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PERSPECTIVES AND CHALLENGES FOR IMPLEMENTING THE EXPERT PATIENT PROGRAM: A SCOPING REVIEW

PERSPECTIVAS Y DESAFÍOS PARA LA IMPLEMENTACIÓN DEL PROGRAMA “PACIENTE EXPERTO”: REVISIÓN DE ALCANCE

ABSTRACT

Objective:

to map diverse evidence on perspectives and challenges for implementing the Expert Patient Program.

Method:

this is a scoping review, guided by the method proposed by the JBI and which followed the recommendations set forth in the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews, with its research protocol registered in the Open Science Framework, with DOI:10.17605/OSF.IO/D7K6A. The search for studies was carried out in July 2022 in databases and in national and international portals of theses and dissertations.

Results:

the final sample consisted of six scientific articles, all written in English. Health professionals' qualification, to identify and qualify expert patients, management's commitment to the program, use of mobile technologies and Evidence-Based Practice are among the perspectives for implementation. The challenges are related to lack of understanding of the term "self-management" and to the deficit of public policies and financial investment.

Conclusion:

the results found emphasize the importance of implementing the Patient Expert Program for the public health context, mainly in relation to the population with chronic non-communicable diseases.

DESCRIPTORS:
Patient Participation; Health Plan Implementation; Self-management; Health Systems; Review

RESUMEN

Objetivo:

mapear diversa evidencia sobre las perspectivas y los desafíos para la implementación del Programa “Paciente Experto”.

Método:

revisión de alcance, orientada a partir del método propuesto por el JBI y en la que se siguieron las recomendaciones de Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews, con registro del protocolo de investigación en Open Science Framework (DOI:10.17605/OSF.IO/D7K6A). La búsqueda de estudio se realizó en julio de 2022, tanto en las bases de datos como en portales de tesis y disertaciones nacionales e internacionales.

Resultados:

la muestra final estuvo compuesta por seis artículos científicos, todos redactados en inglés. Entre las perspectivas para la implementación se incluyen las siguientes: calificación de los profesionales de la salud, para identificar y calificar pacientes expertos; compromiso de la gerencia con el programa; uso de las tecnologías móviles y Práctica Basada en Evidencia. Por el otro lado, los desafíos están relacionados con no comprender el término "autogestión" y con el déficit de políticas públicas e inversiones financieras.

Conclusión:

los resultados encontrados enfatizan la importancia de implementar el Programa “Paciente Experto” para el contexto de la salud pública, principalmente en relación con la población que padece enfermedades crónicas no transmisibles.

DESCRIPTORES:
Participación del Paciente; Implementación de un Plan de Salud. Autogestión; Sistemas de Salud; Revisión

RESUMO

Objetivo:

Mapear evidências sobre as perspectivas e desafios para implementação do Programa Paciente Experto.

Método:

Trata-se de uma scoping review, orientada a partir do método proposto pelo JBI, e seguiu as recomendações do Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews, com o protocolo de pesquisa registrado no Open Science Framework DOI:10.17605/OSF.IO/D7K6A. A busca pelos estudos foi realizada no mês de julho de 2022, e ocorreu nas bases de dados e em portais de teses e dissertações nacionais e internacionais.

Resultados:

A amostra final foi composta por seis artigos científicos, todos redigidos na língua inglesa. Entre as perspectivas para implementação, estão a qualificação dos profissionais de saúde, para identificar e qualificar pacientes expertos, o comprometimento da gestão com o programa, o uso das tecnologias móveis e a Prática Baseada em Evidência. Já os desafios são relacionados à falta de compreensão do termo "autogestão” e ao déficit de políticas públicas e investimento financeiro.

Conclusão:

Os resultados encontrados enfatizam a importância da implementação do Programa Paciente Experto para o contexto de saúde pública, principalmente, em relação à população portadora de doenças crônicas não transmissíveis.

DESCRITORES:
Participação do Paciente; Implementação de Plano de Saúde; Autogestão; Sistemas de Saúde; Revisão

INTRODUCTION

The increase in life expectancy with the demographic/epidemiological transition, experienced worldwide, has awakened new health needs, a fact evidenced by the global mortality trends. According to the World Health Organization (WHO), the number of chronic non-communicable diseases (CNCDs) as a cause of death increased from four to seven among the 10 that most caused fatalities. In Brazil, CNCDs correspond to 72% of all deaths11. Martins TCF, Silva JHCM, Máximo GC, Guimarães RM. Transição da morbimortalidade no Brasil: um desafio aos 30 anos de SUS. Ciênc Saúde Coletiva [Internet]. 2021 [cited 2022 Jul 17];26(10):4483-96. Available from: https://doi.org/10.1590/1413-812320212610.10852021
https://doi.org/10.1590/1413-81232021261...
-22. Malta DC, Andrade SSCA, Oliveira TP, Moura L, Prado RR, Souza MFM. Probability of premature death for chronic non-communicable diseases, Brazil and Regions, projections to 2025. Rev Bras Epidemiol [Internet]. 2019 [cited 2022 Jul 17];22:e190030. Available from: http://doi.org/10.1590/1980-549720190030
http://doi.org/10.1590/1980-549720190030...
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Based on this, the WHO included in its programs the encouragement of self-management, a term that is associated with activities carried out by individuals themselves, so that they can live well with chronic conditions and, more importantly, increase their own ability and confidence to deal with these issues33. World Health Organization. Sete das 10 principais causas de morte no mundo são doenças não transmissíveis. WHO [Internet]. 2020 [cited 2022 Jul 10]. Available from: https://news.un.org/pt/story/2020/12/1735642
https://news.un.org/pt/story/2020/12/173...
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Promotion of this new care model encourages patients to move from a passive role to an active one, as managers of their own care and health conditions, so that they can develop the ability to make decisions about their current disease state, with a view to generating behavioral changes in their lifestyles with self-care promotion44. Contel JC. La atención integrada y el reto de la cronicidad. Enferm Clin [Internet]. 2018 [cited 2022 Jul 12];28(1):1-4. Available from: https://doi.org/10.1016/j.enfcli.2017.12.002
https://doi.org/10.1016/j.enfcli.2017.12...
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Care self-management culture is complex and challenging, both for the patients, their family members and caregivers and for the health professionals who, most of the times, follow the routines of the already established health system44. Contel JC. La atención integrada y el reto de la cronicidad. Enferm Clin [Internet]. 2018 [cited 2022 Jul 12];28(1):1-4. Available from: https://doi.org/10.1016/j.enfcli.2017.12.002
https://doi.org/10.1016/j.enfcli.2017.12...
. This requires a break with the hegemonic paradigms currently experienced in health services, with a biologicist focus directed towards care of the disease and not to the individual in their completeness and integrality55. Cabral MFCT, Viana AL, Gontijo DT. Use of the complexity paradigm in the field of health: scope review. Esc Anna Nery [Internet]. 2020 [cited 2022 Jul 17];24(3):e20190235. Available from: http://doi.org/10.1590/2177-9465-ean-2019-0235
http://doi.org/10.1590/2177-9465-ean-201...
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In this context, health services and systems need to be able to carry out a new care model that implements self-management strategies as an important part of coping with chronic diseases, in order to stimulate and develop a self-responsibility culture that empowers and prepares the patients and involves the family members/caregivers. There is diverse that, in addition to health and well-being benefits, self-management strategies can reduce the economic impact of the increase in chronic conditions and provide for more sustainable health systems66. Dineen-Griffin S, Garcia-Cardenas V, Williams K, Benrimoj SI. Helping patients help themselves: a systematic review of self-management support strategies in primary health care practice. PLoS One [Internet]. 2019 [cited 2022 Jul 10];14(8):e0220116. Available from: https://doi.org/10.1371/journal.pone.0220116
https://doi.org/10.1371/journal.pone.022...
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One of these strategies is the Patient Expert Program, already consolidated in some countries such as Spain, which, in addition to improving people's experience and relationship with their health condition, aims at creating a support network among individuals who have common chronic characteristics, with similar conditions, in order to favor the achievement of individual or collective goals. Patients acquire a proactive and leadership role, and health professionals perform passive and observational activities77. Achury-Saldaña DM, Restrepo L, Munar MK, Rodríguez I, Cely MC, Abril N, et al. Efecto de un programa de paciente experto en insuficiencia cardiaca. Enferm Glob [Internet]. 2020 [cited 2022 Jul 10];19(57):479-506. Available from: http://doi.org/10.6018/eglobal.19.1.361801
http://doi.org/10.6018/eglobal.19.1.3618...
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The observer's role is fundamental for attracting potential expert patients. The professionals are responsible for identifying the essential characteristics, such as self-knowledge, responsibility, leadership, empathy and proactivity, among others, which may contribute in the education of this active, participatory and independent individual within the health system, who wants and is able to contribute to their peers' self-knowledge process88. Larson E, Sharma J, Bohrenc MA, Tunçalpd O. When the patient is the expert: measuring patient experience and satisfaction with care. Bull World Health Organ [Internet]. 2019 [cited 2022 Jul 17];97:563-9. Available from: http://doi.org/10.2471/BLT.18.225201
http://doi.org/10.2471/BLT.18.225201...
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However, the process to create and/or implement a new public health strategy or program involves several issues and conceptual and cultural readjustments. The implementation phase is considered the crucial moment for the materialization of public policies and/or health models, considering that the proposals are embodied in institutionalized action through the performance of implementing agents. It is at this stage that the perspectives and challenges for the implementation of actions become more evident and the production processes can be evaluated and analyzed99. Dalfior ET, Lima RCD, Andrade MAC. Implementação de políticas públicas: metodologia de análise sob o enfoque da política institucional. Saúde Debate [Internet]. 2015 [cited 2022 Jul 17];39:283-97. Available from: http://doi.org/10.5935/0103-1104.2015s005316
http://doi.org/10.5935/0103-1104.2015s00...
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The current research may significantly contribute to health promotion, and its results may support the practice of professionals who work in services that assist people with chronic conditions, by allowing them to know the main perspectives and challenges for implementing the Expert Patient Program.

Therefore, the objective was to map diverse evidence on the perspectives and challenges for the implementation of the Expert Patient Program.

METHOD

This is a scoping review (ScR), prepared based on the guidelines set forth in the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR)1010. Peters MDJ, Godfrey C, McInerney P, Munn Z, Tricco AC, Khalil H. Chapter 11: Scoping Reviews. In: Aromataris E, Munn Z, editors. JBI Manual for evidence synthesis [Internet]. 2020 [cited 2022 Jul 10]. Available from: https://doi.org/10.46658/jbimes-20-12
https://doi.org/10.46658/jbimes-20-12...
, with its research protocol registered in the Open Science Framework (OSF)(https://doi.org/10.17605/OSF.IO/D7K6A).

This type of study has the purpose of identifying, mapping and synthesizing the diverse evidence and gaps in existing knowledge around a given research field. The conduction process preserves methodological rigor through the following design: (1) identification of the research question; (2) identification of relevant studies; (3) selection of studies; (4) data analysis and extraction; and (5) data synthesis and presentation1010. Peters MDJ, Godfrey C, McInerney P, Munn Z, Tricco AC, Khalil H. Chapter 11: Scoping Reviews. In: Aromataris E, Munn Z, editors. JBI Manual for evidence synthesis [Internet]. 2020 [cited 2022 Jul 10]. Available from: https://doi.org/10.46658/jbimes-20-12
https://doi.org/10.46658/jbimes-20-12...
-1111. Tricco AC, Lillie E, Zarin W, O’Brien KK, Colquhoun H, Levac D, et al. PRISMA Extension for Scoping Reviews (PRISMA-ScR): Checklist and Explanation. Ann Intern Med [Internet]. 2018 [cited 2022 Jul 01];169(7):467. Available from: https://doi.org/10.7326/M18-0850
https://doi.org/10.7326/M18-0850...
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Stage 1 consisted in formulating the research question, using the PCC mnemonic strategy for such purpose, namely: (P [Population] - Patient; C [Concept] - Health plan implementation; Self-management; and C [Context] - Health systems). Thus, the question asked was as follows: Which are the perspectives and challenges for implementing a care self-management program?

In stage 2, before performing the searches in the databases, the descriptors that represent the study object were identified, using Medical Subject Headings (MeSH), for descriptors in English, and Descriptors in Health Sciences (Descritores em Ciências da Saúde, DeCS), for those in Portuguese. The descriptors selected were the following: patient participation, health plan implementation, self-management/health plan implementation, self-management, and health systems.

Thus, after selecting the descriptors, an open and extensive search was carried out in the literature and on the OSF platform as a way to ensure that there no published reviews or protocols with the study object in question or a similar theme. From such non-identification, the stages for consolidation of the ScR were followed. Subsequently, selection of the materials in the databases and in the Gray Literature was initiated in June 2022, through the Journals Portal of the Coordination for the Improvement of Higher Education Personnel (Coordenação de Aperfeiçoamento de Pessoal de Nível Superior, CAPES) and based on identification in the Federated Academic Community (Comunidade Acadêmica Federada, CAFe), as a way to standardize collection in the listed databases.

Selection of the studies consisted in reading the titles and abstracts of the texts retrieved from the theses and dissertations databases and repositories. The papers were screened to reach stage 3, according to eligibility criteria, by reading the full texts to check if they answered the guiding question and to extract the data. The analyses were carried out by pairs; therefore, a pair of reviewers worked independently and on the same day and time and, in case of disagreement, there was discussion for consensus. In case of doubts, the opinion of a third reviewer with expertise in the area of the study object was requested.

As for the eligibility criteria, the publications included were those that responded to the study objective and the guiding question, in any language and available in full electronically. Studies in editorial format, letters to the editor and opinion articles were excluded. Duplicate documents were considered only once. The only filter applied was “open access”.

The databases used to search for the studies were the following: PubMed; Scopus; Web of Science; Science Direct; Literatura Latino-Americana e do Caribe em Ciências da Saúde (LILACS); COCHRANE; The Education Resources Information Center (ERIC); The National Library of Australia’s Trobe (Trove); the Academic Archive Online (DIVA); the DART-Europe E-Theses Portal; Electronic Theses Online Service (EThOS); Repositório Científico de Acesso Aberto de Portugal (RCAAP); the National ETD Portal; Theses Canada; Latin America theses and dissertations; and CAPES theses and dissertations database.

In stage 4, the process to separate, summarize and report the essential data found was carried out during the full reading of the texts, determining whether they actually met the inclusion and exclusion criteria, using a Microsoft Excel Office ® spreadsheet, which allowed synthesis, data interpretation and basic statistical analysis of the extension, nature and distribution of the studies selected that comprise the final sample1212. Aromataris E, Munn Z, editors. JBI Reviewer's Manual [Internet]. JBI; 2020 [cited 2022 Aug 15]. Available from: https://doi.org/10.46658/JBIRM-19-01
https://doi.org/10.46658/JBIRM-19-01...
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Thus, the data were organized in this spreadsheet, analyzed and descriptively presented through figures, charts and graphs that ease visualization of the results, in compliance with stage 5. There was no need for appreciation by any Research Ethics Committee, as this was a research study conducted with public domain materials that did not involve human beings.

RESULTS

Originally, the search identified 236,047 studies in the databases and repositories of listed dissertations and theses, but only 230,758 were available in full for analysis. Figure 1 represents the flow of the selection process, and the final sample consisted of six studies.

Figure 1 -
Flowchart of the selection process adapted from PRISMA-ScR. Natal/RN, Brazil, 2022 (n=06)

As for the characterization of the sample that comprised this scoping review, the studies were published in 2003 (1; 16.66%), 2015 (1; 16.66%), 2017 (1; 16.66%), 2019 (1; 16.66%) and 2021, with two publications (33.33%). In relation to language, all of them are written in English (6; 100%).

Figure 2 shows the distribution of the countries where the studies were carried out.

Figure 2 -
Countries that developed the publications. Natal/RN, Brazil, 2022

Chart 1 presents the detailed characterization of the studies selected and the synthesis of the perspectives and challenges faced for implementing the Expert Patient Program.

Chart 1 -
Characterization of the studies regarding authors and year of publication, country where the research was carried out, type of study, synthesis of the perspectives and challenges for implementing the Expert Patient Program, and level of evidence. Natal/RN, Brazil, 2022 (n=06)

DISCUSSION

Currently, it is increasingly common to find people committed to health promotion and who value issues related to well-being and treatment continuity. This perspective does not centralize the responsibility for success only on health professionals, but includes patients and the population in general as active, participative and involved agents in this process1919. Satur RV, Bastos AFV, Abreu NR. Os serviços de saúde e a autogestão da saúde dos usuários de plano público e de plano privado. Rev Gest Sist Saúde [Internet]. 2020 [cited 2022 Jul 20];9(2):269-82. Available from: https://periodicos.uninove.br/revistargss/article/view/14681
https://periodicos.uninove.br/revistargs...
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A new protagonist emerges given this scenario, the expert patient, who is defined as an individual who actively assumes self-management of their health-disease process. They are also capable of developing and improving skills necessary for self-care, as well as seeking information about treatments and the best way to deal with the disease, in addition to being able to help other individuals in similar conditions, with a reliable educational role2020. Bezerril MS, Moreno IM, Ayllón FS, Lira ALBC, Cogo ALP, Santos VEP. Analysis of the expert patient concept according to Walker and Avant’s model. Texto Contexto Enferm [Internet]. 2022 [cited 2022 Jul 20];31:e20210167. Available from: https://doi.org/10.1590/1980-265X-TCE-2021-0167en
https://doi.org/10.1590/1980-265X-TCE-20...
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Led by patients with CNCDs, a program to promote self-management is not based on traditional patient education models, but on carrying out educational activities on the management of health conditions by the expert patients themselves, based on sharing experiences and tips necessary to be able to empower other individuals to self-manage their chronic diseases1313. Morsch P, Pelaez M, Veja E, Hommes C, Lorig K. Evidence-based programs for older persons in the Americas. Rev Panam Salud Publica [Internet]. 2021 [cited 2022 Jul 04];45:e91. Available from: https://doi.org/10.26633/RPSP.2021.91
https://doi.org/10.26633/RPSP.2021.91...
-1414. Pantoja T, Opiyo N, Lewin S, Paulsen E, Ciapponi A, Wiysonge CS, et al. Implementation strategies for health systems in low‐income countries: an overview of systematic reviews. Cochrane Database Syst Rev [Internet]. 2017 [cited 2022 Jul 02];12(9):CD011086. Available from: https://doi.org/10.1002/14651858.CD011086.pub2
https://doi.org/10.1002/14651858.CD01108...
,2121. Glasgow SM. The politics of self-craft: Expert patients and the public health management of chronic disease. SAGE Open [Internet]. 2012 [cited 2022 Jul 21];2(3). Available from: https://doi.org/10.1177/2158244012452575
https://doi.org/10.1177/2158244012452575...
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Thus, expert patients have potential conditions to reformulate the health system and decentralize the care figured in the medical authority, as the search for information about diagnoses, diseases, symptoms, medications, hospitalization and treatment costs makes them more active and knowledgeable about their diseases and factors related to them, as well as being able to educate other patients with similar conditions2222. Garbin HBR, Pereira Neto AF, Guilam MCR. The internet, expert patients and medical practice: an analysis of the literature. Interface (Botucatu) [Internet]. 2008 [cited 2022 Jul 20];12(26):579-88. Available from: https://doi.org/10.1590/S1414-32832008000300010
https://doi.org/10.1590/S1414-3283200800...
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In this way, health management does not occur unilaterally, but shared between patients and professionals, where there is a mutual commitment to health promotion, in addition to attributing values to health services and the patients' co-responsibility in the management of their chronic health status, so as to provide better treatment results1919. Satur RV, Bastos AFV, Abreu NR. Os serviços de saúde e a autogestão da saúde dos usuários de plano público e de plano privado. Rev Gest Sist Saúde [Internet]. 2020 [cited 2022 Jul 20];9(2):269-82. Available from: https://periodicos.uninove.br/revistargss/article/view/14681
https://periodicos.uninove.br/revistargs...
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Faced with this, there is a need to train health professionals so that they are able to identify possible expert patients and participate in their training as educators and specialists in the self-care promotion2020. Bezerril MS, Moreno IM, Ayllón FS, Lira ALBC, Cogo ALP, Santos VEP. Analysis of the expert patient concept according to Walker and Avant’s model. Texto Contexto Enferm [Internet]. 2022 [cited 2022 Jul 20];31:e20210167. Available from: https://doi.org/10.1590/1980-265X-TCE-2021-0167en
https://doi.org/10.1590/1980-265X-TCE-20...
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It is during formal education that health professionals and expert patients deepen theory and experience, in order to support the educational contribution to be conveyed to other apprentice patients. Therefore, it becomes necessary that these protagonists of the care self-management program be duly trained and qualified77. Achury-Saldaña DM, Restrepo L, Munar MK, Rodríguez I, Cely MC, Abril N, et al. Efecto de un programa de paciente experto en insuficiencia cardiaca. Enferm Glob [Internet]. 2020 [cited 2022 Jul 10];19(57):479-506. Available from: http://doi.org/10.6018/eglobal.19.1.361801
http://doi.org/10.6018/eglobal.19.1.3618...
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Development of a course in partnership with governmental and community organizations, of a training nature and with the objective of qualifying lay patients as experts, was carried out in a collaborative manner and culminated in the satisfaction of this population group, improving self-management of chronic diseases and health status and reducing the demands on services1717. Dongbo F, Hua F, McGoowan P, Yi-e S, Lizhen Z, Huiqin Y, et al. Implementation and quantitative evaluation of chronic disease self-management programme in Shanghai, China: randomized controlled trial. Bull World Health Organ [Internet]. 2003 [cited 2022 Jul 04];81(10):174-82. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2572423/pdf/12764513.pdf
https://www.ncbi.nlm.nih.gov/pmc/article...
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In the meantime, educational actions to promote self-management constitute a light and low-cost technology that may imply satisfactory changes in the Unified Health System health care model and in Brazilian health services in relation to monitoring of CNCDs2323. Aggio CM, Marcon SS, Galdino MJQ, Martins EAP, Lopes GK, Haddad MCFL. Efetividade do gerenciamento clínico por telemonitoramento para beneficiários com doenças crônicas na saúde suplementar. Saud Pesq [Internet]. 2022 [cited 2022 Jul 20];15(1):e9571. Available from: https://doi.org/10.17765/2176-9206.2022v15n1.e9571
https://doi.org/10.17765/2176-9206.2022v...
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Among the results of this review, two studies stand out, respectively carried out in the Netherlands and in the United States of America, which present the app use as a tool for self-management1515. Lewinski AA, Vaughn J, Diane A, Barnes A, Matthew J, CrowLey MD, et al. Perceptions of using multiple mobile health devices to support self‐management among adults with type 2 diabetes: a qualitative descriptive study. J Nurs Scholarsh [Internet]. 2021 [cited 2022 Jul 03];53(5):643-52. Available from: https://doi.org/10.1111/jnu.12667
https://doi.org/10.1111/jnu.12667...
-1616. Wit LM, Uden-Kraan CFV, Lissenberg-Witte BI, Melissant HC, Fleuren MAH, Cuijpers P, et al. Adoption and implementation of a web-based self-management application “Oncokompas” in routine cancer care: a national pilot study. Support Care Cancer [Internet]. 2019 [cited 2022 Jul 04];27(8):2911-20. Available from: https://doi.org/10.1007/s00520-018-4591-5
https://doi.org/10.1007/s00520-018-4591-...
. Employing mobile apps becomes useful for encouraging self-care among patients and as an educational resource to be used by health professionals2424. Galindo Neto NM, Sá GGM, Barbosa LU, Pereira JCN, Henriques AHB, Barros LM. Covid-19 and digital technology: mobile applications available for download in smartphones. Texto Contexto Enferm [Internet]. 2020 [cited 2022 Jul 21];29:e20200150. Available from: https://doi.org/10.1590/1980-265X-TCE-2020-0150
https://doi.org/10.1590/1980-265X-TCE-20...
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From this perspective, use of these apps in a care self-management program will entail benefits aimed at increasing adherence to the recommended therapy, monitoring periodicity of the medications, controlling treatment costs and tracking blood glucose and blood pressure levels, among other care measures1515. Lewinski AA, Vaughn J, Diane A, Barnes A, Matthew J, CrowLey MD, et al. Perceptions of using multiple mobile health devices to support self‐management among adults with type 2 diabetes: a qualitative descriptive study. J Nurs Scholarsh [Internet]. 2021 [cited 2022 Jul 03];53(5):643-52. Available from: https://doi.org/10.1111/jnu.12667
https://doi.org/10.1111/jnu.12667...
,1818. Harvey J, Dopson S, McManus RJ, Powell J. Factors influencing the adoption of self-management solutions: an interpretive synthesis of the literature on stakeholder experiences. Implement Sci [Internet]. 2015 [cited 2022 Jul 05];10(1):1-15. Available: Available: https://doi.org/10.1186/s13012-015-0350-x
https://doi.org/10.1186/s13012-015-0350-...
,2525. Nóbrega MPSS, Tibúrcio PC, Fernandes MC, Fernandes CSNN, Santos CSVB, Magalhães BMBS. Explorando o uso de aplicativos móveis para autogestão do tratamento em saúde mental: scoping review. Rev Enferm UFSM [Internet]. 2021 [cited 2022 Jul 21];11:e56. Available from: https://periodicos.ufsm.br/reufsm/article/view/64393/pdf
https://periodicos.ufsm.br/reufsm/articl...
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Recording and monitoring the routine experienced by the patients enable better monitoring by health professionals and the practice of supported self-management, with creation of goals and the methods used to achieve them1616. Wit LM, Uden-Kraan CFV, Lissenberg-Witte BI, Melissant HC, Fleuren MAH, Cuijpers P, et al. Adoption and implementation of a web-based self-management application “Oncokompas” in routine cancer care: a national pilot study. Support Care Cancer [Internet]. 2019 [cited 2022 Jul 04];27(8):2911-20. Available from: https://doi.org/10.1007/s00520-018-4591-5
https://doi.org/10.1007/s00520-018-4591-...
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Therefore, Telemonitoring through mobile apps can be seen as a possibility of improving communication between these population groups and promoting self-management, as it comprises interaction, clinical and behavioral data sharing, recognition of problems, decision-making improvements, definition of objectives and identification of modifiable behaviors. All of this will assist in adaptation and in better management of chronic diseases2323. Aggio CM, Marcon SS, Galdino MJQ, Martins EAP, Lopes GK, Haddad MCFL. Efetividade do gerenciamento clínico por telemonitoramento para beneficiários com doenças crônicas na saúde suplementar. Saud Pesq [Internet]. 2022 [cited 2022 Jul 20];15(1):e9571. Available from: https://doi.org/10.17765/2176-9206.2022v15n1.e9571
https://doi.org/10.17765/2176-9206.2022v...
,2626. Paré G, Poba-Nzaou P, Sicotte C. Home telemonitoring for chronic disease management: an economic assessment. Int J Technol Assess Health Care [Internet]. 2013 [cited 2022 Jul 20];29(2):155-61. Available from: https://doi.org/10.1017/S0266462313000111
https://doi.org/10.1017/S026646231300011...
.

Another point raised in the results of this study was the contribution of Evidence-Based Practice (EBP) to the implementation of a care self-management program1313. Morsch P, Pelaez M, Veja E, Hommes C, Lorig K. Evidence-based programs for older persons in the Americas. Rev Panam Salud Publica [Internet]. 2021 [cited 2022 Jul 04];45:e91. Available from: https://doi.org/10.26633/RPSP.2021.91
https://doi.org/10.26633/RPSP.2021.91...
-1414. Pantoja T, Opiyo N, Lewin S, Paulsen E, Ciapponi A, Wiysonge CS, et al. Implementation strategies for health systems in low‐income countries: an overview of systematic reviews. Cochrane Database Syst Rev [Internet]. 2017 [cited 2022 Jul 02];12(9):CD011086. Available from: https://doi.org/10.1002/14651858.CD011086.pub2
https://doi.org/10.1002/14651858.CD01108...
. Conceptualized as an approach capable of qualifying health care through the search for better current scientific evidence, with implementation in the practice and evaluation of the results, it incorporates the health professionals' clinical competence and the patients' particularities for decision-making2727. Galvão CM, Sawada NO. Prática baseada em evidências: estratégias para sua implementação na enfermagem. Rev Bras Enferm [Internet]. 2003 [cited 2022 Jul 21];56(1):57-60. Available from: https://doi.org/10.1590/S0034-71672003000100012
https://doi.org/10.1590/S0034-7167200300...
.

A study carried out in the United States of America1313. Morsch P, Pelaez M, Veja E, Hommes C, Lorig K. Evidence-based programs for older persons in the Americas. Rev Panam Salud Publica [Internet]. 2021 [cited 2022 Jul 04];45:e91. Available from: https://doi.org/10.26633/RPSP.2021.91
https://doi.org/10.26633/RPSP.2021.91...
indicates the commitment to the care self-management program as a Nursing mission; linked to this, there is evidence-based Nursing, in which technical and specific knowledge related to self-care is applied, adding itself to this context by complementing and supporting expert patients during the exchange of experience and tips on how to live with the disease in everyday life, shared in educational activities77. Achury-Saldaña DM, Restrepo L, Munar MK, Rodríguez I, Cely MC, Abril N, et al. Efecto de un programa de paciente experto en insuficiencia cardiaca. Enferm Glob [Internet]. 2020 [cited 2022 Jul 10];19(57):479-506. Available from: http://doi.org/10.6018/eglobal.19.1.361801
http://doi.org/10.6018/eglobal.19.1.3618...
,2828. Cruz DALM, Pimenta CAM. Prática baseada em evidências, aplicada ao raciocínio diagnóstico. Rev Latino-Am Enfermagem [Internet]. 2005 [cited 2022 Jul 20];13(3):415-22. Available from: https://www.scielo.br/j/rlae/a/BvWsnhPBBKJxScyHcShGNQc/?format=pdf⟨=pt
https://www.scielo.br/j/rlae/a/BvWsnhPBB...
.

It is worth emphasizing that management of the health systems should be committed to and value the training of expert patients, as knowing the importance of this type of coping with CNCDs can exert impacts on managers' decision-making regarding the definition of macro- and micro-political processes in the production of lines of care for people with chronic diseases2323. Aggio CM, Marcon SS, Galdino MJQ, Martins EAP, Lopes GK, Haddad MCFL. Efetividade do gerenciamento clínico por telemonitoramento para beneficiários com doenças crônicas na saúde suplementar. Saud Pesq [Internet]. 2022 [cited 2022 Jul 20];15(1):e9571. Available from: https://doi.org/10.17765/2176-9206.2022v15n1.e9571
https://doi.org/10.17765/2176-9206.2022v...
.

One of the challenges faced for the implementation of a self-management care program is defining and understanding this concept for the health professionals involved in this process1313. Morsch P, Pelaez M, Veja E, Hommes C, Lorig K. Evidence-based programs for older persons in the Americas. Rev Panam Salud Publica [Internet]. 2021 [cited 2022 Jul 04];45:e91. Available from: https://doi.org/10.26633/RPSP.2021.91
https://doi.org/10.26633/RPSP.2021.91...
,1616. Wit LM, Uden-Kraan CFV, Lissenberg-Witte BI, Melissant HC, Fleuren MAH, Cuijpers P, et al. Adoption and implementation of a web-based self-management application “Oncokompas” in routine cancer care: a national pilot study. Support Care Cancer [Internet]. 2019 [cited 2022 Jul 04];27(8):2911-20. Available from: https://doi.org/10.1007/s00520-018-4591-5
https://doi.org/10.1007/s00520-018-4591-...
.

For its implementation, it becomes necessary that the definition of self-management be understood in a clear and objective way and differentiated from self-care. Thus, the concept of self-care is related to the regulatory ability that allows people to carry out essential activities for the preservation of life, health, development and well-being. In turn, self-management is related to controlling a disease, mainly chronic ones, together with the patient's family, community and health professionals, discovering mechanisms and adopting strategies to achieve such control2929. Wilkinson A, Whitehead L. Evolution of the concept of self-care and implications for nurses: a literature review. Int J Nurs Stud [Internet]. 2009 [cited 2020 Jul 20];46(8):1143-7. Available from: https://doi.org/10.1016/j.ijnurstu.2008.12.011
https://doi.org/10.1016/j.ijnurstu.2008....
.

Furthermore, the implementation of a care self-management program constitutes a paradigm shift in the Brazilian context. The hegemonic health model with a focus on illness and fragmentation of the human body into parts undergoes a transition to the expanded concept of health and contemplation of the being in its multiple spheres (bio-psycho-social-spiritual-cultural), articulating all actors involved in health services, such as patients, health professionals and the community at large3030. Schenker M, Costa DH. Advances and challenges of health care of the elderly population with chronic diseases in Primary Health Care. Ciênc Saúde Colet [Internet]. 2019 [cited 2022 Jul 20];24(4):1369-80. Available from: https://doi.org/10.1590/1413-81232018244.01222019
https://doi.org/10.1590/1413-81232018244...
. Therefore, changes of this kind are considered challenging for traditional health services.

Therefore, this requires structural transformations in the way health programs are managed, in addition to demanding a change in the professionals' mentality and performance regarding the hegemony of authoritarian medical care and making room for a new patient profile, considered as active as duly informed subjects, knowledgeable about their diseases and who develop strategies to self-manage their care3131. Trillo JMM. Importancia de la implicación del paciente en el autocontrol de su enfermedad: paciente experto. Importancia de las nuevas tecnologías como soporte al paciente autónomo. Aten Primaria [Internet]. 2010 [cited 2022 Jul 21];42(Suppl 1):41-7. Available from: https://www.elsevier.es/es-revista-atencion-primaria-27-pdf-S021265671070007X
https://www.elsevier.es/es-revista-atenc...
.

The health professionals' difficulty accepting this new role assigned to the patients is also related to changes in their everyday practices linked to care, and they are not always prepared for this1414. Pantoja T, Opiyo N, Lewin S, Paulsen E, Ciapponi A, Wiysonge CS, et al. Implementation strategies for health systems in low‐income countries: an overview of systematic reviews. Cochrane Database Syst Rev [Internet]. 2017 [cited 2022 Jul 02];12(9):CD011086. Available from: https://doi.org/10.1002/14651858.CD011086.pub2
https://doi.org/10.1002/14651858.CD01108...
.

The challenges for implementing programs in health services are also related to the creation of public policies, funding and management1313. Morsch P, Pelaez M, Veja E, Hommes C, Lorig K. Evidence-based programs for older persons in the Americas. Rev Panam Salud Publica [Internet]. 2021 [cited 2022 Jul 04];45:e91. Available from: https://doi.org/10.26633/RPSP.2021.91
https://doi.org/10.26633/RPSP.2021.91...
-1414. Pantoja T, Opiyo N, Lewin S, Paulsen E, Ciapponi A, Wiysonge CS, et al. Implementation strategies for health systems in low‐income countries: an overview of systematic reviews. Cochrane Database Syst Rev [Internet]. 2017 [cited 2022 Jul 02];12(9):CD011086. Available from: https://doi.org/10.1002/14651858.CD011086.pub2
https://doi.org/10.1002/14651858.CD01108...
,1818. Harvey J, Dopson S, McManus RJ, Powell J. Factors influencing the adoption of self-management solutions: an interpretive synthesis of the literature on stakeholder experiences. Implement Sci [Internet]. 2015 [cited 2022 Jul 05];10(1):1-15. Available: Available: https://doi.org/10.1186/s13012-015-0350-x
https://doi.org/10.1186/s13012-015-0350-...
and depend on the involvement of different actors, such as managers, technicians, politicians and social agents in the municipal, state and federal spheres3232. Flexa R. Processo decisório em sistemas de saúde: uma revisão da literatura. Saude Soc [Internet]. 2018 [cited 2022 Jul 24];27(3):729-39. Available from: https://doi.org/10.1590/S0104-12902018170509
https://doi.org/10.1590/S0104-1290201817...
.

Financial incentives in programs centered on people and health are crucial for promoting care management, expanding the patients' autonomy in making their choices and changing the reality they live in3333. Nossa PN. Aging, financing, and innovation in the health care system: a necessary discussion to maintain the right to health. Saúde Soc [Internet]. 2020 [cited 2022 Jul 24];29(2):e20008. Available from: https://doi.org/10.1590/S0104-12902020200081
https://doi.org/10.1590/S0104-1290202020...
. With this, self-management programs and training of expert patients corroborate with the paradigm shift in the health model and should arouse the management's interest regarding the importance of implementing management of CNCDs in health systems.

Therefore, it becomes necessary for health service managers to be aware of the care provided in the context of chronic diseases and longevity, in order to manage them effectively and to promote well-being and autonomy, considering the literacy ability in health and the digital skills of this population group in the short- and medium-term3333. Nossa PN. Aging, financing, and innovation in the health care system: a necessary discussion to maintain the right to health. Saúde Soc [Internet]. 2020 [cited 2022 Jul 24];29(2):e20008. Available from: https://doi.org/10.1590/S0104-12902020200081
https://doi.org/10.1590/S0104-1290202020...
.

Consequently, the use of technologies by expert patients for care self-management is also highlighted; however, its accessibility does not happen in the same way among all patients, mainly among aged ones, but is seen as a future possibility for younger population segments1515. Lewinski AA, Vaughn J, Diane A, Barnes A, Matthew J, CrowLey MD, et al. Perceptions of using multiple mobile health devices to support self‐management among adults with type 2 diabetes: a qualitative descriptive study. J Nurs Scholarsh [Internet]. 2021 [cited 2022 Jul 03];53(5):643-52. Available from: https://doi.org/10.1111/jnu.12667
https://doi.org/10.1111/jnu.12667...
-1616. Wit LM, Uden-Kraan CFV, Lissenberg-Witte BI, Melissant HC, Fleuren MAH, Cuijpers P, et al. Adoption and implementation of a web-based self-management application “Oncokompas” in routine cancer care: a national pilot study. Support Care Cancer [Internet]. 2019 [cited 2022 Jul 04];27(8):2911-20. Available from: https://doi.org/10.1007/s00520-018-4591-5
https://doi.org/10.1007/s00520-018-4591-...
,3131. Trillo JMM. Importancia de la implicación del paciente en el autocontrol de su enfermedad: paciente experto. Importancia de las nuevas tecnologías como soporte al paciente autónomo. Aten Primaria [Internet]. 2010 [cited 2022 Jul 21];42(Suppl 1):41-7. Available from: https://www.elsevier.es/es-revista-atencion-primaria-27-pdf-S021265671070007X
https://www.elsevier.es/es-revista-atenc...
.

Using Telemonitoring as a technological tool to support self-management faces other challenges, such as the initiative of management and funding entities. However, even if financial investments are necessary for implementation, the benefits for patients with chronic diseases outweigh the related expenses3434. Paula AC, Maldonado JMSV, Gadelha CAG. Telemonitoring and business dynamics in health: challenges and opportunities for the Brazilian Unified Health System. Rev Saude Publica [Internet]. 2020 [cited 2022 Jul 21];54:65. Available from: https://doi.org/10.11606/s1518-8787.2020054001996
https://doi.org/10.11606/s1518-8787.2020...
.

The contributions of this study to the Nursing and Health areas are based on the mapping of fundamental perspectives to guide implementation of the self-management program in Brazil, presenting experiences that, even with the challenges faced, proved to be successful and possible to be reproduced at the national level.

This study has limitations related to the predominance of studies with low levels of evidence and because there is still no model program for self-management the care implemented in the Brazilian context.

CONCLUSION

The current study gathered the main scientific evidence on the perspectives and challenges for implementing a self-management care program. System managers, as well as health professionals, mainly nurses, need to know and understand the importance of the Expert Patient Program within the reality of the services where they work, with a view to reducing morbidity and mortality and increasing the patients' quality of life.

Therefore, it is concluded that, despite the challenges for implementing this program, the results obtained in other countries justify its consolidation, with the perspective of future satisfactory results regarding the managerial aspects of self-care and, mainly, due to the results achieved by the patients involved.

In this way, it is hoped that this paper can encourage the production of new studies that explore the theme of expert patients in the Brazilian health system as a way of coping with CNCDs and promoting encouragement of self-care, self-management of their health conditions and, therefore, the incentive to improve quality of life.

ACKNOWLEDGMENT

To the Coordination for the Improvement of Higher Education Personnel and the National Council for Scientific and Technological Development for the scholarships granted.

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NOTES

  • ORIGIN OF THE ARTICLE

    Produced for the curricular component - Special Topics III, Expert Patient: Approach and theoretical and philosophical perspectives, presented to of the Graduate Program in Nursing at Universidade Federal do Rio Grande do Norte, in 2022.

Edited by

EDITORS

Associated Editors: Bruno Miguel Borges de Sousa Magalhães, Maria Lígia dos Reis Bellaguarda. Editor-in-chief: Elisiane Lorenzini.

Publication Dates

  • Publication in this collection
    29 May 2023
  • Date of issue
    2023

History

  • Received
    04 Sept 2022
  • Accepted
    14 Dec 2022
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