Can We Afford to Exclude Patients Throughout Health Technology Assessment?

Abstract

Health technology assessment (HTA) is intended to determine the value of health technologies and, once a technology is recommended for funding, bridge clinical research and practice. Understanding the values and beliefs expressed by patients and health professionals can help guide this knowledge transfer and work toward managing the expectations of end users. We gathered patient and patient group leader experiences to gain insights into the roles that patients and patient advocacy groups are playing. We argue that through partnerships and co-creation between HTA professionals, researchers and patient advocates we can strengthen the HTA process and better align with service delivery where person-centered care and shared decision making are key elements. Patient experiences and knowledge are important to the democratization of evidence and the legitimacy of HTAs. Patient preference studies are used to balance benefits with potential harms of technologies, and patient-reported outcomes (PROs) can measure what matters to patients over time. A change in culture in HTA bodies is occurring and with further transformative thinking patients can be involved in every step of the HTA process. Patients have a right to be involved in HTAs, with patients' values central to HTA deliberations on a technology and where patients can provide valuable insights to inform HTA decision-making; and in ensuring that HTA methodologies evolve. By evaluating the implementation of HTA recommendations we can determine how HTA benefits patients and their communities. Our shared commitment can positively effect the common good and provide benefits to individual patients and their communities.

Patient-centered health technology assessment: a perspective on engagement in health technology assessment by three patient organizations and a health technology assessment body

“…As expected by the concepts of knowledge transfer and coproduction (27;28), the value of the collaboration continued after the review’s publication. All three organizations (plus ICER) disseminated the results to their communities and external stakeholders.…”

Where National Medicines Policies Have Taken Us With Patient Involvement and Health Technology Assessment in Africa

“…From a patient perspective, patients have a right to participate in the planning and delivery of their healthcare, where HTA determines the health services, procedures, and technologies available to them; as a way to build trust in the health system, add value to patients, and center on evidentiary contributions that patients can provide (24). From a methodological perspective, patients may be able to help HTA methodologies evolve, for example by seeking clinical trial outcomes that matter to patients, looking for different clinical trial designs, involving broader groups of people, and in following real world evidence (25).…”

Participação social dos pacientes na avaliação de tecnologia em saúde: fundamentação, desafios e reflexões sobre a CONITEC

“…Destacam-se algumas iniciativas de outros países, enquanto tentativas de ampliar a incidências dos outros mecanismos de participação. Por exemplo, o convite feito a grupos de pacientes para contribuições específicas pela Canadian Agency for Drugs and Technologies in Health (CADTH) (BERGLAS; VAUTOUR; BELL, 2021); o envolvimento de grupos de pacientes na discussão que informa o desenvolvimento de dado protocolo, mecanismo do National Institute for Health and Care Excellence (NICE) e a oportunidade do responsável pelo desenvolvimento da tecnologia de requerer um encontro do Engajamento de Clínicos e Pacientes, levado a cabo no Scottish Medicine Consortium (SMC) (WALE, 2021).…”

“…Desse modo, constata-se que, atualmente, há um consenso em torno da importância de se empregar a ATS na tomada de decisão sobre as tecnologias que serão incorporadas em determinado sistema de saúde. Portanto, compreende-se que a perspectiva do paciente é importante para a democratização das evidências aportadas ao processo de ATS (WALE, 2021). Essa Avaliação é um processo multidisciplinar, que tem como propósito sistematizar informações de distintas naturezas, tanto médica, social, econômica, ética , quanto podem derivar do conhecimento experiencial do paciente.…”

“…Dados que não são explicados na descrição clínica da doença, assim como a compreensão de que um paciente individual pode explicar os significados dos resultados complexos sobre a vida diária do paciente . Com efeito, em junho de 2021, a International Network of Agencies for Health Technology Assessment (INAHTA) assentou que "o envolvimento do paciente é reconhecido pela INAHTA como um elemento importante e valoroso na condução da ATS" (WALE, 2021).…”