Patient involvement in HTA process: an international perspective
Jaime Hernán Rodríguez Moreno
Md, MGSIG. PhDPH. DBA(c)
Healthcare Services Consultant
“New forms of government no longer depend only on citizens exercising their political rights freely, but also for them to be actively involved in the different fields and stages of public affairs”(1)
Health Technology Assessment is one of the tools used by governments and the different health system agents to support decision-making and to orient Health System coverage worldwide.
Over the years, technologies assessment processes has strengthened its methodologies, not only its technical components, but also the phases of the process, which not only cover the procedures of literature review and models development, that include technologies prioritization and the process, the use in decision-making and the implementation of the results of the evaluation.
Based on these perspectives, the participation of the beneficiaries of the technology evaluation is grouped into the following categories(2):
- Individual patient: the person who has the disease subject to evaluation. Represent their own interests.
- Caregiver: A person who helps the patient or their family in care, represents their own interests as support for the patient.
- Patient advocate: A person acting on behalf of patients or an organization, as a support to the population, without formally representing it.
- Patient organizations: acts under a formal representation of a group of patients.
- Expert patients: patients with formal knowledge of their health condition, the technology evaluated or the research methodologies. It may or may not formally represent patients.
The patients or groups of them can participate through three modalities:
- Informative: it is a passive mechanism, when information is only received, without being able to express opinions.
- Consultative: in this modality, the patients or their representatives can comment on the process, in this case, their opinions are received through different mechanisms, such as surveys, interviews or others, without ensuring that the comments are incorporated into the process
- Active: in this modality, patients or organizations are part of decision-making committees, have a voice and vote in decision-making bodies within the health system.
Models of participation in the world.
The level of participation of patients in the evaluation of technologies in each country depends on the characteristics of the health system and the socio-political conditions of each one, being more developed in those countries where the evaluation of health technologies has been established as an activity that is part of the definition of payment mechanisms, purchase of supplies and medicines, coverage plans and reimbursement mechanisms for health services.
Despite the differences, there are four determinants that influence the aspects that are addressed in the participatory process of patients or their representatives, these are:
- Participation modality
- Time of participation
- Scope of participation
- Conflict of Interest
Based on these four elements, the level of development in each country or area of the world is diverse, then the characteristics of some of them are found:
- European model: in Europe, EUPATI, which is the European network that promotes the participation of patients. Its function is to educate and to generate recommendations for the integration to the participatory processes, promoting the consultative and active participation in the four moments of the HTA.
- Canada: It is one of the models that has evolved the most, going from being advisory or informative in the development process, to being consultative and active in prioritizing, developing and disseminating, the latter being very important, since they make feedback about the level of acceptance and use of the results of the HTA (3). The participatory model is consultative and active both at the national level and in each of the province’s technology assessment agencies.
From the methodological point of view, they have led to the development of virtual communication tools, so costs are optimized, but the level of participation is broadened.
- Brazil: This participatory model integrates patients in the decision-making committees of CONITEC, which is the entity in charge of the evaluation of technologies in Brazil, through this organism they participate in an advisory and active way. Through the articulation of CONITEC, patients are linked in the prioritization of technologies, in the generation of recommendations and as receivers and users of the information produced.
In conclusion, the participatory processes worldwide has evolved, moving from passive patient-receiving, to be active in the decision-making process and implementation of the recommendations produced. However, each country has determined the mechanisms, regulations, and level of interaction.
Nonetheless, it is necessary to develop processes of training and strengthening the competencies of patients, caregivers, and their representatives to strengthen their work and the effectiveness of their participation.
1. Vallespín F. El futuro de la política. Madrid: Taurus; 2000. 239 p. (Pensamiento).
2. Hunter A, Facey K, Thomas V, Haerry D, Warner K, Klingmann I, et al. EUPATI Guidance for Patient Involvement in Medicines Research and Development: Health Technology Assessment. Front Med [Internet]. 6 de septiembre de 2018 [citado 13 de febrero de 2019];5. Disponible en: https://www.frontiersin.org/article/10.3389/fmed.2018.00231/full
3. Gagnon M-P, Candas B, Desmartis M, Gagnon J, Roche DL, Rhainds M, et al. Involving patient in the early stages of health technology assessment (HTA): a study protocol. BMC Health Serv Res [Internet]. diciembre de 2014 [citado 13 de febrero de 2019];14(1). Disponible en: https://bmchealthservres.biomedcentral.com/articles/10.1186/1472-6963-14-273
4. On behalf of the HTAi Patient and Citizen Involvement in HTA Interest Group, Patient Involvement and Education Working Group, Scott AM, Wale JL. Patient advocate perspectives on involvement in HTA: an international snapshot. Res Involv Engagem [Internet]. diciembre de 2017 [citado 13 de febrero de 2019];3(1). Disponible en: http://researchinvolvement.biomedcentral.com/articles/10.1186/s40900-016-0052-9