Patient safety in hospital care: a review of the patient’s perspective Segurança do paciente no cuidado hospitalar: uma revisão sobre a perspectiva do paciente Seguridad del paciente en el cuidado hospitalario: una revisión sobre la perspectiva del paciente

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Introduction
Patient safety became a worldwide concern in the early 2000s following the release of the report To Err Is Human: Building a Safety Health System by the U.S. Institute of Medicine (IoM) 1 . Despite the advances, new challenges and priorities have emerged in the two decades since its publication, such as diagnosis errors and outpatient safety 2 . During this period, efforts have been made to listen to and learn from reports of adverse events provided by patients 2,3 .
In this sense, since 2013 the Patients for Patient Safety program of the World Health Organization (WHO) has encouraged the incorporation of patient, family and community experience at all levels of health care, aiming at their involvement and empowerment. The ultimate goals of this program are to defend and support patients so they may take ownership of their own care; to give a voice to patients and people in charge of health care; and to promote partnerships among patients, family members, community, health care staff, policy makers and academia 4 .
In line with international initiatives in the area of patient safety, Brazilian National Program for Patient Safety (PNSP, in Portuguese) advocated patient participation in one of the four core areas, emphasizing the importance of humanization, effective communication and viewing patients as a relevant factor in preventing the occurrence of incidents and adverse events 5 . The literature on patient safety describes incidents as events or circumstances that might have resulted, or resulted, in unnecessary harm to the patient. In turn, adverse events are incidents that resulted in harm to the patient, extending hospital stay or disability 5 . In short, they are undesirable results during health care provision deriving from a range of contributing factors, defined as circumstances, actions or omissions, which play a key role in the origin, development or increased risk of an incident 5,6 .
Considering that patients and family members identify incidents and adverse events that go undetected by staff, the incidents reported by staff are those with the most immediate and visible clinical impact. As the health care experiences perceived by patients happen in different clinical situations over the years, they may often be invisible to most staff, not only because the latter are reluctant to recognize them, but also due to lack of available information 7 .
Patients are able and willing to report incidents and contributing factors without embarrassment or harm, providing new and valuable information about the type and frequency of these occurrences, which do not necessarily appear in health care staff records and notification systems 6 . Even when patients' reports on care safety problems overlap with those of staff, they can provide additional information, helping to better understand the scope of such problems and the factors that contribute to their occurrence 8 . Thus, patients' reports offer a different perspective on hospital care safety, and their experience, which usually goes undetected in information systems, can contribute to improve the quality of health care and shared decision-making.
The issues related to health care safety identified by patients cover a wide spectrum of problems, such as medication errors, care communication and coordination, infections, delayed diagnosis and treatment, failures in blood collection, procedures in the wrong patient or wrong part of the body and faulty equipment 9,10 . Therefore, the analysis of incidents identified by patients, besides those reported by staff, can contribute to a more complete overview of safety issues 7 . In this sense, knowing the views of patients and relatives has become a priority, helping to build patient-centered care processes and to improve the performance of clinical teams and organizations 11 .
The concepts of patient empowerment, engagement, experience and participation have been used to support strategies and initiatives aimed at organizational learning and improved quality of health care services, especially patient safety 12 . Intensely debated in several countries 10,11,13 , this issue is still poorly addressed in developing countries like Brazil.
Given the importance of the view of patients and relatives to patient safety and the lack of studies on this subject in Brazil, the goal of this study is to review the literature on incidents and adverse events and their contributing factors in hospital care, described according to the patient's perspective.

Method Type of study
This is a literature review with a systematic search. The guiding question of the study was: "What are the incidents and adverse events and their contributing factors identified by patients, their families and caregivers in hospital care?".

Search and selection
The following information sources were chosen for the article search: MEDLINE via PubMed, Scopus via Portal de Periódicos from Brazilian Graduate Studies Coordinating Board (CAPES) and LILACS via Virtual Library of Health (VHL). These databases were chosen for containing a wide range of national and international studies on health care with public access or available through a library.
The search terms were selected after an exploratory reading of the subject. The Medical Subject Headings Terms (MeSH) of the U.S. National Library of Medicine (NLM) provided the following terms: patient safety; patient-centered care; patient participation; risk management and consumer participation. In turn, the following terms were found as health science descriptors in Latin American and Caribbean Center on Health Sciences Information -Bireme (DeCS): segurança do paciente (patient safety); perspectiva do paciente (patient preference); cuidado centrado no paciente (patient-centered care); and participação do paciente (patient participation). After testing the bibliographic databases, the following terms were used: segurança do paciente (patient safety); notificações de pacientes (patient reports); perspectiva do paciente (patient perspective); cuidado centrado no paciente (patient-centered care); engajamento do paciente (patient engagement); participação do paciente (patient participation); experiência do paciente (patient experience); notificações da experiência do paciente (patient reporting experience); and notificações de incidentes (reporting incidents). The combination of these terms comprised the search strategies described in Table 1. The data were collected in June-August 2019 and updated in March 2020. Zotero Standards One software (https://www.zotero.org/) was used to manage references, eliminate duplicates and organize the articles.

Eligibility criteria
The inclusion criteria for the articles were: focus on patient safety from the patient's perspective; occurrence of incidents and/or adverse events and contributing factors from the patient's perspective; empirical quantitative or qualitative study based on hospital care, during hospitalization or after hospital discharge, of adult patients (over 18 years old); information from actual patients or their relatives and caregivers.
The exclusion criteria for the studies were: perspective of staff and students; patient safety specifically related to medication use; patient safety in the treatment of specific diseases such as cancer, diabetes, lung and orthopedic diseases, circulatory, digestive and renal system diseases, among others; in obstetric or maternity care; in primary health care; in pediatrics and neonatology care; in mental health; in diagnostic and therapeutic use of radiation-generating devices; in laboratories; in dentistry; in home care; and studies specifically addressing patient satisfaction. Other studies not included in the above categories but which were unrelated to the research subject, such as those addressing violence, environmental health and health surveillance, were also excluded. Also excluded were reviews, opinion articles, editorials, letters, interviews, books and book chapters, theses, monographs, dissertations and term papers, plus gray literature. Therefore, the focus was on articles resulting from empirical studies with different methodological approaches, published in scientific journals and submitted to peer review. This stage also included the reading of titles and abstracts of all studies cited in the bibliographic references of the 24 selected works. In this stage, 16 articles were selected for complete reading, and five articles were included after the exclusion criteria had been applied.

Identification of studies, selection and data extraction
The studies selected for the review were complete, available and accessed through a library, written in English, Spanish and Portuguese, regardless of the methodological approach (quantitative or qualitative) and study design (including experimental, observational, semi-experimental and correlational, among others), and published between January 2008 and December 2019. The time frame was chosen due to the importance of the Patients for Patient Safety program 4 created by WHO in 2013 to expand the global discussion on the subject; therefore, the period spanning from 2008 to 2019 was selected for this review, that is, 5 years before and 5 years after the aforementioned program was instituted, in order to identify both publications that provide input for the program and those that report on its results or developments. The selected articles were organized in a synoptic table featuring the following variables: authors; year of publication; study location/country; study design; goals; main results. The terminology used to define incidents and adverse events was also considered.
A narrative synthesis of the information collected from each article was carried out, grouped into categories according to the content analysis, namely: (i) terminology used to define incidents and adverse events; (ii) incidents and adverse events identified by patients, relatives and caregivers; (iii) patients' perception of factors contributing to unsafe care; and (iv) patients' suggestions to prevent the occurrence of incidents and adverse events. The first category was based on the International Classification for Patient Safety -ICPS) 6 , whose key concepts are: notifiable circumstance, near miss, incidents and adverse events. The second and third categories considered the six WHO international Cad. Saúde Pública 2020; 36(12):e00223019 patient safety goals, adopted in Brazil: (1) identify patients correctly; (2) improve effective communication; (3) improve the safety of highly-alert medications; (4) ensure safe surgery; (5) reduce the risk of health care-associated infections; (6) reduce the risk of patient harm from falls 14 . The fourth category resulted from the need for organizational learning derived from the perspective of patients and relatives on safer care.
The selected articles were read in full and their content related to the above categories. The methods and results were described, with the latter highlighted, analyzed and interpreted in light of the theoretical and conceptual literature on health care quality and patient safety. The relevance of the previously defined categories was confirmed, and therefore they were reinforced in the reading and maintained. Some studies covered more than one category.

Results
Following the removal of duplicates from the initial 2,805 articles identified, 2,686 articles remained. After the reading of titles, abstracts and keywords, 2,519 studies were excluded; 42.8% were excluded for addressing patient safety from the perspective of staff, 18.5% were not related to the subject and 7.7% addressed patient safety in using medication ( Table 2).
After this stage, application of the inclusion and exclusion criteria resulted in the selection of 172 articles. At the end of this process, 29 articles were selected considering the guiding question ( Figure 1 As for study design, it was observed that most of the articles (37.9%) used mixed methods 15,16,17,18,19,20,21,22,23,24,25 and the same proportion (31%) adopted qualitative 26,27,28,29,30,31,32,33,34 and quantitative approaches 19,35,36,37,38,39,40,41 . There was variation in sample size and type according to quantitative and/or qualitative design. One quantitative study included 25,098 participants 19 , while a qualitative study was carried out with 11 patients 28 .
The study that identified the highest proportion of patients that were concerned about or reported incidents and adverse events in health care was conducted in the United States, with a 65% occurrence rate among sampled cases 28 . The work with the lowest proportion was also carried out in that country and found 4.3% of reports of some type of incident 19 .

Terminology used to define incidents and adverse events
Considering the ICPS 6 , different terminologies and concepts were identified to address patient safety problems, such as: notifiable circumstances, near miss, incidents and adverse events (Box 2).
In a study carried out in the United States, 56% of patients reported having suffered adverse events to medication 28 . In Brazil, incidents related to drug administration were reported by 78.5% of the sampled patients, such as switched medication, wrong dose and allergic reaction 18 . Concern about medication safety was also mentioned in the Chinese study, in which only 14% of patients considered themselves to be aware of the possible adverse effects of drugs used, while 48% said they had some knowledge and 38% reported not knowing anything 40 .
Concerns about hospital-acquired infections appeared in 13 studies 16,17,19,21,23,27,28,36,37,38,39,40,43 . In an Argentinian study, health care-associated infections (HAI) was the most frequent adverse  Articles included after reading of references of selected articles (n = 5) event, reported by 8.5% of patients. In turn, a study conducted in the United States reported that 184 patients experienced diagnostic errors, 85 (46.2%) of whom also reported HAI 28 . Despite the concerns described in the study conducted in China, 28% of patients were not aware of the possibility being infected in the hospital environment 40 .

Box 2
Terminology used in the selected studies to define incidents and adverse events.
Source: prepared by the authors.

Terminology Study (year) Concept adopted
Notifiable circumstance Bezerra et al. 18 (2016) A circumstance with significant potential to harm the patient.
Near miss Sahlström et al. 35  Weissman et al. 43 (2008) An incident that harmed the patient.
Reports of falls appeared in seven studies 16,18,19,21,23,34,43 . In one case the patient fell when trying to get up without the nurse's help, as his request was not answered. Moreover, the accident was reported merely as a fall resulting in severe headache, with no professional assessment of the patient's condition after the adverse event 18 . The issue of pressure injury appeared in three studies with patients that had been discharged 19,23,43 .
Patient reports also mentioned more serious problems such as bleeding, bruising, pain and fractures, and central nervous system, obstetric, respiratory, cardiac, gastrointestinal and endocrine complications. Also reported were life-threatening events or risk to important organs, non-procedural harm, adverse events related to fluid control and venous thromboembolic events 17,19,23 .

Patients' perception of factors contributing to unsafe care
Patients' perception of safety can influence the way they and their relatives engage in safe practices 38 . Contributing factors related to communication, identification and hand washing were men-Cad. Saúde Pública 2020; 36(12):e00223019 tioned in patients' reports, related to six safety goals. Other factors were also reported related to health care staff and team, and material and structural resources.
Poor dialogue between staff and patients was emphasized. In a US study, patients most often complained of: not being heard, being ignored by the health team, reduced time of staff with patients and poor staff teamwork 17 . In some cases patients reported feeling they were just a number, with no proper care being given to the actual person behind the disease 30 .
Being treated with dignity and respect was another concern related to patient safety, as were staff training, care organization and planning, and roles and responsibility of the health care team 20,23 .
Four types of behavior problems were identified: staff ignoring patients' knowledge; disrespect for patients by using pejorative language; failure to communicate information to patient and family; and staff manipulating information and using fear to influence the decisions of patients and relatives, or to misinform/withhold information from patients 28 .
Poor continuity and coordination in providing care were identified by patients as contributing factors to the occurrence of patient safety problems 17,30 . The presence of multiple staff often gave them a sense of fragmented care. According to patients, doctors were unable to provide a diagnosis based on the patient's medical history, rather than only on manifest conditions and symptoms 30 . In this sense, communication is directly related to decision-making shared between staff and patients regarding diagnosis or treatment 36 .
Problems with patient identification were mentioned in six studies 16,18,36,37,38,39 . A Mexican study highlighted that four (3.1%) patients were mistaken for others 37 , and in Switzerland patients reported having been mistaken for other patients, called by the wrong name and receiving care not intended for them 39 .
Hand washing as a means to prevent HAI featured in four studies 27,33,37,39 Patients were able to identify the lack of hand washing among staff and its importance 27 . However, in a Canadian study, few reported having asked staff to wash their hands 38 . In a Chinese study, 68% of patients were willing to remind staff to wash their hands 40 .
In the only Brazilian study 18 , omission of care was reported by three patients: one reported that no one monitored his reactions to the medication after reporting discomfort; another patient, in bed rest for 30 days, got up on her own and fell over the waste bins after unsuccessfully requesting nursing care; and in a third case, the nursing staff requested a medical evaluation after identifying increased blood pressure levels, to no avail. The incidents reported by patients were attributed to problems related to communication, high staff turnover and work overload.
Problems related to staff training and responsibility, staff management and workload, supervision, leadership and health team-related factors were mentioned by patients as potential triggers of incidents and adverse events 32 . Besides those aspects, issues related to material and structural resources in hospitals may interfere with patients' perception of care quality 16,20,32 . Complaints about comfort and entertainment during hospitalization, food, parking and long waiting times were also identified 16 .

Patients' suggestions to prevent the occurrence of incidents and adverse events
One of the key strategies to improve patient safety is to engage patients in recognizing risks and preventing harm 38 . A study carried out in England 20 developed an action plan based on patients' perspectives which contained some simple measures: changes in furniture arrangement in wards and rooms, and the provision of a container to store medication brought by patients from home, helping them manage administration. On the other hand, there were also more complex and costly initiatives, such as investigation of delays and staff training.
Cad. Saúde Pública 2020; 36(12):e00223019 Four main topics were listed based on suggestions by patients to mitigate incidents and adverse events. The first and most common related to checking and reviewing treatment processes, managing risk and reviewing patient care, accounting for 43.2% of suggestions. These included attention to checklists, adequate supplies and facilities, and familiarity of staff with patients' illnesses, laboratory results, allergies and information available before appointments and during care.
The second topic, staff professionalism and competence, was mentioned in 27.2% of the suggestions. They highlighted the importance of ensuring the necessary professional skills, including during staff holidays and leaves. Also stressed were the reduction of nursing turnover rates to ensure the flow of information and the importance of exchanging information among co-workers.
The third topic was the need for cooperation among patients, families and staff, mentioned in 21.1% of suggestions. Patients stressed that incidents can be prevented by listening to patients and family members about issues related to care and with clearer guidelines on admission and discharge. Also included in this topic was the need for empathy in treating patients. The last topic was related to improvement in environment safety (9.5%), including locking doors in the case of patients with impaired memory, checking the safety of beds and keeping the corridors clear to prevent patients from tripping 35 .

Discussion
This review identified the main incidents, adverse events and contributing factors related to safety in the provision of hospital care from the perspective of patients, as well as variation in current terminology used in the examined studies.
Some terminologies adopted in the reviewed articles differ from those recommended by WHO in the IPCS, which made it difficult to compare results, especially in terms of frequency of occurrence. Variation in terminology and non-adoption of international taxonomy may interfere with organizational learning and the understanding and accurate reporting of incidents and adverse events 6 . It should be noted that the term "error" was mentioned for medical error, diagnostic error, clinical error and error with harm. It is noteworthy that "error" is understood in this sense as an unintentional attitude, as a failure to execute a plan or the execution of an incorrect plan by all health care staff, not only the physician 44 . Sometimes error was understood by patients as resulting from specific technical procedures and human error; in other cases it was related to tiredness and lack of organization. In the former interpretation error is attributed to a specific, one-off situation, regardless of the context, while in the latter it results from multiple variables in the system 31 .
Problems related to stages of medication use 15,16,17,18,19,20,21,23,25,26,27,28,35,36,37,38,39,40,41,42,43 stood out among incidents and adverse events reported by patients in hospital care, compared to other care processes. This may be related to previous experiences with medication use, which can positively influence self-care 18,26 , contributing to the prevention of incidents and adverse events. Another important finding was issues related to communication, which play a key role in all aspects of health care quality. Communication-related problems were reported by patients as contributing factors to and potential triggers of incidents and adverse events 15,16,17,18,20,23,28,29,30,31,32,35,38,41 .
The results of this review corroborate previous studies aimed at improving health care quality 9,10 that highlighted problems related to the process of using medication and especially to communication. The latter is a relevant and legitimate concern given the evidence that communication failures are associated with the occurrence of adverse events 45 . In turn, medication errors are among the most common incidents in health care, potentially happening in all stages of the health care process 46 and sometimes also related to communication 47 .
As for factors contributing to the occurrence of incidents and adverse events, the most cited were related to (i) staff, such as professional competence and physical and mental health; (ii) work pro-Cad. Saúde Pública 2020; 36 (12):e00223019 cesses, such as communication failures; (iii) working environment, such as staff numbers and skills, workload and shifts; and (iv) organization and management, such as financial resources and restrictions and organizational structure 16,18,31,41,48 .
It is essential to recognize, understand and mitigate the identified contributing factors, among which communication failures deserve special attention. Effective communication between staff and patients plays a key role in patient-centered care, favoring bonding between staff and patients, health literacy and education, and adherence to self-care and the proposed treatment. In this sense, patients and staff should make joint decisions, which encourages transparency and the appreciation of patients' values, beliefs and choices during care 19 .
Acknowledging that patients hold important and unique knowledge about their health status is essential for effective and safe treatment 29 . Furthermore, knowledge and understanding of the experiences of patients and relatives when adverse events occur provide important information to strengthen the safety culture at the organizational level. Sharing those perspectives can encourage open communication and a change in patient safety culture, which should not be based on individual guilt or stigma, although deliberate neglect is unacceptable 30 .
Patient involvement in care safety, whether related to their own care or future improvement of ongoing processes, is increasingly viewed as a means to reduce risks associated with health care, albeit dependent on the type of cooperation patients are able to establish with staff 38 . Ideally, patients and family members involved in care become more active and engaged in discussions and decision making, including identifying unsafe situations before incidents occur, contributing to the safe use of medication based on their knowledge of the prescribed drugs and of possible side effects or adverse events, taking part in initiatives to control infections and promote hand washing, and encouraging open communication about complications and adverse events to favor a non-punitive culture and organizational learning 49 .
Such benefits are hindered by fear and by patients being unaware that their attitude towards treatment can help reduce the risk of an incident or adverse event 26,41 . Educational campaigns can minimize this knowledge gap and even create situations conducive to improved care 18,39 . Similarly, individual traits of patients can influence the reporting of incidents, such as knowledge and beliefs about safety and emotional experiences with health care provision, including those related to demographics and also diseases, like stage and severity, symptoms, treatment plan 50 and previous experience with the occurrence of incidents and adverse events 26,31,50 . Compared to staff, patients generally have a different view of what incidents and adverse events are 9 . They have a broader understanding of health care problems as they consider their entire care background, including the different levels of care and the household and community to which they belong, and are able to identify incidents and adverse events overlooked by staff 7 . Care safety concerns reported by patients can be ignored by current incident and adverse event notification systems, which are mostly focused on notifications by staff. However, their point of view is essential to detect adverse events 11 . The perspective of patients and relatives is valuable in many areas, including organizational environment design, care planning, notification of incidents and adverse events, and even analysis of root causes 51 and proposition of solutions.
This reveals the need for initiatives aimed at patient safety which also consider the opinion of patients, the main beneficiaries or victims of the health system. And important contribution in this sense would be to reformulate incident notification systems to include the views of patients, especially those who have experienced problems while using health care services. This should evidently be aligned with other educational strategies and notification systems for staff. A possible complementary measure is the creation of virtual communication spaces for patients to share their experiences, as it is likely that patient safety incidents reported by them in such spaces will not be picked up by other reporting means 27,36 . Besides providing greater reach, social media and ombudsperson services have the advantage of being independent or outside the institutional environment.
The development of tools to identify relevant circumstances, incidents or adverse events from the viewpoint of patients is a challenge that requires cooperation between family members and staff. Thus, the literature stresses the importance of incorporating the opinion of patients in current information collection systems aimed at monitoring and ensuring patient safety 11,51 . A further need is to acknowledge the emergence of new socio-psychological themes, focused on the cognitive and Cad. Saúde Pública 2020; 36(12):e00223019 emotional aspects of health care related to patients and relatives, as an issue of patient safety 7 and, above all, patient-centered care 19 .

Limitations and contributions of the study
Despite increasing attention to the subject since 2013 4 and the steady recognition over time of the active and critical role played by patients, the volume of selected studies fell short of expectations. Therefore, this review has limitations, some of which are inherent to its design of a literature review. Although broad terms were initially used, there were limitations related to inaccuracies in the search formula employed in the bibliographic databases and to the restricted inclusion of published scientific articles of free access or available through libraries, excluding gray literature, books or term papers, which may explain the limited number of articles selected for this review.
However, the expectation is to disclose here the state of the art regarding patient participation in ensuring and improving safe care in Brazil vis-à-vis international advances. Despite the existence of academic production and even government policy focused on patient safety, organizational culture, characteristics of the patient/staff relationship and the level of health literacy of the population are still barriers, even more so in Brazil. For patients to truly play a key role in the care process and be heard in decision-making there must be scope for them to voice their complaints without embarrassment or harm of any kind, especially in a society with such inequality in terms of socio-educational conditions and health care access, use, adequacy and effectiveness.

Conclusions
Patients are able to identify incidents and adverse events in health care, and their participation and contribution in initiatives aimed at improving health care quality and safety should be encouraged and their role increasingly appreciated.
Problems related to communication and use of medication were found to be the most reported by patients in this review. These results are in accordance with previous reviews 9, 10 . Issues related to The international patient safety goals were also identified in the reviewed studies, such as safe surgery, HAI, patient identification, falls and pressure injuries. Also reported were organizational factors, such as delays, incorrect diagnosis and poor care continuity; staff-related issues, such as work overload and poor listening to patients; and problems related to environment and structure of services, showing that patients' perception of safety goes beyond that reported by staff.
This stresses once more the importance of considering the incidents, adverse events and contributing factors reported by patients and family members and combining them with those identified by staff to develop a plan to improve the quality of care. This is a step towards ensuring the key role of patients in this process at various levels.
This review stands out from previous ones for including studies in Portuguese and Spanish in the debate, expanding the range of countries and their respective cultural contexts. Moreover, it is worth noting the scarcity of research on the subject in Brazil, indicating the need for studies and initiatives to expand its insertion and engagement, plus regular data collection on patient safety and other aspects of care quality from the perspective of patients, family members and caregivers.
From an organizational point of view, despite the acknowledged relevance of the issue, current notification systems still do not seem capable of identifying all patients' concerns about the quality of the care they receive. New arrangements in which patients play an active and leading role in care should be encouraged and developed to remedy this situation. Paradoxically, in the current context of lack of supplies and precarious hospital services in Brazil, giving voice to patients is both urgent and necessary to the founding principles of the Brazilian Unified National Health System -universality, equity, integrality and popular participation.