sentido, y alineados a las organizaciones europeas y sus líneas de abordaje, este es el primer Manifiesto Panamericano que constituye una llamada a la acción para once países de la región (29). ...
"Las enfermedades reumáticas y musculoesqueléticas (ERyMEs por sus siglas en español), son patologías crónicas de alta morbilidad con gran impacto en la calidad de vida, que generan discapacidad e incremento en los costos de atención médica. En latinoamérica hay múltiples barreras frente al cuidado del paciente. El objetivo de este estudio fue el identificar las necesidades de atención y dificultades que enfrentan los pacientes con ERyMEs en la región."
... En Europa existen institucionalmente una serie de mecanismos que garantizan la participación ciudadana en la toma de decisiones en ámbito de la salud, mientras que en la región Panamericana estas oportunidades son esporádicas y poco estructuradas. Es esencial reconocer que la perspectiva de los pacientes es irremplazable en distintas áreas de salud (24)(25)(26)(27)(28). En este sentido, y alineados a las organizaciones europeas y sus líneas de abordaje, este es el primer Manifiesto Panamericano que constituye una llamada a la acción para once países de la región (29). ...
As Doenças reumáticas e musculoesqueléticas (DsRM por sua sigla em português) são patologias crônicas de alta morbidade com grande impacto na qualidade de vida,que geram incapacidades e aumentam os custos do atendimento. Na América Latina, existem várias barreiras para o atendimento ao paciente. O objetivo do estudo foi identificar as necessidades de cuidado e as dificuldades enfrentadas por pacientes com DsRM na região.
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