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Agenda for patient-centered care research in Brazil

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

Resumo

O cuidado centrado no paciente se constitui em um movimento incipiente e sua prática ainda encontra obstáculos no sistema de saúde brasileiro, onde é pouco identificado como uma dimensão da qualidade dos cuidados de saúde. Baseado nisso, este artigo se propõe a estabelecer uma agenda de pesquisa sobre o cuidado centrado no paciente/pessoa, com vistas a subsidiar a sua implementação em serviços de saúde do país. Foi realizado um painel com nove especialistas, a fim de apreender diferentes olhares sobre o tema. A discussão presencial foi subsidiada por um documento sistematizando uma proposta inicial de agenda e uma breve apresentação sobre o conceito de cuidado centrado no paciente e elementos teóricos que conformam sua prática. Os participantes do painel definiram um conjunto de itens a serem explorados em estudos no sentido da identificação de estratégias de implementação, fortalecimento e medição do cuidado centrado no paciente no contexto brasileiro.

Palavras-chave
Cuidado centrado na pessoa; Assistência centrada no paciente; Qualidade do cuidado

Introduction

Donabedian11 Donabedian A. The quality of care. How can it be assessed? JAMA 1988;260(12):1743-1748. already emphasized interpersonal relationships as a fundamental healthcare component, which suggests that the centrality of healthcare in the subject is not new. To date, it does not correspond to a precise concept22 Sands KEF. Patient-centred care: confessions of a pragmatism. BMJ Qual Saf 2016;25(12):909-910. but has gained momentum in this millennium with the inclusion of “patient-centered care” as one of the goals of a plan to improve the quality of healthcare in the United States, as set forth in the “Crossing the quality chasm: A new health system for the 21st century” report of the Institute of Medicine (IOM). In this document, patient-centered care is defined as “respectfully providing care, responding to the needs, preferences and values of the assisted, with the assurance that those values guide all clinical decisions” 3.

Currently, a diversity of terms translates the centrality of healthcare in the subject. Such words are interchangeable and their use may vary according to the context in which the provision of health services occurs44 Lines LM, Lepore M, Wienner JM. Patient-centered, person-centered, and person directed care: They are not the same. Med Care 2015;53(7):561-563..

There is evidence that the practice of patient-centered care has positive effects on clinical outcomes, stimulating cooperation and enabling support and consolidation of their rights55 The Health Foundation. Person-centred care made simple: what everyone should know about person-centred care. London: The Health Foundation; 2014.. It is a care model that seeks to break with the remaining paradigms of the biomedical model and overcome the fragmentation of care66 Zhao J, Gao S, Wang J, Liu X, Hao Y. Differentiation between two healthcare concepts: person-centered care end patient-centered care. Intern J Nurs Sci 2016;3:398-402..

However, the implementation of this practice of care is a significant challenge for health services55 The Health Foundation. Person-centred care made simple: what everyone should know about person-centred care. London: The Health Foundation; 2014.,66 Zhao J, Gao S, Wang J, Liu X, Hao Y. Differentiation between two healthcare concepts: person-centered care end patient-centered care. Intern J Nurs Sci 2016;3:398-402.. This is attributed to paternalism, beliefs and cultures of the population; change-resistant professionals because they believe they already practice patient-centered care; few empirical driving studies; lack of leadership; and the infrastructure of the environment55 The Health Foundation. Person-centred care made simple: what everyone should know about person-centred care. London: The Health Foundation; 2014.,77 Ahmad N, Ellins J, Krelle H, Lawrie M. Person-centred care: from ideas to action: Bringing together the evidence on shared decision making and self-management support. London: The Health Foundation; 2014..

The principles guiding the practice of patient-centered care are dignity, compassion and respect; coordination and integration of care; personalized care; self-care support; information, communication and education; physical comfort; emotional support, fear and anxiety relief; involvement of relatives and friends; transition and continuity; and, more recently, access to care88 Picker Institute. Principles of patient-centered care. 2017..

It is appropriate to propose an agenda of elements to be prioritized in the research area, to the effective implementation of patient-centered care in health services, considering the importance of the theme and the peculiarities of the Brazilian context. In this regard, this paper aims to show an agenda that supports the development of studies capable of pointing out strategies for the implementation of “patient-centered care” in Brazilian health services.

Methods

A panel of experts was held to grasp different theoretical and practical views on “patient-centered care”. Eleven professionals were invited to the panel, considering affinity with the theme and work in the provision of health services in private or public establishments, either in activities of planning and coordination of actions in SUS management institutions or academic activities. The representation of categories was not a concern in the choice of participants. We also considered relevant the participation of a patient engaged in the fight for the protection of patients, searching for this individual in an association of patients (Chart 1).

Chart 1
Composition of the Panel of Experts

After the participants’ consent, the debate was recorded to safeguard all the technical inputs, linking them to the proposed discussion topics (Chart 2), and support the analysis of the panel’s outcomes.

Chart 2
Points covered in the base document submitted to the panel of experts.

In contact with the Research Ethics Committee (CEP) of the institution where the panel was promoted, it was argued that members of a group of experts are invited to provide professional opinions, based on their knowledge and experience. Thus, they are not in a condition of vulnerability, justifying non-submission to said Committee. After consultation of the CEP with the National Research Ethics Committee, this argument was accepted.

Results

The experts’ meeting was held on May 21, 2015, lasting six hours. Although all the guests expressed interest, only nine experts participated in the panel. As a starting point, a brief presentation of the concept of patient-centered care, theoretical elements and the relevance of discussing the topic in the Brazilian and international contexts was made. The panel reached the consensus that the theoretical framework of the discussion about patient-centered care is closely related to other realms of the quality of healthcare, incurring issues relevant to the actual current complexity of care.

Chart 3 systematizes the final result of the debate that has taken place, some of which are highlighted below.

Chart 3
Consolidated final result of discussions: Agenda proposed by the panel.

The person/patient-centered care concept

Considering the diversity of terms that express the centrality of healthcare in the subject, the participants were shown two options that are more appropriate in health services: patient-centered care and person-centered care. The pre-selection of these expressions was based on the fact that the word “patient” is still widely used in the context of healthcare, and “person” is more comprehensive and has many advocates in the national and international literature.

By accepting specificities and overlapping of the submitted words, the panel concluded that the use of the expression “person-centered care” would be more congruent to the reality of the Brazilian health system. According to the opinions, the word “patient” restricts the subject’s approach and suggests a specific vulnerability of the one receiving healthcare, besides excluding the health promotion component.

However, attention was also paid to the need for caution in stating that the term “person-centered care” is more appropriate than “patient-centered care” to avoid distortions and loss of healthcare’s primary focus.

Patient/person-centered care relevant implementation contextual aspects

According to the panel, the organizational characteristics, determined by the way health actions and services are organized within the system, directly affect the operationalization of health practices. Thus, it can be said that public policies, the organization of the work process, the availability of resources, organizational values, leadership and the individual values of each person influence the way an institution plans and implements its activities.

Patient/person-centered care implementation strategies

Although the importance of patient-centered care for the improvement of the quality of health services is admitted, it is clear that Brazil lacks a policy that integrates all the theoretical elements and principles necessary for the establishment of this practice of care. According to the participants, some interfaces between components of patient-centered care and the National Humanization Policy (NHP) are noted, but the latter does not work with the concept in its entirety.

Assuming that, in the Brazilian context, the NHP emerged as a cross-cutting strategy for the production and reorganization of collective practices of care and management, a dialogue was proposed between quality of healthcare studies scholars and professionals who participated in the formulation and implementation of this policy to compare aspects included by the NHP with elements of patient-centered care. Such an exercise will provide favorable circumstances for the application of the patient-centered care practice, from the identification of common or divergent elements between the two.

Communication between health professionals and patients

Communication was recognized as a fundamental element and a skill to be developed in the delivery of healthcare, highlighting its complexity and dynamic character. Several factors may interfere with the quality of communication among health professionals and between professionals and patients, ranging from individual characteristics of subjects to contextual circumstances. In this context, among other aspects, important are the organizational situations - work process flow, overload of professionals; adequate infrastructure for preserving privacy; the hierarchical level of professional relationships and asymmetrical knowledge.

The panelists stated that the asymmetry of information manifested in the relationships between health professionals and patients could be attenuated by communication techniques capable of promoting a better understanding of the patient about their health condition.

The Internet was questioned, being considered a useful tool, capable of clarifying issues, but also dangerous when showing information, sometimes not very understandable, with implications for patient safety.

Shared decision-making and patient/person-centered care

Effective communication and shared decision-making are inseparable for the practice of patient-centered care. Encouraging the participation of patients and family members in care actions cooperates towards joint responsibility vis-à-vis the patient’s care and safety, depending on the degree of knowledge asymmetry between health professionals and patients.

Effective communication between professionals and patients and the use of strategies that support patients in their health decisions would favor the building and strengthening of bonds and trust.

However, trust during healthcare provision is threatened by reports released by the media that highlight adverse and sensationalist events are resulting from healthcare, disseminating feelings of uncertainty and distrust in the social environment and contributing to the emergence of the “culture of fear.”

Contextual aspects that interfere with continuity of care and adherence to treatment

Given the definition of the terms “continuity of care” and “adherence to treatment”, the panel suggested a disaggregated and particularized debate, reinforcing the idea of complementarity between the two, but not excluding particular characteristics in the debate of each term. According to experts, “continuity of care” depends on how healthcare and services are physically organized within the system. On the other hand, “adherence to care” reflects objective and subjective aspects concerning individuals.

The relationship between the principle of integrality and patient/person-centered care

According to experts, a specific discussion on integrality would not fit the purposes of the panel without previously referring this topic to a concept that guided the debate. Integrality cannot be guaranteed exclusively by the practice of patient-centered care; the implementation of the elements that underpin this practice contributes to comprehensive care.

The incorporation of patient/person-centered care into technical and university training

The need to include disciplines and pedagogical approaches that discuss, guide and reflect on conducts and behaviors among the subjects was recognized, showing strategies capable of improving interpersonal relationships and transform care practices.

The influence of the private sector on the higher education of health professionals in Brazil, contributing to the predominance of market logic to the detriment of social practices and repercussions on healthcare production were the core of this debate. It is socially vital to rethink the training of health professionals to facilitate their insertion in the health systems, in a more interactive and less socially fragmented way.

Patient-centered care for safe care production

The legitimization of the participation of patients and their relatives/companions in the planning and implementation of healthcare was voiced as a strategy for incident prevention. According to experts, patient-centered care and safety are connected and complementary realms of quality. Thus, strategies to promote effective communication among health professionals and with patients/caregivers; the involvement of patients and companions in the care processes, and the provision of scientific evidence to support decision-making are needed.

Formulation or adaptation of patient/person-centered care measurement tools

According to experts, the use of patient-centered measurement tools appropriate to the Brazilian health context is capable of indicating the actual implementation of this practice in the production of healthcare. It would underpin a reorganization of health practices to make them more patient-centered. Recognizing the importance of this care practice to improve the quality of health services, we considered that it would be possible to adapt measurement tools already used in developed countries to the Brazilian context or to develop tools that are more attuned to the care culture of our nation.

Empirical work in Brazil on patient/person-centered care

The number of empirical studies in Brazil focused on the area of quality of healthcare, in general, is still insufficient. Emphasis was placed on encouraging the development of studies in this area, aiming at the possible reorganization of health practices to make them more patient-centered.

Discussion

The panel’s results were aligned with the literature regarding the various terminologies used to refer to the centrality of healthcare, admitting that there are particular nuances and attributes despite their interchangeability. The peculiar connotations depend on how care practices are implemented and the context in which care production occurs44 Lines LM, Lepore M, Wienner JM. Patient-centered, person-centered, and person directed care: They are not the same. Med Care 2015;53(7):561-563., considering that the contextual aspects determine variations in health practices, and it is fundamental to consider their role in interventions to improve the quality of care and patient safety99 Taylor SL, Dy S, Foy R, Hempel S, McDonald KM, Ovretveit J, Pronovost PJ, Rubenstein LV, Wachter RM, Shekelle PG. What context features might be important determinants of the effectiveness of patient safety practice interventions. BMJ Qual Saf 2011;20(7):611-617..

The context of the Brazilian reality is complex and encompasses the available conditions and resources, and the availability of patient-centered care studies. Even in the context of a country such as Sweden, challenges were identified for the practice of patient-centered care: low incentive to patient participation; the prioritization of objective aspects to the detriment of subjective elements; conflicts of power in professional relationships; inadequate infrastructure of health services; professionals who believe they already implement patient-centered practices; cultural diversity; and lack of healthcare records1010 Moore L, Britten N, Lydahl D, Naldermici O, Elan M, Wolf A. Barriers and facilitators to the implementation of person-centred care in different healthcare context. Scand J Caring Sci 2017;31(4):662-673..

It is central to identify strategies for patient and caregiver involvement towards reducing the avoidable harm produced by health services88 Picker Institute. Principles of patient-centered care. 2017.,1111 O'Hara JK, Lawton RJ. At a crossroads? Key challenges and future opportunities for patient involvement in patient safety. BMJ Qual Saf 2016;25(8):565-568., considering patient-centered care and patient safety as complementary and inseparable realms of quality.

Sharing decisions among health professionals, patients and companions was stated by panelists as a necessary skill in implementing patient-centered care. Studies show that clinical outcomes are more effective1111 O'Hara JK, Lawton RJ. At a crossroads? Key challenges and future opportunities for patient involvement in patient safety. BMJ Qual Saf 2016;25(8):565-568.,1212 Batalden M, Batalden P, Margolis P, Seid M, Armstrong G, Arrigan LO, Hartung R. Coproduction of healthcare services. BMJ Qual Saf 2016;25(7):509-517. when the patient is involved in the decisions regarding his treatment. However, sharing decisions in the health practice requires from professionals involved ethical responsibilities, given the asymmetric technical knowledge in the relationship with the patient. It is crucial for health professionals to show evidence and scientific uncertainties about treatment alternatives1212 Batalden M, Batalden P, Margolis P, Seid M, Armstrong G, Arrigan LO, Hartung R. Coproduction of healthcare services. BMJ Qual Saf 2016;25(7):509-517. clearly.

The idea that communication is a strategic element for quality healthcare has permeated several points of discussion in the panel, pointing out that its effectiveness favors shared decisions, the co-production of health services, increased patient safety, influencing the clinical results1212 Batalden M, Batalden P, Margolis P, Seid M, Armstrong G, Arrigan LO, Hartung R. Coproduction of healthcare services. BMJ Qual Saf 2016;25(7):509-517.,1313 Norouzinia R, Aghabarari M, Shiri M, Karimi M, Samami E. Communication barriers perceived by nurses and patients. Glob J Health Sci 2015;8(6):65-74. positively. Effective communication is one that improves the quality of healthcare1414 Paro HBMS. Empatia em estudantes de medicina no Brasil: um estudo multicêntrico [tese]. São Paulo: Faculdade de Medicina da Universidade de São Paulo; 2013.. But although communication is recognized as an essential tool, it still faces challenges in the physical and relational spheres. According to panelists, it is vital to create favorable conditions and improvement projects that can make communication effective and thus promote patient-centered care.

The quality of vocational training was raised as an issue that needs to be questioned, rethought, and perhaps reformulated. Some educational institutions have been implementing curricular changes in their training courses, incorporating disciplines that provide reflections on health practices1515 Cooper A, Gray J, Wilson A, Lines C, McCannon J, McHardy KJ. Exploring the role of communications in quality improvement: A case study of the 1000 Lives Campaing in NHS Wales. Commun Health 2018;8(1):76-84.. However, in general terms, knowledge fragmentation, growing specialization and technological valuations still prevail, with a predominance of the biological vision to the detriment of the social vision1515 Cooper A, Gray J, Wilson A, Lines C, McCannon J, McHardy KJ. Exploring the role of communications in quality improvement: A case study of the 1000 Lives Campaing in NHS Wales. Commun Health 2018;8(1):76-84..

It would be appropriate to establish situations favorable to the promotion of individual and organizational changes that facilitate the incorporation of patient-centered care as one of the objectives of the quality of care in the Brazilian health services.

In short, the experience reported here has allowed the aggregation of several views and perspectives on the person/patient-centered care and its underpinning theoretical elements. It contributed to the proposal of research bases that will allow an in-depth analysis on the person/patient-centered care, with potential aggregation of scientific evidence on paths towards its implementation and evaluation of effectiveness in the Brazilian health context.

Referências

  • 1
    Donabedian A. The quality of care. How can it be assessed? JAMA 1988;260(12):1743-1748.
  • 2
    Sands KEF. Patient-centred care: confessions of a pragmatism. BMJ Qual Saf 2016;25(12):909-910.
  • 3
    Institute of Medicine. Crossing the quality chasm: a new health system for the 21st century. Washington, DC: National Academies Press (US); 2001.
  • 4
    Lines LM, Lepore M, Wienner JM. Patient-centered, person-centered, and person directed care: They are not the same. Med Care 2015;53(7):561-563.
  • 5
    The Health Foundation. Person-centred care made simple: what everyone should know about person-centred care. London: The Health Foundation; 2014.
  • 6
    Zhao J, Gao S, Wang J, Liu X, Hao Y. Differentiation between two healthcare concepts: person-centered care end patient-centered care. Intern J Nurs Sci 2016;3:398-402.
  • 7
    Ahmad N, Ellins J, Krelle H, Lawrie M. Person-centred care: from ideas to action: Bringing together the evidence on shared decision making and self-management support. London: The Health Foundation; 2014.
  • 8
    Picker Institute. Principles of patient-centered care 2017.
  • 9
    Taylor SL, Dy S, Foy R, Hempel S, McDonald KM, Ovretveit J, Pronovost PJ, Rubenstein LV, Wachter RM, Shekelle PG. What context features might be important determinants of the effectiveness of patient safety practice interventions. BMJ Qual Saf 2011;20(7):611-617.
  • 10
    Moore L, Britten N, Lydahl D, Naldermici O, Elan M, Wolf A. Barriers and facilitators to the implementation of person-centred care in different healthcare context. Scand J Caring Sci 2017;31(4):662-673.
  • 11
    O'Hara JK, Lawton RJ. At a crossroads? Key challenges and future opportunities for patient involvement in patient safety. BMJ Qual Saf 2016;25(8):565-568.
  • 12
    Batalden M, Batalden P, Margolis P, Seid M, Armstrong G, Arrigan LO, Hartung R. Coproduction of healthcare services. BMJ Qual Saf 2016;25(7):509-517.
  • 13
    Norouzinia R, Aghabarari M, Shiri M, Karimi M, Samami E. Communication barriers perceived by nurses and patients. Glob J Health Sci 2015;8(6):65-74.
  • 14
    Paro HBMS. Empatia em estudantes de medicina no Brasil: um estudo multicêntrico [tese]. São Paulo: Faculdade de Medicina da Universidade de São Paulo; 2013.
  • 15
    Cooper A, Gray J, Wilson A, Lines C, McCannon J, McHardy KJ. Exploring the role of communications in quality improvement: A case study of the 1000 Lives Campaing in NHS Wales. Commun Health 2018;8(1):76-84.

Publication Dates

  • Publication in this collection
    28 Oct 2019
  • Date of issue
    Nov 2019

History

  • Received
    21 Oct 2017
  • Accepted
    20 Apr 2018
  • Published
    22 Apr 2018
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