Journal of Cancer Policy 7 (2016) 1–3
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Journal of Cancer Policy journal homepage: www.elsevier.com/locate/jcpo
Short communication
Barriers to expansion of cancer research: Data collection challenges at a single-institution in Rwanda Allison Silverstein a,b,c,d,∗ , Pacifique Mugenzi a,e , Joseph Lule a , Ainhoa Costas-Chavarri a,b,c a
Rwanda Military Hospital, Kigali, Rwanda Children’s Hospital Boston, Department Of Plastic Surgery, Boston, MA, USA c Harvard Medical School, Program In Global Surgery And Social Change, Boston, MA, USA d University of Miami Miller School of Medicine, Miami, FL, USA e King Faisal Hospital, Kigali, Rwanda b
a r t i c l e
i n f o
Article history: Received 21 September 2015 Accepted 30 December 2015 Available online 4 January 2016
a b s t r a c t Introduction: While cancer is a leading cause of morbidity and mortality globally with an increasing burden on low- and middle-income countries (LMICs), these countries lack the appropriate funding and resources to care for cancer patients and conduct relevant research. The purpose of this study is to describe the challenges faced by a Rwandan research team looking to describe gastric cancer, the third most common cancer in terms of incidence and mortality in LMICs. We aim to use these lessons to not only highlight the need for growth in data management but also to provide suggestions on ways to achieve such improvement. Methods: A retrospective review at a single institution in Rwanda. Patient information was found and collected from eight different hospital sources for all patients diagnosed with gastric cancer or presenting with symptoms suggestive of possible gastric cancer etiology since October 2012. Results: The team identified 125 patients who were separated into 27 unique groups based on the sources in which they were found. The greatest number of sources in which any patient was found was five (n = 1). 76.0% of patients were located in the EMR (n = 95). Discussion: Challenges to obtain comprehensive patient information are prohibitive for the cancer research development needed in LMICs. In order to meet this need, documentation should be more standardized and reflect coordinated care. Through widespread implementation of institutional EMR systems, future scale up to national cancer registries that inform and reflect national cancer care plans is possible. © 2015 Elsevier Ltd. All rights reserved.
1. Introduction Cancer is a leading cause of morbidity and mortality globally with an increasing burden on low- and middle-income countries (LMICs) [1]. Population growth and aging alone are expected to lead to a 70% increase in new cancer cases and deaths per year until 2030 with 65% of the annual weight in low resource settings [2,3]. Unfortunately, many cancers common in Africa are difficult to care for, as interventions for early detection and treatment remain
∗ Corresponding author at: Harvard Medical School, Program In Global Surgery And Social Change, Boston, MA, USA. E-mail addresses:
[email protected] (A. Silverstein), mpacifi
[email protected] (P. Mugenzi),
[email protected] (J. Lule),
[email protected] (A. Costas-Chavarri). http://dx.doi.org/10.1016/j.jcpo.2015.12.004 2213-5383/© 2015 Elsevier Ltd. All rights reserved.
largely inaccessible [4]. With startling projections estimating one million Africans a year dying from cancer by 2030, the need for prioritization of national cancer control plans and investments in cancer research is imperative [3]. While LMICs are burdened with 80% of the disability-adjusted life-years lost worldwide to cancer, they receive only 5% of global resources for cancer [4]. Key risk factors for cancer in LMICs differ from many in high-income countries [3]. Consequently, targeted investigation into modifiable risk factors, timely diagnosis, effective interventions and integrated care for cancer patients in Africa necessitates increased financial support. In addition to monetary aid, establishment of national cancer care programs is essential. [5]. Large-scale cancer registries are vital for research to monitor incidence, prevalence and mortality rates.
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They also provide information in regards to cancer prevention and control strategies, resource allocation, and public policy [6]. Although national cancer registries are the highest standard, implementation first requires development and coordination of data documentation and research on a smaller scale. Various initiatives exist to strengthen research capacity in LMICs, largely in the form of grants and partnerships [7]. However, barriers exist even once research begins. Research teams must consult multiple resources each with fragmented information. Not only is this process time-consuming, but also it may fail to reflect the population at large. We describe the challenges faced by a Rwandan research team to perform a single hospital-based descriptive study of gastric cancer. Estimates reveal increased incidence of gastric cancer in the East African region relative to other areas in Africa [8]. The team sought to describe patterns among patients presenting with gastric cancer to provide guidelines and plans for improvement of the identification and treatment of these patients. The barriers encountered provide key lessons to help build research capacity to satisfy the aggressive need for advancement in cancer care.
2. Methods A research team comprised of two surgeons, one oncologist, and one research associate strived to describe gastric cancer via a retrospective review at a single institution in Rwanda. Patient information was collected for all patients diagnosed with gastric cancer or presenting with symptoms suggestive of possible gastric cancer etiology since October 2012. Patient demographic and disease characteristics were found and collected from the following sources: (1) oncology clinic logbooks, (2) general surgery clinic logbooks, (3) operating theater recovery room logbooks, (4) ward logbooks, (5) archives of paper charts from ward admissions, (6) an individual surgeon’s database of gastric cancer cases and (7) operations performed, and (8) hospital electronic medical records (EMR). The surgeon’s database of operations performed were available beginning August 2014. Ward books and the surgeon’s database of gastric cancer cases were available from January 2015. All other sources were available from October 2012. These sources represent all documented information from places a cancer patient may present or enter the medical system during any given visit.
3. Results The team identified 125 patients diagnosed with gastric cancer or presenting with symptoms suggestive of possible gastric cancer etiology from all of the sources starting from October 2012. Patients were separated into 27 unique groups based on the sources in which they were found. This number incorporates all sources except for the EMR. 64.8% of patients were found in only one of the seven sources (n = 81) and 92.8% of patients were found in fewer than half of the seven sources (n = 116). 0.8% of patients were found in five of the seven sources (n = 1); this was the greatest number of sources in which any given patient was found. The exact distribution is shown in Table 1 76.0% of patients were located in the EMR (n = 95). There was variability in the quality of data provided within each source. Patient details were documented in English, French and Kinyarwanda. Inconsistences existed in the information on the forms in the patient paper charts, some lacking pertinent history and the unique patient identifier. Patient’s ages and spelling of names differed between sources.
Table 1 Distribution in the number of sources in which patients were identified (n = 125). Number of sources in which patient was found
Frequency
1/7 2/7 3/7 4/7 5/7 6/7 7/7
81 (64.0%) 26 (20.8%) 9 (7.2%) 2 (1.6%) 1 (0.8%) 0 (0.0%) 0 (0.0%)
4. Discussion Difficulties or inabilities to obtain complete patient information are prohibitive for the cancer research development required to meet the rising incidences of cancer cases and deaths in LMICs. Not only were 27 unique patient permutations an unexpected finding, but also each of the seven sources contained different data leading to variability in information collected. This challenge will affect the quality of research and ability to produce optimally valuable results. Even though the generalizability of the Rwandan team’s specific barriers is limited because the study was conducted at a single institution, they are ultimately not unique to the hospital or country. A unified effort to improve data documentation and quality among LMICs is vital to advance general research, and more specifically, cancer care. In order to do so, we provide the following recommendations. 4.1. Consistency and standardization of documentation Patient information must be consistent across sources of data entry. Uncertainties surrounding a patient’s age decrease data value because age is an important contributor to outcomes, commonly affecting both morbidity and mortality. Moreover, the age at which a patient presents with a disease may differ across populations. If the true age of a patient is unknown, its potential use to guide screening and treatment decisions is impaired. Also, name misspellings make linking records difficult. Written documentation should require patient presentation of a national ID so names are written from official forms to decrease errors. Furthermore, utilization of one language for all patient documentation will avoid discrepancies resulting from translations. Not only must documentation improve at the single institution, but also at the national level. Standardized documentation forms would permit uniform data collection across multiple institutions. In low resource settings, where primary care physicians treat many cancer patients, standardized documentation could facilitate more consistent care. If each hospital collects comparable information, multilevel and cross-national analysis of care will become feasible. 4.2. Documentation reflecting coordinated care In order for LMICs to satisfy the unmet challenges of cancer care, they must develop complete and easily navigated databases of patient information. Just as cancer care requires a multidisciplinary approach for disease management [9], documentation of patient information for research requires the same level of integration to permit evidence-based changes. With several entry points into the medical system, it becomes easy for patients to get lost and not receive complete care. Coordinated care enables cancer patients to receive various treatments over time and between settings [10]. Documentation of this intertwined process allows one to monitor progress of cancer prevention and policies. Data management programs can aid these efforts. They help determine key areas for improvement and assess effects of certain interventions on the treatment and quality of care. Trained data
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managers can assist in data quality improvement and help solve some of the inadequacies in the medical record system [11]. 4.3. Electronic medical records In our study 76% of patients were found in the EMRs. Widespread implementation of EMRs should be supported in order to collect information across disciplines and enable research teams to locate comprehensive patient information. In addition, use of unique patient identifiers on paper records will help link information to the EMR; this merges the paper trail with computer documentation so the EMR may serve as a central repository of information. 4.4. National cancer registries National cancer registries provide an opportunity for countries to establish a source of collective information contributed to by multiple institutions. While many regions in Africa have started to implement national cancer registries, they only cover about 1% of the African population and admit to shortcomings in data quality and completeness [5,12,13]. The African Cancer Registry Network, launched in 2012 to provide a central role for cancer surveillance and offer support to participating countries, aims to improve this situation [14]. However, registries can only beneficially exist if they have clean and comprehensive data to fill them. 4.5. National cancer control plans Ministries of Health must follow World Health Organization recommendations and establish national cancer control plans [15]. Cancer in Africa varies in incidence, results from different risk factors, and exhibits distinct qualities from other areas in the world and among separate regions of the continent. Research must reflect this uniqueness and plans created based on findings. 5. Conclusion The barriers identified by the Rwandan research team highlight the challenges and vast opportunity for growth LMICs now face. In order for integrated and standardized documentation,
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cancer registries, and national cancer control plans to even exist, cancer must be universally recognized as a growing threat to human health in low resource settings. Hospitals must ultimately focus on coordinating documentation efforts to improve data quality and completeness for future research and advancement. References [1] P. Vineis, C.P. Wild, Global cancer patterns: causes and prevention, Lancet 383 (2014) 549–557. [2] J. Ferlay, H.-R. Shin, F. Bray, D. Forman, C. Mathers, D.M. Parkin, Estimates of worldwide burden of cancer in 2008: GLOBOCAN 2008, Int J Cancer 127 (2010) 2893–2917. [3] B.S. Sylla, C.P. Wild, A million Africans a year dying from cancer by 2030: what can cancer research and control offer to the continent? Int. J. Cancer 130 (2) (2012) 245–250. [4] P. Farmer, J. Frenk, F.M. Knaul, L.N. Shulman, G. Alleyne, L. Armstrong, et al., Expansion of cancer care and control in countries of low and middle income: a call to action, Lancet 376 (2010) 1186–1193. [5] E. Singh, P. Ruff, C. Babb, M. Sengayi, M. Beery, L. Khoali, et al., Establishment of a cancer surveillance programme: the South African experience, Lancet Oncol. 16 (2015) 414–421. [6] A. Micheli, N. Sanz, F. Mwangi-Powell, M.P. Coleman, C. Neal, A. Ullrich, et al., International collaborations in cancer control and the Third International Cancer Control Congress, Tumori 95 (2009) 579–596. [7] I.O. Morhason-Bello, F. Odedina, T.R. Rebbeck, J. Harford, J.M. Dangou, L. Denny, et al., Challenges and opportunities in cancer control in Africa: a perspective from the African Organization for Research and Training in Cancer, Lancet Oncol. 14 (2013) 142–151. [8] A.W. Asombang, R. Rahman, J.A. Ibdah, Gastric cancer in Africa: current management and outcomes, World J. Gastroenterol. 20 (14) (2014) 3875–3879. [9] R. Beaglehole, J. Epping-Jordan, V. Patel, M. Chopra, S. Ebrahim, M. Kidd, et al., Improving the prevention and management of chronic disease in low-income and middle-income countries: a priority for primary health care, Lancet 372 (2008) 940–949. [10] Linking cancer care: A guide for implementing coordinated cancer care. A Victorian Government Initiative (2007). [11] L. Ayoub, L. Fu, A. Pena, J.M. Sierra, P.C. Dominquez, C.-H. Pui, et al., Implementation of a data management program in a pediatric cancer unit in a low income country, Pediatr. Blood Cancer 49 (2007) 23–27. [12] E.E. Jedy-Agba, E.A. Oga, M. Odutola, Y.M. Abdullahi, A. Popoola, P. Achara, et al., Developing national cancer registration in developing countriescase study of the Nigerian national system of cancer registries, Front. Public Health 3 (186) (2015). [13] R. Gakunga, D.M. Parksin, Cancer registries in Africa 2014: a survey of operational features and uses in cancer control planning, Int. J. Cancer 137 (2015) 2045–2052. [14] African Cancer Registry Network (2015) http://afcrn.org. [15] World Health Organization: National cancer control programmes (2015) http://www.who.int/cancer/nccp/en/.