A training programme to build cancer research capacity in low- and middle-income countries: findings from Guatemala
Lauren D Arnold a, Joaquin Barnoya b, Eduardo N Gharzouzi c, Peter Benson d & Graham A Colditz b
a. College for Public Health and Social Justice, Saint Louis University, 3545 Lafayette Avenue, Saint Louis, MO, 63104, United States of America (USA).
b. School of Medicine, Washington University in Saint Louis, Saint Louis, USA.
c. Instituto de Cancerología, Guatemala City, Guatemala.
d. College of Arts and Sciences, Washington University in Saint Louis, Saint Louis, USA.
Correspondence to Lauren D Arnold (e-mail: email@example.com).
(Submitted: 27 June 2013 – Revised version received: 13 November 2013 – Accepted: 20 November 2013 – Published online: 09 December 2013.)
Bulletin of the World Health Organization 2014;92:297-302. doi: http://dx.doi.org/10.2471/BLT.13.126516
A disproportionate burden of the recent global increase seen in cancer incidence and mortality is shouldered by low- and middle-income countries (LMICs). This is due in part to population ageing in LMICs, but shifts in the prevalences of modifiable risk factors – such as smoking and obesity – have also played a role.1 The United Nations and the Pan American Health Organization (PAHO) cite cancer surveillance, research and capacity building in LMICs as critical elements in the prevention and control of cancer worldwide.2-4 The World Health Organization (WHO) has emphasized the importance of capacity building that reaches beyond the development of infrastructure and resources to include the strengthening of in-country competence for conducting high-quality research.5 Potter & Brough developed a “capacity model” that addressed the building of infrastructures, systems, skills and tools, particularly in LMICs.6 In this article, we illustrate one application of this “Potter–Brough” model that is responsive to the cancer needs of Guatemala – a lower-middle-income country in Latin America.
Guatemala: context for capacity building
Although cancer is the third leading cause of mortality in the country,7 Guatemala lacks a population-based surveillance system7 and only has limited services for cancer prevention and control. According to WHO – which has used Guatemala as an example of a country with a critical need to incentivize health research – the retention of “clinician researchers”, research that informs policy and systems changes, and institutional commitment are all key to building cancer research capacity in the country and addressing the country’s cancer needs.8
The Instituto de Cancerología (INCAN) in Guatemala City serves as the point of referral and service for Guatemala’s cancer patients. Access to adequate medical care in general – and oncological care in particular – is so poor in many areas of Guatemala that most cancers are not diagnosed until they are advanced. More than 70% of INCAN’s patients present with late-stage disease. The country’s oncologists are keen to develop strategies to reduce the late-stage diagnoses and improve outcomes. Although INCAN focuses on diagnosis and treatment and collects no population-based data, its medical records currently provide the best data available for estimating the national cancer burden in Guatemala.9 Recently, INCAN’s administration expressed an interest in collecting better, population-based data on which more accurate estimates of the country’s cancer burden – and more effective initiatives for cancer prevention and control – could be based. INCAN is slowly developing into a resource for the development of agendas for the future prevention and control of cancer in Guatemala.
In a partnership between INCAN and the School of Medicine of Washington University in Saint Louis (Saint Louis, United States of America), the Cancer Control Research Training Institute was developed at INCAN in September 2010. This was in response to Guatemala’s increasing cancer burden and INCAN’s recognition of the need to train clinician researchers in population health methods – so that such individuals can study and address Guatemala’s cancer needs. The long-term goal is to establish a sustainable training programme to develop capacity for research that could improve cancer-related policy health systems and disease management. Key features of the year-long programme described here included multidisciplinary training, didactic sessions, a mentored dyadic experience and applied training through the development of research protocols that are responsive to Guatemala’s needs (Fig. 1).
Fig. 1. Building cancer research capacity, Guatemala, 2012
For the first, year-long training programme, 10 clinicians – five from the United States and five from Guatemala – were selected to participate, via a competitive application process. Participants engaged in training sessions – in English – in biostatistics, epidemiology, research methods, data collection and management, ethics and anthropology. The participants were separated into five pairs – each comprising a clinician from Guatemala and one from the United States – and each pair was matched with a mentor who was a member of the academic staff at the School of Medicine of Washington University in Saint Louis. Via e-mails and voice-over-Internet-protocol conversations, each pair and its mentor developed an early-stage research project that addressed a cancer need in Guatemala.
Structures and systems
At the “ground level” of the Potter–Brough model are the structures, systems and roles that address information flow and the authority to make decisions.6 A key component of the Cancer Control Research Training Institute was the “buy-in” from INCAN’s leadership and the Liga Nacional Contra el Cáncer Guatemala – INCAN’s sponsor. Also crucial was a train-the-trainer model, in which a member of INCAN’s staff who had decision-making authority participated in the training programme. As INCAN does not have an institutional review board, it was arranged for a Guatemalan university – the Universidad Francisco Marroquín – to review the research protocols that were produced in the training programme. Although this arrangement set the foundation for research in the near future, INCAN’s administrators recognized the importance of establishing their own institutional review board to sustain the research capacity that they aim to build.
Staff and infrastructure
The second level of the Potter–Brough model addresses the presence of facilities, resources and staff to support the work being done. Our training programme relied on on-site training in two countries and Internet-based communications. These activities required classrooms, academic staff, computer access and support and Internet connections that supported “online meetings”. We had to identify academic staff who were willing and able to add new responsibilities – trainee instruction and mentoring – to their workloads. A careful examination of existing work schedules was key to solidifying the commitment of academic staff. Administrative support for travel, scheduling and financial logistics was provided by Washington University in Saint Louis.
The third tier of the Potter–Brough model involves the building of individual-level knowledge, skills and confidence to engage in activities. These aspects of capacity building formed the crux of our training programme. It was a lack of available training in population-based cancer research for oncologists that motivated the programme’s creation. Didactic sessions were developed to build knowledge and skills in epidemiology, biostatistics, research ethics and regulation, data collection and management and sociocultural anthropology. Each of these sessions was led by an instructor with graduate-level training in public health or anthropology.
The trainee’s perceptions of their own research abilities were assessed by using a clinical research appraisal inventory. This tool, which was developed to assess clinician-scientists’ self-efficacy to perform clinical research,10 has been used to evaluate training programmes in clinical research.11 Between the initiation and end of our training programme, participants demonstrated substantial improvements in their self-perceived efficacy for study conceptualization, study planning and the ethical conduct of research (data not shown).
The fourth and final level of the Potter–Brough model describes “performance capacity” – i.e. the availability of resources needed to complete activities. The best-trained clinician researchers cannot work effectively if the resources that are available fail to meet their needs. At this level of the model, the Cancer Control Research Training Institute needed to know if the tools required for our training programme – and those required to sustain any likely future training – were available.
Before our training programme, Washington University in Saint Louis was conducting relevant coursework and activities. For our programme, these were adapted to the Guatemalan perspective. Other components of the programme were developed from scratch. For example, sessions on database management and data collection tools were not only created specifically for the programme but also adapted during the programme – to satisfy the participants’ needs as they developed their own research projects.
At the end of our training programme, it seemed clear that the ability to gather data to further Guatemala’s cancer prevention and control efforts would still be very limited if no more of INCAN’s clinicians could be trained in the relevant research methods. To begin to address this problem, INCAN translated some of the educational materials used in the training programme into Spanish and incorporated them into residency training; purchased relevant textbooks for clinician use; and established a journal club so that research discussions could be incorporated into future training.
During and after the training programme, various ancillary activities helped to build and solidify relationships that are likely to be critical to sustaining capacity for research training. In response to a dialogue initiated by the Cancer Control Research Training Institute, for example, annual cancer seminars were established in Guatemala. Each of these seminars has been built around a presentation by researchers from Washington University in Saint Louis. Although these meetings were originally planned only for INCAN’s clinicians, other clinicians from Guatemala as well as some of their counterparts from El Salvador, Honduras and Mexico, have attended recent seminars. One seminar has included a workshop on cancer pathology. At another, an anthropologist from the United States – who had worked in Guatemala – led a workshop on qualitative research and cultural competence. Clinicians from both partners involved in the training programme have met with representatives from the Liga Nacional Contra el Cáncer and the Guatemalan Ministry of Health to discuss priorities for cancer prevention, control and care in Guatemala. By highlighting the Cancer Control Research Training Institute’s activities, the Guatemalan media have helped raise awareness among the Guatemalan people about the country’s cancer burden and the need to strengthen training in cancer research to address ground-level issues such as surveillance, prevention and quality of care.
Since the end of our training programme, INCAN has established a research department and begun research collaborations with the United States National Cancer Institute, the Swiss Federal Technological Institute and the Nutrition Institute of Guatemala. Today, several of INCAN’s clinicians are engaged in research projects – on cervical and breast cancer and Mayan concepts of medicine and cancer – or, at least, applying for research grants. Most importantly, perhaps, INCAN’s administrators – in conjunction with the Guatemalan government, the International Agency for Research on Cancer, the Union for International Cancer Control and PAHO – are in the early stages of developing a national cancer registry. INCAN’s leadership credits the Cancer Control Research Training Institute with raising research interest and engaging the stakeholders needed to support the incorporation of research into INCAN’s activities.
The main lessons learnt are summarized in Box 1. Participants in our training programme gained confidence in their ability to conduct population health research and developed research protocols that have begun to address some of Guatemala’s cancer-related needs. However, some challenges were recognized that must be addressed to sustain future training. One of these was language – all trainees had to be fluent in English, partly because it was hoped they would have opportunities to present their work in English at international venues. At the time of our training programme, the Cancer Control Research Training Institute had no teachers of English, even though proficiency in English in general – and particularly in the technical English used in research – was considered essential in the training programme. A similar training programme in Spanish would benefit a broader group of the clinicians at INCAN. Trainees cited the international travel included in the training programme as critical to developing international relationships and collaborations, as well as to understanding the context in which partners worked. As such travel may not be financially sustainable in the future, the training of the next cohort may have to rely more heavily on Internet-based meetings and didactic sessions. Such online training has the advantage that it could easily be expanded to cover a large audience. Further funding will be needed to ensure that INCAN keeps up to date with resources such as software and texts. The employers of the trainees must provide the trainees with protected time for participation in training programmes and research.
Box 1. Summary of main lessons learnt
- A year-long training programme for clinicians could build useful cancer research capacity in low- and middle-income countries.
- Training in population-based research methods will enable low- or middle-income countries such as Guatemala to gather country-specific data.
- Once collected, such data can be used to assess – and guide policy for reducing – the burden of cancer-related disease and identify priority areas for cancer prevention and treatment.
INCAN’s Cancer Control Research Training Institute illustrates one approach to building capacity for cancer research, prevention and control in a low- or middle-income country such as Guatemala. By training local clinicians in research methods in population health, LMICs will be able to gather country-specific data to assess disease burden, identify priority areas for prevention and treatment, and guide policy – a critical component to addressing the global burden of cancer.12 The desired long-term outcomes specific to cancer in Guatemala include building systems to gather data for advocating for resources, guiding clinical practice, advocating for cancer prevention and control policies and monitoring the role of cancer in the health of the Guatemalan people.
This research was supported by the Fogarty International Center of the National Institutes of Health (under award number R24TW008820-01) and the National Cancer Institute of the National Institutes of Health (under award number P30CA091842-11S1). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
- Thun MJ, DeLancey JO, Center MM, Jemal A, Ward EM. The global burden of cancer: priorities for prevention. Carcinogenesis 2010; 31: 100-10 http://dx.doi.org/10.1093/carcin/bgp263 pmid: 19934210.
- Beaglehole R, Bonita R, Alleyne G, Horton R, Li L, Lincoln P, et al., Lancet NCD Action Group, et al. UN High-level Meeting on Non-Communicable Diseases: addressing four questions. Lancet 2011; 378: 449-55 http://dx.doi.org/10.1016/S0140-6736(11)60879-9 pmid: 21665266.
- Wild CP. The role of cancer research in noncommunicable disease control. J Natl Cancer Inst 2012; 104: 1051-8 http://dx.doi.org/10.1093/jnci/djs262 pmid: 22781435.
- Plan of action for the prevention and control of noncommunicable diseases. Washington: Pan American Health Organization; 2013.
- Global action plan for the prevention and control of noncommunicable diseases: 2013–2020. Geneva: World Health Organization; 2013.
- Potter C, Brough R. Systemic capacity building: a hierarchy of needs. Health Policy Plan 2004; 19: 336-45 http://dx.doi.org/10.1093/heapol/czh038 pmid: 15310668.
- Noncommunicable diseases country profiles 2011. Geneva: World Health Organization; 2011.
- Comments on the document entitled “Public health, innovation and intellectual property: report of the Expert Working Group on Research and Development Financing”. Guatemala City: World Health Organization; 2010.
- Guatemala – health in the Americas 2007. Vol. 2. Countries. Washington: Pan American Health Organization; 2007.
- Mullikin EA, Bakken LL, Betz NE. Assessing research self-efficacy in physician-scientists: the clinical research appraisal inventory. J Career Assess 2007; 15: 367-87 http://dx.doi.org/10.1177/1069072707301232.
- Lipira L, Jeffe DB, Krauss M, Garbutt J, Piccirillo J, Evanoff B, et al., et al. Evaluation of clinical research training programs using the clinical research appraisal inventory. Clin Transl Sci 2010; 3: 243-8 http://dx.doi.org/10.1111/j.1752-8062.2010.00229.x pmid: 21442017.
- Beaglehole R, Bonita R, Magnusson R. Global cancer prevention: an important pathway to global health and development. Public Health 2011; 125: 821-31 http://dx.doi.org/10.1016/j.puhe.2011.09.029 pmid: 22019360.