ISSUES

INTRODUCTION

Following the upward trend of aging and the increase of chronic diseases, the need for rehabilitation services recently has increased throughout the countries of the world, especially in low- and middle-income countries [1, 2]. Statistics in studies show that 2.41 billion people in the world need rehabilitation services. This means that one out of every three people in the world needs rehabilitation services during the period of illness or injury, and this statistic rejects the theory of the need for rehabilitation services for a few people [1]. Also, with the emergence of the Covid-19 pandemic, the need for rehabilitation services in patients after the acute stage of the disease has also increased globally [1, 3]. Rehabilitation is a series of interventions designed to enable a person with a disorder, optimize performance, reduce disability and reach a suitable mental, physical, social and functional level [4].

Considering the long-term complications and high costs of treatment, the need to follow up and continue the patient's care flow, the evidence review shows the need for extensive planning to find the best care programs and disease control; this importance can only be fulfilled with the help of registration systems [5, 6]. The registration system is an organized system for collecting, storing, retrieving, and analyzing for accurate description of the health care process, assessment, diagnosis, and documentation. It helps administrators and policy makers to determine the status, identify priorities, and manage data resources. In addition, the creation and development of registration systems helps to accurately identify the prevalence, incidence, disease burden, as well as understanding specific health conditions and evaluating the effectiveness of interventions [6].

Review studies help to summarize and analyze the results of existing studies and are a useful tool for clinical decisions and planning. Especially in newer research where the quality and scope of studies are very variable. It also helps to identify the evidence in which there is currently no research [7]. Although the registration systems in different fields of rehabilitation are progressing separately [8-10].

But the lack of a review study on rehabilitation registration systems as a comprehensive and comprehensive approach prevents developers and health policy makers from creating a general view of these systems. In 2016, Ajami et al conducted a narrative review with the aim of explaining the role of information systems in the management of cerebral palsy rehabilitation and identifying the advantages and obstacles of developing a cerebral palsy registry system; but this study was only one of the advantages and challenges related to cerebral palsy information recording systems [5]. Therefore, the purpose of this review study is to examine the challenges and benefits of developing a rehabilitation registration system.

MATERIAL AND METHODS

The list of keywords was selected from MeSH medical subject headings and was used to verify the quality of search keywords using Boolean operators (And/Or) to create search strings. The list of searched keywords is in the following two categories:

1. Registry, registration, "Hospital information system", "Minimum data set", "Information system", "Rehabilitation information system", "Electronic health record"

2. Rehabilitation

To search for studies published in English and open access by searching for a combination of keywords in the keyword, title and abstract of reliable scientific databases Web of Science, Scopus, PubMed, Science Direct, as well as searching the title of studies in the Cochrane database without time limit in 31 Explored March 2021. The studies that stated the challenges and recommendations for expanding the rehabilitation information registration system were included in this review.

Studies in English focusing on the two main words of the registration and rehabilitation system, including articles published in reputable scientific journals, without time limit, access to the full text of articles and studies that have a possible answer to the researched question based on the title and content, as entry criteria were considered. We did not put any filter in the type of input studies in order not to lose any evidence of different studies. On the other hand, abstracts without full text, failure to answer the research questions based on the content of the studies, repeated studies and studies that do not have any scientific evidence, theoretical, those who do not provide laboratory or statistical data were considered as exclusion criteria.

Our study was based on a systematic review to examine the evidence to answer the research question.

1. Is there an integrated registry system with health systems?

2. What are the challenges and recommendations for the development of rehabilitation registration system integrated with health systems?

3. What is the most important challenge of rehabilitation registration systems?

RESULTS

According to Fig 1, a total of 1924 related original articles were first retrieved through databases. After removing duplicate articles (527), 1397 studies were left to review the abstract titles of the articles. Then, 100 studies remained for full text review, which were independently screened based on eligibility criteria; finally, after reviewing the full text of the articles, 32 original articles were included in this review (Fig 1).

Rehabilitation registry systems by collecting high-quality prospective data can provide insight into the state of prevalence, incidence, disease trends, and priorities of stakeholders and health policy makers [1]. However, there are challenges and recommendations to improve the rapid development of rehabilitation systems. In this study, we present a list of the main challenges and recommendations for the development of rehabilitation registration systems (Table 1).

[Figure ID: F1] Fig 1. Diagram of the study search and selection process

Integration of rehabilitation registration systems with health systems

The provision of health care and rehabilitation worldwide is focused on individual diseases, currently [2, 3]. This is despite the fact that rehabilitation services are often multifactorial [4]. Because of that, a person needs a wider range of specializations. This issue challenges the management of patient care, especially in cases where the disease is chronic, complex, or severe. And single-disciplinary care does not meet the needs of patients. Therefore, it seems that a multidisciplinary approach can be appropriate to optimize rehabilitation services [5-8]. This can improve patients' quality of life and reduce disability [9, 10]. Therefore, it is recommended to create a communication bridge for the coordination and participation of health care professionals. One of the best communication tools and targeted patient data collection is data registration systems [1].

In different fields of rehabilitation, several sources were used to record data; however, hospitals act as the most important information sources and the most accessible data generators [11-14]. Currently, in all the studied studies, rehabilitation registration systems are not included in the electronic health record. And this caused the production and collection of data in parallel. Improper dispersion, duplicative data recording, and lack of a unified registration system for standard data collection, in addition to imposing higher costs, have adverse effects on data exchange, comparison, and management [14-16].

However, by linking the database of the registration system to other external databases, it can answer important questions in the field of medicine, and this shows the high potential of the integrated database [13, 15, 17, 18]. But linking data to create a unified database is very difficult and practically cannot be done on a large scale or continuously. But it is also possible to combine small registry databases by manual review [13].

Therefore, it seems that the connection between the data registration systems with the help of a comprehensive guideline or model or the creation of a national integrated central database in the form of integration with other health systems and based on electronic health records is very efficient [14, 17, 19]. Since the cost of research in the development of a medical intervention is estimated at 802 million dollars. One of the major benefits of creating and developing integrated systems is reducing costs and accelerating the medical research process [20]. In addition to this, the integration of rehabilitation registration systems with other health systems improves treatment follow-up, comprehensive review of treatment interactions, ensuring the quality of health care, as well as coordinating and facilitating communication between individual treatment measures in clinics, rehabilitation organizations, hospitals and other health systems. The development of an integrated rehabilitation data registration system is a basic tool for health and treatment policy makers to make appropriate and timely decisions, identify priorities, evaluate effectiveness and manage costs [1, 14, 16].

Input data quality

In addition to all the mentioned benefits, clinical registration systems are an important tool for monitoring the quality of health care services and, as a result, improve clinical results; that this importance cannot be achieved unless data quality is guaranteed; Therefore, the need for a continuous and interactive quality assurance process is very important [14, 21].

Using criteria such as accuracy in recording correct data, completeness and consistency of data can help the quality of data [14]. In many studies, the International Classification of Functioning, Disability and Health (ICF) developed by the World Health Organization is considered the most appropriate coding system in rehabilitation [21, 22].

But it was also said in some studies that ICF does not include many collaborative measures. So, they recommended the need for consensus on preferred tools [23]. In addition, among the barriers to the quality of registration data including unforeseen practice changes, ambiguity in the variables in the registration systems, poor performance in data linking and patient follow-up, lack of support and clarification of the purpose of the registration system, and lack of knowledge of the users of the registration system can be mentioned [14, 24].

The most important facilitator is the development of a comprehensive international framework that includes all the factors required for data collection. Other facilitators include continuous adjustment of performance and content of registration systems according to established guidelines [21], user-friendly design of the system, and continuous training of users [14, 24].

Investment

One of the basic challenges in the development of rehabilitation services is the issue of budget and investment; because in many parts of the world, special funds are not allocated for the development of rehabilitation interventions, programs and facilities; and its resources are provided from other areas of health [5]. Although creating, developing and maintaining a reliable registration system is very expensive [13].

But due to the nature of chronic diseases and often rehabilitation services that are multifactorial, and require simultaneous information from several providers. The need for integrated information access is felt. This requires an urgent need for sufficient investment in related facilities and programs [5, 16]. On the other hand, by creating an integrated registration system, many of the costs of collecting duplicate data, reducing the labor involved, reducing the cost of medical research, and most importantly improving the clinical results of the society can be a good justification for investing in it and promising to support it [20, 25]. But also, in order to invest and plan before acting, the need to study the level of effectiveness, the calculation of financial indicators is an inevitable necessity [16].

Privacy

One of the barriers to people's participation in registration systems includes privacy concerns [18, 26]. People are worried about sharing some of their information. Therefore, it causes non-cooperation in data collection. In general, people do not have a problem with sharing their medical and health information, and they are happy when they understand that this information contributes to the advancement of medical knowledge. But they felt worried about issues such as their personal information [18, 26]. Therefore, it is necessary to have a clear security protocol about access and information sharing [26].

Goal setting

In designing a registration system, it is very important to define the purpose of its creation before development. If enough thinking is done about collecting the required data, the usefulness of the data will increase [18]. The cost of setting up registration systems is very expensive [13]. Therefore, its value and purpose should be carefully examined. Also, if the purpose of data collection is clearly defined for people, their motivation to participate will increase [26].

Other challenges and recommendations

Other challenges include lack of access to hardware infrastructure [27-29], lack of binding laws and regulations related to registration systems [16], lack of access to sufficient information to implement information registration systems [28], lack of continuous monitoring and lack of holding courses. It is educational [27, 29]; The recommendations to solve it include continuous evaluation and monitoring, which itself improves the quality of services and as a result improves the attitude of managers and as a result sufficient investment in the development of the necessary facilities and infrastructure [14]. Determining the standard framework and explaining detailed data elements [27] and holding training courses to increase computer knowledge for employees [28, 29].

DISCUSSION

The purpose of this comprehensive literature review was to examine the challenges and benefits of developing a rehabilitation registration system. A total of 32 eligible studies were included in this review. The most important challenge investigated in rehabilitation registration systems is the large variety in unilateral registration systems [16], which due to the multifactorial nature of rehabilitation services and chronic diseases does not meet the needs of patients [5-8].

Therefore, creating a national registration system integrated with other health systems based on electronic health records as a basic tool in improving the follow-up of multifaceted patient treatment, facilitating communication between health care providers, and as a result, reducing disability and increasing the quality of life of patients. Other challenges include the lack of a comprehensive international framework to guarantee the quality of collected data [16], lack of specific budget allocation for the development of rehabilitation services and facilities [5], privacy and data security data [18, 26], lack of explanation and clarification of the development goal of the rehabilitation registration system [18].

Recommendations in order to solve the mentioned challenges include the development of a comprehensive and integrated rehabilitation registration system with other health systems [14, 17, 19], the development of an international comprehensive framework to ensure the quality of the collected data [21], conducting studies in the field of effectiveness and justifying cost-effectiveness of the rehabilitation registration systems [16], explaining the clear security protocol about information access and sharing and determining the purpose of data collection [18].

No evidence of the establishment of a comprehensive and integrated rehabilitation registration system was found with other health systems. Although in some studies sharing information or merging data from different registration systems in order to find answers to the research question, this practice is considered possible [13, 15, 17, 18]. But also due to the loss of many data, time, cost and failure to do work on a larger scale, many studies recommended the creation of an integrated registration system at the beginning or the creation of a comprehensive international registration standards framework [13, 16].

Furthermore, no systematic review studies were found on the development of comprehensive rehabilitation registration systems; However, in line with the results of the study, Ajami et al. [5] conducted a narrative review in 2016 with the aim of explaining the role of information systems in the management of cerebral palsy rehabilitation and identifying the advantages and obstacles of developing a cerebral palsy registry system.

The results of this study showed that the cerebral palsy information system has many advantages, one of its biggest challenges, including for children with physical and motor disabilities in the rehabilitation center, is the lack of access to an integrated system that reflects all the information and health records related to patient care. To solve this problem, create a standard framework of minimum data sets that recommended a common language in data exchange.

Also, Afzali et al. conducted a study aimed at reviewing the information architecture of cerebral palsy information systems in 2019.The results of this study showed that for the development and implementation of a strong information registration system, it is necessary to use the principles of information architecture when developing the system, which can greatly improve the sharing and quality of recorded data [22].

In another study, Wu et al. conducted in 2016 in NSW and in collaboration with the Australian Rehabilitation Outcomes Center aimed at linking trauma and rehabilitation registry datasets; The results of the study showed that it is possible to combine the registry of road trauma and rehabilitation; And the correlation rate of 72% can be considered acceptable; But this requires careful manual inspection, which is only possible on a small scale and practically cannot be done on a large scale or continuously; Perhaps if an integrated system of rehabilitation with other health systems is created from the beginning, this will help to solve these challenges [21].

In addition, Kuptniratsaikul et al., who in 2013 in Pennsylvania aimed to prospectively match known data to merge two trauma registry datasets and a central brain injury system, which could provide multiple opportunities for collaborative projects with interested researchers [35]. However, systems can be combined to find answers to research questions. But maybe if from the beginning, a combination database of other rehabilitation disciplines is created in an integrated manner with the patient's history, many rework, lack of data quality, data loss due to different registrations will be avoided.

In summary, the results of our systematic review showed that at the global level, the rehabilitation information registration system has not been implemented and implemented in an integrated manner with the hospital information system. The most important recommendation in this regard was WHO's call for action for 2030 to create a rehabilitation information registration system integrated with the hospital information system. Other challenges include the lack of an integrated classification information system for rehabilitation services and the lack of coordination in input data, lack of allocation of specific funds and capital to rehabilitation services, concern about information sharing, lack of clear goals, lack of access to hardware infrastructure, lack of clear rules and regulations, lack of continuous supervision and lack of holding training courses. The recommendations in this regard were to create a framework and specific rules for budget allocation, specific confidentiality rules, defining goals, planning for continuous monitoring and holding training courses for the integrated registration of rehabilitation information. Although previous studies indicate recent progress in the field of telerehabilitation [36-40]; however, a reliable infrastructure, including the rehabilitation registry system, which is the basis of such systems, has not yet been implemented. Therefore, the future work of this study is the design and implementation of the minimum data set and, in the next step is to implement the rehabilitation registration system in Iran.Strengths and limitations

This study is the first survey to identify the challenges and recommendations for expanding the registration of rehabilitation information. The results of these provide valuable insights for policy makers in this area. However, this study had potential limitations.

One of the limitations of this study was the lack of coverage of the capacity of the health and rehabilitation system and the effectiveness of the registration systems. Investment for development and macro-planning is an inevitable necessity [16]. Therefore, it is suggested that studies be conducted in the field of determining the capacity of health systems for investment and costs required for the development of a comprehensive rehabilitation registration system. In addition, the search keywords may not be sufficient and complete to get more studies, and some outstanding and related studies are not included in this review.

CONCLUSION

In this article, the challenges and recommendations of the rehabilitation registration system were discussed, which serves as a beacon for designers in the direction of developing and implementing rehabilitation registration systems. The results of the study showed that the most important challenge in rehabilitation registration systems is the large variety in unilateral registration systems, which due to the multifactorial nature of rehabilitation services and chronic diseases does not meet the needs of patients.

Therefore, it seems that the connection between the data registration systems with the help of a comprehensive guideline or model or the creation of a national integrated central database in the form of integration with other health systems and based on electronic health records is very efficient. The development of a comprehensive rehabilitation registration system is part of the future work of this study.

AUTHOR’S CONTRIBUTION

All authors contributed to the literature review, design, data collection and analysis, drafting the manuscript, read and approved the final manuscript.

CONFLICTS OF INTEREST

The authors declare no conflicts of interest regarding the publication of this study.

FINANCIAL DISCLOSURE

This study was carried out with the financial support of Mashhad University of Medical Sciences (grant number: 4001246).