Agenda for patient-centered care research in Brazil

Rodrigues, Juliana Loureiro da Silva de Queiroz; Portela, Margareth Crisóstomo; Malik, Ana Maria

doi:10.1590/1413-812320182411.04182018

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OPINION • Ciênc. saúde coletiva 24 (11) • Nov 2019 • https://doi.org/10.1590/1413-812320182411.04182018 copy

Agenda for patient-centered care research in Brazil

Authorship SCIMAGO INSTITUTIONS RANKINGS

Abstract

Patient-centered care is an incipient movement and its practice still faces obstacles in the Brazilian health system, where it is not extensively identified as healthcare quality realm. Thus, this paper aims to establish a patient/person-centered care research agenda to support its implementation in the country’s healthcare services. A panel was held with nine experts to grasp different views on the subject. The face-to-face discussion was supported by a document systematizing an initial agenda proposal and a brief presentation of the patient-centered care concept and theoretical elements that underpin its practice. Panel participants defined a set of items to be explored in studies to identify implementation and to strengthen and to measure strategies for patient-centered care in the Brazilian context.

Key words
Person-centered care; Patient-centered care; Quality of care

Profile	Participant
Patient Association Representative.	X
Lawyer. Professor and Bioethics and Human Rights expert.
Doctor. Professor and Researcher in the field of Health Management.	X
Doctor. Municipal manager.	X
Nurse. Ph.D. in Public Health. Health Surveillance and Patient Safety expert.	X
Doctor. Ph.D. in Public Health. Professor and Researcher in the field of Healthcare Quality.	X
Doctor. Intensivist and Quality Advisor in a large specialized hospital.	X
Doctor. Ph.D. in Public Health. Endocrinology expert working in private practice.	X
Occupational Therapist. Master in Public Health with a dissertation dedicated to the topic of patient/person-centered care.	X
Doctor. Ph.D. in Public Health. Professor and researcher in the field of Bioethics
Doctor. Ph.D. in Public Health. Geriatrician active in Primary Care, in the public sector and the private sector.	X

Patient-centered care recommendations
Item	Justification	Main questions	Main points raised
The "person/patient-centered care" concept	Concepts facilitate communication between individuals.	What defines the concept of patient-centered care (PCC) for the Brazilian reality?	We chose to use the term "person-centered care". It was emphasized, however, that the choice of word can be conditioned to the level of complexity in which care is provided and, in this regard, the need for caution was emphasized to avoid distortions, obscurity and loss of healthcare's primary focus. There was no precise definition of person-centered care, with the proposal to set a specific agenda for this discussion.
Contextual aspects relevant to the implementation of person/patient-centered care.	Recognition that contextual factors, at different levels, influence the success (or not) of actions.	What are the contextual aspects that facilitate or hinder a patient-centered healthcare provision culture?	The recognition of contextual aspects is essential when you want to promote change. Context variations influence health practices, affecting their effectiveness. Contextual aspects are characterized by organizational practices such as teamwork, as well as anything in the practice environment that may hinder or facilitate the implementation of person / patient-centered care.
Policy strategies for implementation of person-centered care.	Although there are policies that consider elements of person-centered care in its composition and definition of its strategies, there is still no health policy focused on person-centered care in the country.	Should a policy be established in this regard? Which strategies would be appropriate? What are the similarities and differences between NHP and person-centered care?	We cannot deny the existence of interfaces between person-centered care and the National Humanization Policy (NHP), but we recognize that they are not the same thing. The contribution of person-centered care to safe care was highlighted. We propose that an attempt be made to establish a dialogue between groups that work in the area of healthcare quality and the group that participates in the formulation of the NHP.
Communication between health professionals and patients.	All relationships built between professionals, patients and families are permeated by communication and organizational aspects that interfere with the continuity of treatment.	What are the challenges for developing communication skills? What is the role of technologies in the communication in health services? How do we promote better communication among health professionals and between professionals and patients to foster person-centered care?	Organizational elements and lack of communication skills are aspects that can interfere with the communication process. Among the outstanding organizational factors: consultation time; the medical consultation environment; the role of technologies in the organization of care; the reduction of hierarchy gradients in the relationships among professionals; information sharing; the creation of means to enable the acquisition of accurate and reliable information; increased health literacy. Effective communication contributes to information sharing.
Sharing information and decisions as an element of person-centered care	There are significant challenges for decision-making to be a frequent practice in health services.	What limits are essential, from the patient's point of view, for the sharing of decisions?	Communication is an essential element for sharing decisions. Privacy has been cited as a principle that must be respected and preserved. The declaration of patient's rights was pointed out as a document that should be made available in the health services. Trust influences the sharing of decisions. Media-driven news feeds the "culture of fear" and interfere with trust building.
Contextual aspects that interfere in the continuity of care and adherence to the therapeutic plan			The proposed dismemberment of this item follows: "continuity of care" was referred to as a realm of the health system; "adherence" was related to aspects inherent to the subject of care, but that does not neglect the organizational aspects.
The relationship of the principle of integrality with the patient-centered care model.			It was recommended to withdraw this item, since, "integrality" is a multidimensional concept that should not be discussed in isolation. The need for a framework to address integrality was considered. Integrality was highlighted as the essence of person-centered care.
The incorporation of changes into the curricula and formation processes towards a new theoretical orientation and health practices.	The education and training of the health professionals are still predominantly dominated by the biomedical perspective (DNV / GL, 2013, p.126), but the social changes resulting from the process of demographic and epidemiological transition modify the demands and needs of the population.	Considering the aging population and the prevalence of chronic health conditions, what kind of disciplines could be incorporated into the curricula? What new demands and responsibilities are imposed on academia?	The influence of the market on the training of health professionals. The State as an inducer of changes in the care process. The inclusion of theoretical-practical disciplines focused on the development of empathy and compassion. Interdisciplinarity and teamwork are essential elements to be encouraged during the training process.
		Are the perceptions about patient-centered care in the Brazilian health context different from those observed in developed countries? How do we encourage the development of empirical studies in Brazil focused on this theme? Are there any particularly relevant issues?	Emphasis was placed on the lack of empirical work in Brazil on the quality of health services in general, emphasizing, in particular, the need for governmental and financial support to develop research on person-centered care. It was pointed out that there are few studies in Brazil on person/patient-centered care and those that exist have generic denominations and study in isolation the theoretical elements of this practice of care.
Development of empirical work in Brazil on person-centered care	The development of empirical work in Brazil on person/patient-centered care that recognizes it as realm of the quality of the health services is still insufficient.	Are the perceptions about person/patient-centered care in the Brazilian health context different from those observed in developed countries? Considering the different perspectives of person/patient-centered care, how do we encourage the development of empirical work in Brazil focused on this subject? Are there any particularly relevant issues?	Emphasis was placed on the lack of empirical work in Brazil on the quality of health services in general, emphasizing, in particular, the need for governmental and financial support to develop research on person-centered care. It was pointed out that there are few studies in Brazil on person/patient-centered care and those that exist have generic denominations and study in isolation the theoretical elements of this practice of care.
Person-centered care for safe care	The high incidence of adverse events in Brazil. Evidence that the involvement of patients and their relatives in care contributes to safer care. Concern of health systems with the issue of quality of care and patient safety.	To what extent does the legitimacy of the patient and companions in the care process contribute to safe care? How can patient and companions be involved in the healthcare process to make it safer?	The legitimation of the patient and companions in the care process contributes to a great extent for safe care. Sharing information is essential for safer care.
Creation of specific measurement tools aimed at the study of elements of person-centered care.	Tools for measuring components of person/patient-centered care are used, with greater emphasis on developed countries. It is an area where Brazil needs to move forward, validating existing tools or proposing new ones.	What realms and aspects should be considered in the measurement of person-centered care. To what extent can the proposition or validation of tools for measuring the person/patient-centered care contribute to the improvement of the quality of care?	The possibility of adapting international tools used to measure elements of patient-centered care or even the free creation consistent with the culture of healthcare in Brazil was highlighted.
Development of empirical studies on patient/person-centered care in Brazil.	The development of empirical work in Brazil on the person/patient- centered care that recognizes it as a realm of the quality of health services is still insufficient.	Are the perceptions about patient-centered care in the Brazilian health context different from those observed in developed countries? How do we encourage the development of empirical work in Brazil focused on this theme?	Emphasis was placed on the lack of empirical work in Brazil on the quality of health services in general, emphasizing, in particular, the need for governmental and financial support to develop research on patient/person-centered care. It was pointed out that there are few studies in Brazil on patient/person-centered care and those that exist have generic denominations and study in isolation the theoretical elements of this practice of care.

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E-mail: cienciasaudecoletiva@fiocruz.br

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[1] Colaboradores

JLSQ Rodrigues worked on the bibliographic research about the topic, writing, and event organization, consolidation and analysis of the discussion results. MC Portela was important regarding methodology guidance, event organization, final writing revision and indication of the experts that composed the panel. AM Malik participated as a member of the expert panel that was elaborated in the National School of Public Health (ENSP) for discussion on the topic patient-centered care; also worked in the final revision of the submitted material, adding pertinent considerations on the discussed topic.

Definition of a research agenda and approach of patient-centered care in Brazil
Objective	To establish an agenda for the research and approach of patient-centered care within the health services, starting from the appreciation and indication (or not) of a preferred terminology designation.
Proposed strategy	Brief discussion on the designations of "patient-centered care" and "person-centered care", to indicating a chosen term to be recommended in the Brazilian health context, followed by a debate on points to be included in the agenda.
Expected outcomes	Establishment of the agenda and the elaboration of a paper containing the systematization of the work performed, where all panel participants are coauthors.
Agenda submitted to the panel
Item	Justification	Main questions
The concept of "patient-centered care."	Concepts facilitate the operationalization of health interventions and practices.	What are the patient-centered care attributes that must be prioritized in the Brazilian healthcare reality, considering territorial diversity?
Contextual aspects relevant to the implementation of patient-centered care.	Recognition that contextual factors influence the success (or not) of interventions, towards improving the quality of healthcare and having a dynamic interaction with such actions.	What are the contextual aspects that facilitate or hinder a culture towards the provision of patient-centered healthcare? Does the provision of patient-centered care vary according to the effects of these contextual aspects?
The political strategies for implementing patient-centered care as a realm of healthcare quality in Brazil.	Brazil does not have a health policy that fully recognizes and supports person-centered care as a realm of the quality of health services.	Should a policy be established in this regard? What strategies would be appropriate in the three spheres of government in the institutional, healthcare, financing and work management contexts towards developing the workers' skills?
Communication between health professionals and patients	Communication is key to any relationship. The way it is developed can determine the success or failure of the relationship between health professionals and professionals and patients.	What are the challenges for the development of communication? How can we improve communication among health professionals and between professionals and patients to promote patient-centered care?
Sharing decisions as an element of patient-centered care.	Sharing decision-making in health services is burdened by significant challenges: weak communication, professional-centered practice, cultural and organizational aspects, shortage of human resources, and service overload can contribute to care with low participation by patients and families and more focused on institutional and health professionals' interests.	How do we overcome the resistance of health professionals? How do we deal with issues such as the disproportionality of human resources against demand? What limits are essential, from the patient's point of view, for the sharing of decisions?
Contextual aspects interfere in the continuity of care and adherence to the therapeutic plan	Health practices interact dynamically with internal aspects, inherent in the organization of health and external actions and services, characterized by the influence of other sectors of society, individual, collective and cultural factors of a community.	How do cultural aspects and different conceptions of health interfere with the continuity of healthcare? To what extent the way in which the health system is organized is conducive to or hinders the continuity of care?
The relationship between integrality and patient-centered care.	Integrality is one of the SUS principles that should guide all health practices.	Does the practice of patient-centered care promote the integrality of care?
The incorporation of curricular changes and in the training processes towards promoting a new theoretical orientation and health practices.	The education and training of the health professionals are still predominantly from a biomedical perspective (DNV/GL, 2013, p.126). The social changes resulting from the process of demographic and epidemiological transition modify the demands and needs of the population.	Considering the aging population and the prevalence of chronic health conditions, what kind of disciplines could be incorporated into the curricula? What new demands and responsibilities are imposed on academia?
Patient-centered care for the production of safe care.	High incidence of adverse events in Brazil. The involvement of patients and their families in the care of their health contributes to a safer treatment. Concern of health systems with the issue of quality of care and patient safety.	To what extent does the legitimacy of the patient and companions in the care process contribute to safe care? How can patient and companions be involved in the healthcare process to make it safer?
Creation of specific measurement tools aimed at studies of the elements that underlie patient-centered care.	Tools for measuring patient-centered care components are used with greater emphasis in developed countries. In Brazil has no recognized, validated tool for measuring patient-centered care.	To what extent can the creation and validation of a patient-centered measurement of care measure contribute to improving the quality of care?
Development of empirical work on person-centered care in Brazil.	The development of empirical studies in Brazil that recognize patient-centered care as a realm of the quality of health services is still insufficient.	Are the perceptions about patient-centered care existing in the Brazilian health context different from those observed in developed countries? Considering the different perspectives of patient-centered care, how do we encourage the development of empirical studies in Brazil focused on this topic? Are there any particularly relevant issues?