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Patient participation: the boom in health technology assessments

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By: Diana González-Bravo
MD, Epidemiologist
MBE researcher
Neuroeconomix

The Health Technology Assessment (Health technology assessment- HTA in English) is the process by which health technologies (drugs, devices, procedures, etc.) are evaluated in terms of efficacy, safety and economic impact. Usually, medical, social, ethical and economic dimensions are considered, so a multidisciplinary approach is of utmost importance, and ideally it should involve the perspective of the patients. Efforts are being directed to achieve significant patient participation in health technology assessment processes, although there is still a long way to go.

The patients are one of the most important actors in the health system, since the effects of the evaluated technologies will directly affect their life and quality of life. Exists scientific evidence (although scarce) that highlights the participation of patients in this type of evaluations, as well as in the development of health policies and practices. This has arisen from an identified need to involve patients in these processes, in order to complement health technologies with social value.

Dipankui et al. Conducted a study in which they sought to determine the patient's participation in the evaluation of alternative measures, the restriction and isolation of adults in psychiatric hospitalization and in homes for the elderly. The research group conducted interviews with caregivers, health administrators, patient representatives, members of the unit and members of the scientific committee for the evaluation of health technologies (ETES) and researchers.

The most interesting result of this exercise is that it was identified that for most of the actors of the health system interviewed, they agreed that the evaluation report was enriched to the extent that patients could suggest alternatives that could reduce the use of restraint and isolation in psychiatric units and homes for the elderly. Likewise, they understood that involving patients in these processes is of utmost importance when considering aspects of the use of medicines or devices, support networks, communication, doctor-patient relationship and the importance of listening and learning from different prospects. This study published in International Journal of Technology Assessment in Health Care In 2015, it is one of the few studies to evaluate the impact of patient participation in health technology evaluations. More studies are needed to identify the most appropriate participatory methodologies to incorporate patient participation in technology assessment.

 

The National Institute of Health and Care of Excellence (The National Institute for Health and Care Excellence- NICE, for its acronym in English) is a special health authority in charge of reducing the variation in quality between the information available on treatments and the health care available. Since 1999 NICE has involved patients in its methodological processes and they always highlight the importance of the participation of groups of patients and caregivers in the development stages of health technology evaluations and that their opinions can be included in the final report issued. In the same way, the committee makes decisions for health care, based on multiple actors, where the patients, patient organizations and caregivers, they play an extremely important role.

 

As a patient, how can I get involved in the technology assessment and decision-making processes in health?

For NICE, in the phase of scoping From technology assessment, there are two approaches by which a patient, a patient organization, and caregivers participate in these processes. They recommend that patients participate in both initiatives:

1. The scope query (written), where the perceptions of patients about the health technology to be evaluated or the decision to be taken are identified

2. The outreach workshop (oral), which is carried out after receiving the written comments of the scoping consultation and aims to discuss these issues to be included in the evaluations

In the development phase, there are three ways that patients can get involved:

1. Submit a written proposal to evaluate a technology of interest

2. Appoint experts (clinicians or expert patients) to attend the committee and provide a written statement

3. Provide feedback on the health technology assessment

 

Are there regulations for this?

In Colombia, there are legal mechanisms that contemplate citizen participation in health decision-making, which transform the role of people within the General Social Security System in health, from user to citizen with rights and duties. To mention some legal resources: Judgment T760 of 2008 of the Constitutional Court of Colombia, which indicates the direct and effective participation of the medical community and users of the health system, the Political Constitution of Colombia of 1991, Law 100 of 1993 and subsequent health sector regulations.

At the global level, that there is a legal mechanism that indicates the mandatory participation of patients, there is not. Nevertheless, Resolution CSP28.R9 (download here) is the first to be adopted by member states of RedETSA, regarding health technology evaluations and decision-making, published in September 2012, after the 28th Pan American health conference in September 2012. This regulation is intended to provide guidelines and promote acceptance of the decisions made, based on the available evidence, and also highlights that the legitimacy and degree of acceptance of these decisions depends on the participation of patients during the health technology evaluation process.

 

RedETSA, what is it?

http://redetsa.org/wp/?page_id=402

The Health Technology Assessment Network of the Americas (RedETSA) was established by PAHO in 2011 (Rio de Janeiro, Brazil), made up of health ministries, regulatory authorities, health technology assessment agencies, collaborating centers of the World Health Organization Health / Pan American Health Organization (WHO / PAHO) and educational and research institutions in 14 countries of the Region, including Colombia.

This network aims to improve the quality of care and patient safety and promote and strengthen the evaluation of health technologies through regional exchange, as a tool that supports decision-making on the incorporation, dissemination and use of technologies, considering the contexts health systems at the country level, expanding equity in patient access.

In its annual meetings, RedETSA highlights social values in decision-making: equity, right to health and judicialization, as well as the importance of patient participation in these processes. Additionally, they generate webinars, symposia and academic events in which the social value of patients is highlighted.

The important thing about involving patients in health technology assessments is that they can provide their perspectives on experiences, attitudes, beliefs, values, and expectations about health, disease, its effects, and about health technologies. This would enrich the work of evaluating a new technology, it would offer a broader picture and health decisions would be made together.

 

What happens in Colombia?

The Institute for Technological Evaluation in Health - IETS built a manual of citizen participation for the processes of evaluation of technologies in health or development of clinical practice guidelines. This is due to the fact that the IETS mission includes: inclusion of the perspectives and values that patients assign to the elements related to their health care in the development of clinical practice guidelines and the direct and effective participation of the medical community and users of the health system in the update of benefit plans (IETS, 2014).

 

Do you want to know more information?

Go to these websites where the panorama of the participation of patients in the evaluation of technologies at a global level and of the experience of Colombia will be broadened.

Institute of Technological Evaluation in Health. Participatory Processes Manual. Bogotá DC: IETS; 2014.

http://www.iets.org.co/Manuales/Manuales/Manual%20Participacio%CC%81n%2030%20sep.pdf

Cubillos Turriago L. Ministry of Health and Social Protection. Republic of Colombia. Health technology evaluation: applications and recommendations in the Colombian health social security system. Available in:

https://www.minsalud.gov.co/salud/Documents/Evaluaci%C3%B3n%20de%20Tecnologias%20en%20Salud.pdf

Series of technical notes on prioritization processes in health. Note 5: Health technology assessment institutes. Inter-American Development Bank- IDB. Technical note No. DB-TN-1253. Recommendations for its structuring based on the case of Colombia. Aurelio Mejía, Ana Lucía Muñoz. Available in:

https://publications.iadb.org/bitstream/handle/11319/8247/Nota-5-institutos-de-evaluacion-de-tecnologias-sanitarias.PDF?sequence=1

PAHO- Pan American Health Organization. Access 06/26/2018. Available in:  https://www.paho.org/hq/index.php?option=com_content&view=article&id=9229%3A2013-tecnologias-sanitarias&catid=5870%3Aassessment&Itemid=41687&lang=es

PAHO- Pan American Health Organization. Access 06/26/2018. Available in: http://redetsa.org/wp/?page_id=402

References

Mejía A, Muñoz AL. Series of technical notes on prioritization processes in health. Note 5: Health technology assessment institutes. Inter-American Development Bank- IDB. Technical note No. DB-TN-1253. Recommendations for its structuring based on the case of Colombia. Access 06/26/2018. Available in:

https://publications.iadb.org/bitstream/handle/11319/8247/Nota-5-institutos-de-evaluacion-de-tecnologias-sanitarias.PDF?sequence=1

PAHO- Pan American Health Organization. Access 06/26/2018. Available in:  https://www.paho.org/hq/index.php?option=com_content&view=article&id=9229%3A2013-tecnologias-sanitarias&catid=5870%3Aassessment&Itemid=41687&lang=es

PAHO- Pan American Health Organization. Access 06/26/2018. Available in: http://redetsa.org/wp/?page_id=402

Schonfeld C. The evaluation of health technologies as a tool for improving laboratory management. Acta bioquím. clin. latinoam. 2013 Mar [cited 2018 Jun 27]; 47 (1): 121-143.

Abelson J, Wagner F, DeJean D, Boesveld S, Gauvin FP, Bean S, Axler R, Petersen S, Baidoobonso S, Pron G, Giacomini M, Lavis J. Public and patient involvement in health technology assessment: a framework for action. Int J Technol Assess Health Care. 2016; 32 (4): 256-264.

Weeks L, Polisena J, Scott AM, Holtorf AP, Staniszewska S, Facey K. Evaluation of patient and public involvement initiatives in health technology assessment: a survey of international agencies. Int J Technol Assess Health Care. 2017; 33 (6): 715-723.

Dipankui MT, Gagnon MP, Desmartis M, Légaré F, Piron F, Gagnon J, Rhiands M, Coulombe M. Evaluation of patient involvement in a health technology assessment. Int J Technol Assess Health Care. 2015 Jan; 31 (3): 166-70.

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