Case Study: Collection, Aggregation, Use and Utility of Clinical Data and Patient Information in rural Peru

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1 Bustillo 1 Case Study: Collection, Aggregation, Use and Utility of Clinical Data and Patient Information in rural Peru Introduction Research into impediments, cultural disparities, and lack of resources that affect the efficient delivery of health care in third world settings is ongoing. As a part of the UCSB Translational Medical Research Laboratory (TMRL) systems approach to medical research, this case study is intended to be the basis and substantiation for further inquiry into the application of modern computational modeling in health deficit cultures. This case study reviews challenges in information management and data access in rural Peru. Peruvian Health Background With its challenging geography and socioeconomically diverse population, Peru has long struggled to provide effective health services to its poorest and most remote citizens living in rural areas. According to the World Health Organization (WHO), the two major health sector initiatives are the improvement of basic health provision to rural areas and the continued decentralization of health services. The decentralization process of the healthcare system occurred in a context of weak management capabilities. As a direct result of this, in 2012, only 39.4% of the budget allocated to healthcare was actually spent, largely due to administrative bottlenecking and miscommunication between national and regional governments (WHO.int). As a developing nation, Peru has achieved significant economic growth, growing its gross domestic product at an average of 6.4% since 2004 (WHO.int). However, economic growth has accumulated primarily in urban areas, such as in the capital city of Lima, and failed to reach the countries poorest living in rural regions. As a result of economic disparities, urban areas struggle increasingly with non-communicable diseases while rural regions continue to struggle with easily preventable communicable disease. The Peruvian national health system consists of both public and private systems with significant economic, cultural, and geographical barriers, which restrict access to their services. According the Peruvian Ministry of Health (MINSA), private practice provides services to approximately 12% of the population. Socialized medical services comprise of three major actors:

2 Bustillo 2 EsSalud- the social security system that covers workers in the formal sector and their dependents (approximately 20% of population) (MINSA.gov) The Ministry of Health is in charge of public hospitals and public health initiatives. It serves approximately 65% of the population and operates roughly 83% of healthcare facilities (MINSA.gov). The Military health system (Armed Forces Health Services and National Peruvian Police Health Service) provides health services to 3% of the population (MINSA.gov). An estimated 25% of the population does not have access to consistent and accessible health care (MINSA.gov). In addition, there have been attempts by the government to implement universal health coverage, and as of 2010, 63.5% of the population was insured (WHO.int). The Ministry of Health introduced its comprehensive health insurance program, Seguro Integral de Salud (SIS), for those living in extreme poverty and covers 36.3% of those insured, while 20.1% of those insured receives coverage via EsSalud (MINSA.gov). Peru s principal health issues affect those living in poverty, which consists of 28% of the population. Chronic malnutrition affects 18% of Peruvians, 15% lack access to clean water, and 28% to basic sanitation, numbers that skyrocket in rural locations (WHO.int). There is a significant gap in the standard of care in rural areas as compared to urban cities, which have modern hospitals and provide tertiary care. Peru has experienced a substantial growth and improvement in its telecommunications market over the past decade, but is only beginning to make progress in biomedical and health informatics. Access to information technologies varies between urban and rural areas, primarily due to the complexity of instillation in rural areas and costs. Currently, there is no national health information system, but there are several independent applications that belong to different actors of the health sector, which function locally. However, each organization uses its own standards and protocols, which comprise

3 Bustillo 3 interoperability. In 2009, 32.1% of households had a landline telephone, but only 1.6% of rural household had a landline (MINSA.gov). Overall, access to mobile phones is higher than access to landlines, which provides opportunities for mobile health applications. In terms of computer access, roughly 20% of Peruvian homes have a computer, but there is wide gap in computer ownership in urban and rural areas. For 65.9% of population, the primary access to Internet is via an Internet Cafe, at home (26.1%) and at work (8%) (WHO.int). Analysis of Peruvian Health Care Delivery in a Rural Setting: La Merced Background La Merced, a tropical jungle city located in the Chanchamayo province and Junín region, is home to various indigenous communities. Located approximately a ten hour drive inland from Lima, La Merced suffers from much higher levels of poverty and communicable disease than Lima. However, national health priorities of the government do not precisely align with the regional priorities of La Merced. Healthcare Structure in La Merced La Merced primarily serves its population via a MINSA hospital that has a classification of Level II-1 (Basic hospital without specialists). La Merced also houses various different levels of MINSA health services: Level I-1; Health post without a doctor Level I-2; Health post with a doctor Level I-3; Health center without hospitalization Level I-4; Health center with hospitalization The Junín region s capital, Huancayo, hosts a Level II-2 hospital, which has a greater capacity to treat more complicated cases with more specialists and sophisticated technology. Only Lima features hospitals of Level III-1 and Level III-2 classification, which are national hospitals and specialized teaching institutes respectively.

4 Bustillo 4 In La Merced hospital, all medical records are completed manually and stored in the hospital archive office. Thus, if a patient were to be travelling outside of La Merced and need medical attention, there is no way to access their paper medical record that is stored in La Merced. La Merced hospital and MINSA as a whole, use two different information systems to track patient admission. For external consultations, Health Information System (HIS) forms are utilized, while Emergency Systems (SEM) forms are used for emergency admission only in Level I-3 facilites or higher. Moreover, since HIS forms are used in all MINSA facilities compared to SEM, this case study will only focus on HIS system. Health Information System in Peru The goal of the Health Information System (HIS) is to provide information needed to strengthen health systems by providing relevant, timely, and accurate information on the performance of the health system itself (Vital Wave Consulting 2). HIS forms are filled out manually in accordance with the International Classification of Diseases, which is the standard diagnostic tool for epidemiology, health management, and clinical purposes (MINSA.gov). The HIS initiatives in Peru fall into two main categories: electronic medical record systems developed at the local level and disease surveillance programs (WHO.int). All of the more integrative HIS initiatives are isolated pilot projects, none of which have developed into a scalable system usable nation-wide. According to Vital Wave Consulting, HIS strengths in Peru are several small, successful disease surveillance programs (84). HIS weaknesses include: lack of a long-range national ehealth vision and strategy and a comprehensive national plan for integration or scaling successful programs (83). According to Lau, key factors that influence HIS success include: having in-house systems, developers as users, integrated decision support and benchmark practices (3). HIS in La Merced Collection The patient medical record in La Merced hospital consists of a HIS form and a clinical history depending on what type of doctor the patient visited at the hospital. La Merced hospital currently utilizes a first generation HIS that is characterized by the usage of conventional paper-based systems for

5 Bustillo 5 collecting district health indicators (Vital 44). HIS forms are used for external consultations and are used principally for disease surveillance (MINSA.gov). The HIS form is utilized in all MINSA health facilities including: health posts, health centers, and hospitals. Multiple redundant forms characterize data collection, which is external to routine operations and found to be time consuming. Aggregation All HIS forms at health facilities are recorded daily in written logbooks or registers. Once a month, all HIS forms are tallied by health workers into computers and summary reports of compiled indicators are forwarded to the next higher administrative level of the system where they are recompiled and passed on again (Vital 54). This process is repeated until a final countrywide compilation is available for use in setting policy. The data flows upward to the MINSA, but not downwards or horizontally to health care providers. In addition to long delays in reporting, the existence of separate health information systems utilized throughout Peruvian healthcare highlights issues with interoperability. There is currently no integration of separate information systems and peer data from other facilities or geographies is rarely available (Vital 24). The World Health Organization lists the major factors working against interoperability: The work cultures and politics of main health providers Systems evolved in isolation with obsolete technology The lack of standards and legislation for data coding and information exchange protocols Curioso notes that the main obstacle to information interchange in Peru is that each healthcare institution has different ways of identifying patients (2). There is a possibility of using the National Identity card; however, note all citizen have this card, particularly children in rural areas. Use and Utility Being able to count on accurate data is crucial for monitoring trends in national indicators as well as for making informed decisions at the policy level. The unilateral upward flow of data is processed at each level by the Statistics and Epidemiology office and the Statistics and Informatics Office of MINSA

6 Bustillo 6 (MINSA.gov). Also, capacity for data analysis is strictly confined to the highest levels of MINSA, where data has been reported to arrive from lower levels after a month or even two months delay (Vital 24). Thus, the availability of timely and accurate information for decision-making is severely limited. Conflicting data leads to poor policy decisions and a lack of improvement of health conditions. The deficiency of real time access to health information seriously impedes MINSA s ability to make informed decisions. The system needs to expand its function as a repository and could benefit from longitudinal data with self-reporting. Various pilot projects are discussed later. La Merced Health Care Provider Opinion of HIS Surveys and interviews were conducted in all different levels of MINSA health facilities in La Merced in order to gain an overall perspective of the health staff opinion of HIS. A summary of the most prevalent positives and negatives are listed: Positives: Provides statistics and data regarding disease Data can be entered and aggregated into any type of computer Negatives: It is possible to physically lose the HIS form HIS form does not include antecedents Not all of the staff completely fills out HIS form according to the technical standards, creating incomplete data Excess work leading to greater stress Not dynamic to changes Problems with legibility Shortcomings of HIS In a landscape analysis of HIS in developing countries, Vital Wave Consulting included shortcoming of HIS specifically in Peru:

7 Bustillo 7 Limited data because HIS only functions in the public sector and often only captures data from interactions within the public health system (32). There is significant duplication and fragmentation in data collection because implementing partners have little incentive to collaborate with others to share data (34). Data collection is a significant burden on those collecting and imputing the data. Workers spend all day imputing manually written HIS forms into computers. Human errors in inputting data into computers Future of HIS in La Merced While La Merced currently utilizes the first generation HIS, MINSA is in the works of progressing to the second generation HIS, where aggregated health data is used to not only inform policy, but to improve care at the point of service (MINSA.gov). This progression is characterized by an optimization of paper systems through simplifying indicators and reducing duplication. The principal goal of MINSA with HIS is to eventually progress to a third generation, which is identified by a migration of traditional district health information systems to electronic storage and reporting. Electronic Medical Records in Peru In May of 2013, the Congress of the Peruvian Republic created a new law, N 30024, for the creation of a national registry of electronic medical records (Téllez 1). The objective of the law is to begin the process of organizing and standardizing health data and information in order to link all of the different Peruvian health establishments and facilities. It is estimated that by the year 2016, all Peruvian health facilities will be using interconnected electronic medical records. MINSA will be responsible for the administration of this new national health registry, which will utilize a national interoperative platform (Téllez 3). Challenges of Establishing Nationwide EMR within Peru Establishing an EMR within the fragmented Peruvian health services that all use heterogeneous data systems poses various challenges. According to the MINSA Office of Statistics and Informatics, the

8 Bustillo 8 principal challenge is joining, standardizing, and connecting the different data systems (Chipana 1). The ultimate goal is to create a platform where all hospital doctors, health posts, and clinics can communicate and converse in the same language. To do so, MINSA is working with suppliers and global consultants that have installed nationwide EMRs in Spain, Italy and China (Chipana 2). A Model: Comparison to Partners in Health (PIH) EMR Established in Peru The non-profit organization PIH and its sister organization in Peru, Socios en Salud, created an innovative Web-based EMR in 2001 to support treatment programs for drug-resistant tuberculosis patients in the slums of Lima, Peru. It is an open source web system backed by an Oracle database and is implemented in Spanish and English (Fraser 84). Physician, nurses, and nursing assistants perform data entry. The system collects data on patient clinical condition, drug regimens and laboratory results, and includes a set of tools to assist in the detection and correction of data entry errors (Fraser 264). The EMR is also used to create monthly reports for MINSA and the Global Fund. The system provides a full inventory system for pharmacy management and drug regimen analysis. The implementation of the entry system was associated with a reduction in data errors, quicker data entry, and a decrease in workload compared to the previous paper and spread sheet approach (Fraser 268). The significance of this model is that it demonstrates the strength and flexibility of a web-based approach when Internet connectivity is available. Public Health Informatics in Peru One of the most important problems faced by health care workers in rural areas in developing countries is the lack of information and communication networks. With the current HIS disease monitoring system, it can take up to one month for news of a disease outbreak from a remote area to reach the central level (MINSA.gov). Neither mobile phones nor handhelds are consistently used for disease monitoring by MINSA since their use has been restricted to pilot projects. The expansion of mobile phones in developing countries involves new opportunities to improve efficiency, productivity and communication in the health sector. Mobile Health care delivery: mhealth

9 Bustillo 9 The diversity of the Peruvian topography: coastal zone, mountainous regions, and jungle regions have important repercussions for wireless penetration (Coyle 4). In Peru, the number of mobile phones overtook the number of fixed phone lines back in 2001 and the rate of growth is still increasing (Curioso 246). According to Coyle, mobile technology has overcome many of the barriers of rural developing countries and revolutionized communications due to: low infrastructure investment, ease of use, low energy consumption, and its ability to surpass unfavorable geographic structures (4). Mobile technology has many opportunities for health including: health data management, information access for health workers, telemedicine and health promotion, and communication in emergencies. Two pilot projects of how cell phones and handheld devices are being integrated with webtechnology in Peru to improve healthcare delivery are listed: Cell-PREVEN: Remote data collection. A real-time surveillance system using cell phones and the Internet to monitor adverse reactions to metronidazole administration among female sex workers in Peru. Information is stored in an online database, where it can be accessed worldwide and exported over a secure Internet connection. and text messages sent to mobile devices alert key personnel to selected symptoms. The project shows that it is unnecessary to have the latest Palm Pilot or Tablet PC to create a sophisticated public health surveillance system (Curioso 247). Alerta DISAMAR: Disease and epidemic outbreak tracking. A disease surveillance system, based on Voxiva technology, deployed by the Peruvian Navy with support from the US Navy. The system uses multiple communication channels (radio, cell phone, land line, and a web interface) to convey near real-time disease outbreak data from Navy bases and medical units to a central unit. Disease outbreak report now takes only two to three minutes. Reports and analysis can be performed immediately against this data. The reports and analysis have enabled the Peruvian Navy to recommend improvements to vector control and food procurement (Curioso 248). Impediments to Health Care Delivery In La Merced Health care delivery in the developing world is filled with challenges. Often taken for granted, fundamental characteristics of healthcare in the developed world: reliable Internet, working electricity,

10 Bustillo 10 supplies of pharmaceuticals, and basic sanitation, are often lacking in resource-poor settings. Surveys were conducted in MINSA health facilities to determine the greatest challenges to health care delivery in rural Peru: Poor teamwork and cohesion amongst hospital staff Lack of medical specialists Lack of advanced medical technology and workers that are trained to use that technology (ex: MRI) Lack of research Low supply of physicians Limited by written patient records Cultural Disparities Peru consists of a multicultural and multiethnic population, including Amerindians (45%), mestizo-mixed Amerindian and white (37%), white (15%), black, Japanese, Chinese, and other (3%) (WHO.int). Noting the great ethnic diversity within Peru, Planas conducted an experimental study in 2014, to determine whether health providers in Peru provide differential quality of care based on the patient s ethnic profile. Intrestingly, Planas found a non-significant mean difference between ethnic profiles in provider behavior (7). In addition, traditional medicine within indigenous communities, including self-treatment, natural medicines, and shamans, continue to remain strong in rural Peru. The World Health Organization and World Bank explain this relationship: When formal health care services are unavailable, people turn to traditional medicine. In most cases, they say that they would rather be treated by modern health care providers, but often traditional services are all they can access or afford (WHO.int). In the Journal of Ethnobiology and Ethnomedicine, Mathez-Stiefel reports that the main obstacle to the use of biomedicine in resource-poor rural areas might not be infrastructural or economic alone (8).

11 Bustillo 11 Instead, it may lie in lack of sufficient recognition by biomedical practitioners of the value and importance of indigenous medical systems (10). This finding suggests that implementation of health systems in rural indigenous communities should be designed as a process of joint development of indigenous and biomedical health traditions. Other Impediments According to Jonathan Williamson from the University of Bristol Medical School, the effectiveness of existing healthcare services in rural Peru is restricted because of geographical isolation, limited road access, and underequipped local healthcare services (23). Moreover, governmental healthcare initiatives may be biased toward more easily accessible urbanized regions. At a 2008 Harvard Business School s Global Business Summit: Redefining Global Health Care, co-founder of PIH Jim Yong Kim offered pointed out challenges associated with delivering health care globally: Isolated delivery. Districts within countries often deliver health care in isolation (2). Execution is project based but not systemic. Many experimental pilots take place but they rarely scale. In fact, many in the global health care world do not know how to scale these projects (4). Competition among implementers. The implementation of global health care is extremely fragmented, with thousands of NGOs involved. The competition among implementers and lack of coordination is a major barrier (1). Absence of measurement. Results are often not measured. When they are, the measures tend to be process measures (the number of people vaccinated) as opposed to outcome measures (the number of lives saved) (2). Conclusion Alongside the worldwide scope and vision of the UCSB TMRL to improve the delivery of healthcare, this case study serves as a basis for future work to improve healthcare delivery in rural resource poor-settings. It is important to note that economic progress alone will not cure all that ails citizens in the La Merced region of Peru. The La Merced people are reliant on the alignment of the

12 Bustillo 12 national government s priorities with their own. This would specifically come in the form of subsidies for doctors practicing in rural locations and a larger portion of government spending being allocated to the healthcare arena. More importantly, health informatics can play a key role in helping overcome these problems. To succeed, a national strategy, a well-trained workforce and leadership are needed. The progression of HIS and the development of the national EMR system should be the priorities in order to ensure success within Peruvian healthcare. The rapid growth of mobile phones has the potential to improve health care access of the countries most isolated and rural populations. Finally, despite technology s great promise for improving health in developing countries, this should in no way diminish the importance of proven health strategies. Health education, improvements in sanitation, and local capacity is a proven health design. These tools are available now, whereas promising biotechnologies are at varying stages of development. An appropriate balance should be established between investment in new technologies and in conventional strategies to improve health care delivery in resource-poor settings. Works Cited Chipana, Carlos. "En El 2016 Funcionará Nuevo Sistema De Historias Clínicas En Todo El Perú." La Republica.pe. N.p., 4 May Web. 20 Feb < historias-clinicas-en-todo-el-peru>.

13 Bustillo 13 Coyle D. (2005), The role of mobile phones in disasters and emergencies, London, GSM. Association (GSMA), Web. 20 Feb < Curioso, Walter, et al. "Biomedical and health informatics in Peru: significance for public health." Health information and libraries journal 26.3 (2009): Iguiñiz-Romero, Ruth, and Nancy Palomino. "Data Do Count! Collection And Use Of Maternal Mortality Data In Peru, , And Improvements Since 2005." Reproductive Health Matters (2012): Academic Search Complete. Web. 1 Apr Fraser, Hamish S F, et al. "Implementing electronic medical record systems in developing countries." Informatics in primary care 13.2 (2005): Fraser, Hamish S F, et al. "Evaluating the impact and costs of deploying an electronic medical record system to support TB treatment in Peru." AMIA... Annual Symposium proceedings (2006): Lau, Francis, et al. "A review on systematic reviews of health information system studies." Journal of the American Medical Informatics Association 17.6 (2010): Ministerio De Salud Del Perú. MINSA, n.d. Web. 28 Mar <http%3a%2f%2fwww.minsa.gob.pe>. "Peru." WHO. World Health Organization, n.d. Web. 1 Apr < Planas, Maria-Elena, et al. "Effects of ethnic attributes on the quality of family planning services in Lima, Peru: a randomized crossover trial." PLoS ONE 10.2 (2015):e Téllez, Cynthia. "Nota De Prensa Publican Ley De Historias Clínicas Electrónicas." Nota De Prensa. N.p., 1 June Web. < "Vital Wave: Health Information Systems in Developing Countries." Vital Wave: Business Expansion in Emerging Markets :: Articles and Presentations. Vital Wave Consulting, May Web. 11 Mar <