Tailoring Mobile Data Collection for Intervention Research in a Challenging Context: Development and Implementation in the Malakit Study

Yann Lambert, Muriel Galindo, Martha Suárez-Mutis, Louise Mutricy, Alice Sanna, Laure Garancher, Hedley Cairo, Helene Hiwat, Jane Bordalo Miller, José Hermenegildo Gomes, Paola Marchesini, Antoine Adenis, Mathieu Nacher, Stephen Vreden, Maylis Douine, Yann Lambert, Muriel Galindo, Martha Suárez-Mutis, Louise Mutricy, Alice Sanna, Laure Garancher, Hedley Cairo, Helene Hiwat, Jane Bordalo Miller, José Hermenegildo Gomes, Paola Marchesini, Antoine Adenis, Mathieu Nacher, Stephen Vreden, Maylis Douine

Abstract

Background: An interventional study named Malakit was implemented between April 2018 and March 2020 to address malaria in gold mining areas in French Guiana, in collaboration with Suriname and Brazil. This innovative intervention relied on the distribution of kits for self-diagnosis and self-treatment to gold miners after training by health mediators, referred to in the project as facilitators.

Objective: This paper aims to describe the process by which the information system was designed, developed, and implemented to achieve the monitoring and evaluation of the Malakit intervention.

Methods: The intervention was implemented in challenging conditions at five cross-border distribution sites, which imposed strong logistical constraints for the design of the information system: isolation in the Amazon rainforest, tropical climate, and lack of reliable electricity supply and internet connection. Additional constraints originated from the interaction of the multicultural players involved in the study. The Malakit information system was developed as a patchwork of existing open-source software, commercial services, and tools developed in-house. Facilitators collected data from participants using Android tablets with ODK (Open Data Kit) Collect. A custom R package and a dashboard web app were developed to retrieve, decrypt, aggregate, monitor, and clean data according to feedback from facilitators and supervision visits on the field.

Results: Between April 2018 and March 2020, nine facilitators generated a total of 4863 form records, corresponding to an average of 202 records per month. Facilitators' feedback was essential for adapting and improving mobile data collection and monitoring. Few technical issues were reported. The median duration of data capture was 5 (IQR 3-7) minutes, suggesting that electronic data capture was not taking more time from participants, and it decreased over the course of the study as facilitators become more experienced. The quality of data collected by facilitators was satisfactory, with only 3.03% (147/4849) of form records requiring correction.

Conclusions: The development of the information system for the Malakit project was a source of innovation that mirrored the inventiveness of the intervention itself. Our experience confirms that even in a challenging environment, it is possible to produce good-quality data and evaluate a complex health intervention by carefully adapting tools to field constraints and health mediators' experience.

Trial registration: ClinicalTrials.gov NCT03695770; https://ichgcp.net/clinical-trials-registry/NCT03695770.

Keywords: Guiana Shield; ODK; Open Data Kit; information system; malaria; mobile data collection.

Conflict of interest statement

Conflicts of Interest: None declared.

©Yann Lambert, Muriel Galindo, Martha Suárez-Mutis, Louise Mutricy, Alice Sanna, Laure Garancher, Hedley Cairo, Helene Hiwat, Jane Bordalo Miller, José Hermenegildo Gomes, Paola Marchesini, Antoine Adenis, Mathieu Nacher, Stephen Vreden, Maylis Douine. Originally published in JMIR Formative Research (https://formative.jmir.org), 16.06.2022.

Figures

Figure 1
Figure 1
Distribution sites and staff of the Malakit study, Guiana Shield, April 2018-March 2020.
Figure 2
Figure 2
Constraints influencing the design of the Malakit information system (Malakit study, Guiana Shield, April 2018-March 2020).
Figure 3
Figure 3
Information system of the Malakit study (collection and flow of data), Guiana Shield, April 2018-March 2020. (1) Mobile data collection by facilitators with Android tablets and storage on the Ona server. (2) Data retrieval, decryption, and aggregation with the MalakitR package. (3) Monitoring of visit reports with the Malakit dashboard web app. (4) Data cleaning with the MalakitR package. admin: administrator; EDC: electronic data capture; ICF: informed consent form; MDM: mobile device management; ODK: Open Data Kit; REST API: representational state transfer application programming interface; XForm: form standard used by ODK; XLS: Microsoft Excel spreadsheet.
Figure 4
Figure 4
Screenshot of the Onde app (Malakit study, Guiana Shield, April 2018-March 2020).
Figure 5
Figure 5
Data monitoring with the Malakit dashboard web app (Malakit study, Guiana Shield, April 2018-March 2020) A. Example of data records monitored. B. Flow of data reviewing and validation. Screened visit records are flagged with "No alert" (1) or "Alert" status (2), leading to manual review (3). After review and the facilitator’s feedback, records are validated (4) or flagged for correction (5) and patched (6). Records can be screened against new alert rules (7).
Figure 6
Figure 6
Number and proportion of records for inclusion and follow-up visits according to the 6-month period of study (Malakit study, Guiana Shield, April 2018-March 2020).
Figure 7
Figure 7
Duration of data entry for the inclusion and follow-up questionnaires, with and without malaria episodes reported by participants (Malakit study, Guiana Shield, April 2018-March 2020). The horizontal lines within the boxes represent medians and the whiskers represent IQRs.

References

    1. Douine M, Lambert Y, Musset L, Hiwat H, Blume L, Marchesini P, Moresco G, Cox H, Sanchez J, Villegas L, de Santi VP, Sanna A, Vreden S, Suarez-Mutis M. Malaria in gold miners in the Guianas and the Amazon: Current knowledge and challenges. Curr Trop Med Rep. 2020 Mar 21;7(2):37–47. doi: 10.1007/s40475-020-00202-5.
    1. Douine M, Musset L, Corlin F, Pelleau S, Pasquier J, Mutricy L, Adenis A, Djossou F, Brousse P, Perotti F, Hiwat H, Vreden S, Demar M, Nacher M. Prevalence of Plasmodium spp. in illegal gold miners in French Guiana in 2015: A hidden but critical malaria reservoir. Malar J. 2016 Jun 09;15(1):315. doi: 10.1186/s12936-016-1367-6. 10.1186/s12936-016-1367-6
    1. Douine M, Mosnier E, Le Hingrat Q, Charpentier C, Corlin F, Hureau L, Adenis A, Lazrek Y, Niemetsky F, Aucouturier A, Demar M, Musset L, Nacher M. Illegal gold miners in French Guiana: A neglected population with poor health. BMC Public Health. 2017 Jul 17;18(1):23. doi: 10.1186/s12889-017-4557-4. 10.1186/s12889-017-4557-4
    1. Douine M, Lazrek Y, Blanchet D, Pelleau S, Chanlin R, Corlin F, Hureau L, Volney B, Hiwat H, Vreden S, Djossou F, Demar M, Nacher M, Musset L. Predictors of antimalarial self-medication in illegal gold miners in French Guiana: A pathway towards artemisinin resistance. J Antimicrob Chemother. 2018 Jan 01;73(1):231–239. doi: 10.1093/jac/dkx343.4555400
    1. Le Tourneau FM. Chercheurs d’Or - L’Orpaillage Clandestin en Guyane Française. Paris, France: CNRS Éditions; 2020. Jul 02,
    1. Douine M, Sanna A, Galindo M, Musset L, Pommier de Santi V, Marchesini P, Magalhaes ED, Suarez-Mutis M, Hiwat H, Nacher M, Vreden S, Garancher L. Malakit: An innovative pilot project to self-diagnose and self-treat malaria among illegal gold miners in the Guiana Shield. Malar J. 2018 Apr 10;17(1):158. doi: 10.1186/s12936-018-2306-5. 10.1186/s12936-018-2306-5
    1. Galindo MS, Lambert Y, Mutricy L, Garancher L, Bordalo Miller J, Gomes JH, Sanna A, Peterka C, Hilderal H, Cairo H, Hiwat H, Nacher M, Suárez-Mutis MC, Vreden S, Douine M. Setting-up a cross-border action-research project to control malaria in remote areas of the Amazon: Describing the birth and milestones of a complex international project (Malakit) Malar J. 2021 May 11;20(1):216. doi: 10.1186/s12936-021-03748-5. 10.1186/s12936-021-03748-5
    1. Moore GF, Audrey S, Barker M, Bond L, Bonell C, Hardeman W, Moore L, O'Cathain A, Tinati T, Wight D, Baird J. Process evaluation of complex interventions: Medical Research Council guidance. BMJ. 2015 Mar 19;350(mar19 6):h1258. doi: 10.1136/bmj.h1258.
    1. Galindo MS, Lambert Y, Mutricy L, Garancher L, Miller JB, Gomes JH, Sanna A, Peterka C, Cairo H, Hiwat H, Adenis A, Nacher M, Suárez-Mutis MC, Vreden S, Douine M. Implementation of a novel malaria management strategy based on self-testing and self-treatment in remote areas in the Amazon (Malakit): Confronting a-priori assumptions with reality. BMC Public Health. 2022 Apr 15;22(1):770. doi: 10.1186/s12889-022-12801-0. 10.1186/s12889-022-12801-0
    1. Mosnier E, Garancher L, Galindo M, Djossou F, Moriceau O, Hureau-Mutricy L, Barbosa R, Lambert Y, Lazrek Y, Musset L, Douine M. Paludisme en Guyane: Des projets de recherche opérationnelle originaux s ’appuyant sur la santé communautaire. Lett Infect. 2020 Apr 30;:50–57.
    1. The kit. Malakit Project. [2022-04-28].
    1. Galaxy Tab A 7.0. Samsung. [2022-04-28].
    1. Collect data anywhere. ODK. [2022-04-28]. .
    1. Hartung C. Open Data Kit: Technologies for Mobile Data Collection and Deployment Experiences in Developing Regions [doctoral thesis] Seattle, WA: University of Washington; 2012. Sep 13, [2020-12-21]. .
    1. General Data Protection Regulation (GDPR) [2022-04-28].
    1. Ona. [2022-04-28].
    1. KoBoToolbox. [2022-04-28].
    1. Form building tools. ODK Docs. [2022-04-28].
    1. . [2022-04-28].
    1. Lambert Y. MalakitR package. GitHub. [2022-04-28]. .
    1. The R Project for Statistical Computing. R Project. [2022-04-28].
    1. RStudio. [2022-04-28].
    1. Ona JSON REST API endpoints. Ona API. [2022-04-28]. .
    1. ODK Briefcase. ODK Docs. [2022-04-28].
    1. Lambert Y. Decipher. GitHub. [2022-04-28]. .
    1. Security and privacy. ODK Docs. [2022-04-28].
    1. Vue.js. [2022-04-28].
    1. The facilitators: Key people in the Malakit project. Malakit Project. 2020. Oct, [2022-04-28].
    1. Satterlee E, McCullough L, Dawson M, Cheung K. Paper-to-Mobile Data Collection: A Manual. Washington, DC: US Global Development Lab, USAID; 2018. Oct 18, [2022-04-30]. .
    1. Park JY, Kim DR, Haldar B, Mallick AH, Kim SA, Dey A, Nandy RK, Paul DK, Choudhury S, Sahoo S, Wierzba TF, Sur D, Kanungo S, Ali M, Manna B. Use of the data system for field management of a clinical study conducted in Kolkata, India. BMC Res Notes. 2016 Jan 09;9:20. doi: 10.1186/s13104-015-1767-7. 10.1186/s13104-015-1767-7
    1. Labrique AB, Wadhwani C, Williams KA, Lamptey P, Hesp C, Luk R, Aerts A. Best practices in scaling digital health in low and middle income countries. Global Health. 2018 Nov 03;14(1):103. doi: 10.1186/s12992-018-0424-z. 10.1186/s12992-018-0424-z
    1. Marks M, Lal S, Brindle H, Gsell PS, MacGregor M, Stott C, van de Rijdt M, Gutiérrez Almazor G, Golia S, Watson C, Diallo A, Toure A, Houlihan C, Keating P, Martin H, Henao Restrepo AM, Anokwa Y, Roberts C. Electronic data management in public health and humanitarian crises. Upgrades, scalability and impact of ODK. Research Square. Preprint posted online on August 12, 2020. doi: 10.21203/-52854/v1.
    1. Tom-Aba D, Olaleye A, Olayinka AT, Nguku P, Waziri N, Adewuyi P, Adeoye O, Oladele S, Adeseye A, Oguntimehin O, Shuaib F. Innovative technological approach to Ebola virus disease outbreak response in Nigeria using the Open Data Kit and Form Hub technology. PLoS One. 2015 Jun 26;10(6):e0131000. doi: 10.1371/journal.pone.0131000. PONE-D-14-53622
    1. Maduka O, Akpan G, Maleghemi S. Using Android and Open Data Kit technology in data management for research in resource-limited settings in the Niger Delta region of Nigeria: Cross-sectional household survey. JMIR Mhealth Uhealth. 2017 Nov 30;5(11):e171. doi: 10.2196/mhealth.7827. v5i11e171
    1. Naker K, Gaskell KM, Dorjravdan M, Dambaa N, Roberts CH, Moore DAJ. An e-registry for household contacts exposed to multidrug resistant TB in Mongolia. BMC Med Inform Decis Mak. 2020 Aug 12;20(1):188. doi: 10.1186/s12911-020-01204-z. 10.1186/s12911-020-01204-z
    1. Sivaraman S, Soni P. Leveraging technology for optimization of health survey research. J Health Manag. 2019 Nov 25;21(4):571–581. doi: 10.1177/0972063419884444.
    1. Sharif B, Lundin RM, Morgan P, Hall JE, Dhadda A, Mann C, Donoghue D, Brownlow E, Hill F, Carr G, Turley H, Hassall J, Atkinson M, Jones M, Martin R, Rollason S, Ibrahim Y, Kopczynska M, Szakmany T, Welsh Digital Data Collection Platform Collaborators (see Appendix A) Developing a digital data collection platform to measure the prevalence of sepsis in Wales. J Am Med Inform Assoc. 2016 Nov;23(6):1185–1189. doi: 10.1093/jamia/ocv208.ocv208
    1. Kenny A, Gordon N, Downey J, Eddins O, Buchholz K, Menyon A, Mansah W. Design and implementation of a mobile health electronic data capture platform that functions in fully-disconnected settings: A pilot study in rural Liberia. BMC Med Inform Decis Mak. 2020 Feb 22;20(1):39. doi: 10.1186/s12911-020-1059-6. 10.1186/s12911-020-1059-6
    1. Style S, Beard BJ, Harris-Fry H, Sengupta A, Jha S, Shrestha BP, Rai A, Paudel V, Thondoo M, Pulkki-Brannstrom A, Skordis-Worrall J, Manandhar DS, Costello A, Saville NM. Experiences in running a complex electronic data capture system using mobile phones in a large-scale population trial in southern Nepal. Glob Health Action. 2017 Jun 14;10(1):1330858. doi: 10.1080/16549716.2017.1330858.
    1. Chow PI. Developing mental or behavioral health mobile apps for pilot studies by leveraging survey platforms: A do-it-yourself process. JMIR Mhealth Uhealth. 2020 Apr 20;8(4):e15561. doi: 10.2196/15561. v8i4e15561
    1. Katarahweire M, Bainomugisha E, Mughal KA. Data classification for secure mobile health data collection systems. Dev Eng. 2020;5:100054. doi: 10.1016/j.deveng.2020.100054.
    1. Ruth CJ, Huey SL, Krisher JT, Fothergill A, Gannon BM, Jones CE, Centeno-Tablante E, Hackl LS, Colt S, Finkelstein JL, Mehta S. An electronic data capture framework (ConnEDCt) for global and public health research: Design and implementation. J Med Internet Res. 2020 Aug 13;22(8):e18580. doi: 10.2196/18580. v22i8e18580
    1. Harris-Fry H, Beard BJ, Harrisson T, Paudel P, Shrestha N, Jha S, Shrestha BP, Manandhar DS, Costello A, Saville NM. Smartphone tool to collect repeated 24 h dietary recall data in Nepal. Public Health Nutr. 2017 Aug 31;21(2):260–272. doi: 10.1017/s136898001700204x.
    1. Leal Neto OB, Loyo R, Albuquerque J, Perazzo J, Barbosa V, Barbosa CS. Using mobile technology to conduct epidemiological investigations. Rev Soc Bras Med Trop. 2015 Feb;48(1):105–107. doi: 10.1590/0037-8682-0181-2014. S0037-86822015000100105
    1. Blumenberg C, Barros AJD. Electronic data collection in epidemiological research. The use of REDCap in the Pelotas birth cohorts. Appl Clin Inform. 2016 Jul 13;7(3):672–681. doi: 10.4338/ACI-2016-02-RA-0028. 2016-02-RA-0028
    1. Comulada WS, Tang W, Swendeman D, Cooper A, Wacksman J, Adolescent Medicine Trials Network (ATN) CARES Team Development of an electronic data collection system to support a large-scale HIV behavioral intervention trial: Protocol for an electronic data collection system. JMIR Res Protoc. 2018 Dec 14;7(12):e10777. doi: 10.2196/10777. v7i12e10777
    1. Steinberg M, Schindler S, Klan F. Software solutions for form-based, mobile data collection - A comparative evaluation. Proceedings of the Datenbanksysteme für Business, Technologie und Web - Workshop. Gesellschaft für Informatik; Datenbanksysteme für Business, Technologie und Web - Workshop. Gesellschaft für Informatik; March 4-8, 2019; Rostock, Germany. 2019. pp. 135–144.
    1. King C, Hall J, Banda M, Beard J, Bird J, Kazembe P, Fottrell E. Electronic data capture in a rural African setting: Evaluating experiences with different systems in Malawi. Glob Health Action. 2014 Oct 30;7(1):25878. doi: 10.3402/gha.v7.25878. 25878
    1. Humanitarian Operations Mobile Acquisition of Data (NOMAD) Elrha. [2022-04-28].
    1. Impact Tracker Tech. Kopernik. [2022-04-28].
    1. Braun R, Catalani C, Wimbush J, Israelski D. Community health workers and mobile technology: A systematic review of the literature. PLoS One. 2013 Jun;8(6):e65772. doi: 10.1371/journal.pone.0065772. PONE-D-13-00075
    1. Shiferaw S, Workneh A, Yirgu R, Dinant G, Spigt M. Designing mHealth for maternity services in primary health facilities in a low-income setting - Lessons from a partially successful implementation. BMC Med Inform Decis Mak. 2018 Nov 12;18(1):96. doi: 10.1186/s12911-018-0704-9. 10.1186/s12911-018-0704-9
    1. Webster-Smith M, Paulding C, Burnett S, Jeffs L, Ismail D, McNamara C, Ereira S, Lewis R, Hall E, Bliss J, Snowdon C. Implementing electronic data capture (EDC) training for site staff. Proceedings of the 3rd International Clinical Trials Methodology Conference; The 3rd International Clinical Trials Methodology Conference; November 16-17, 2015; Glasgow, UK. 2015. p. P41.
    1. Douine M, Lambert Y, Galindo M, Mutricy L, Sanna A, Peterka C, Marchesini P, Hiwat H, Nacher M, Adenis A, Demar M, Musset L, Lazrek Y, Cairo H, Bordalo Miller J, Vreden S, Suarez-Mutis M. Self-diagnosis and self-treatment of malaria in hard-to-reach and mobile populations of the Amazon: Results of Malakit, an international multicentric intervention research project. Lancet Reg Health Am. 2021 Dec;4:100047. doi: 10.1016/j.lana.2021.100047.
    1. Dickinson FM, McCauley M, Madaj B, van den Broek N. Using electronic tablets for data collection for healthcare service and maternal health assessments in low resource settings: Lessons learnt. BMC Health Serv Res. 2019 May 27;19(1):336. doi: 10.1186/s12913-019-4161-7. 10.1186/s12913-019-4161-7
    1. Mugisha A, Krumsvik O, Tylleskar T, Babic A. Data collectors’ design preferences for mobile electronic data capturing forms. In: Hasman A, Gallos P, Liaskos J, Househ MS, Mantas J, editors. Data, Informatics and Technology: An Inspiration for Improved Healthcare. Amsterdam, the Netherlands: IOS Press BV; 2018. pp. 93–96.
    1. Ley B, Rijal KR, Marfurt J, Adhikari NR, Banjara MR, Shrestha UT, Thriemer K, Price RN, Ghimire P. Analysis of erroneous data entries in paper based and electronic data collection. BMC Res Notes. 2019 Aug 22;12(1):537. doi: 10.1186/s13104-019-4574-8. 10.1186/s13104-019-4574-8
    1. Stover B, Lubega F, Namubiru A, Bakengesa E, Luboga SA, Makumbi F, Kiwanuka N, Ndizihiwe A, Mukooyo E, Hurley E, Lim T, Borse NN, Bernhardt J, Wood A, Sheppard L, Barnhart S, Hagopian A. Conducting a large public health data collection project in Uganda: Methods, tools, and lessons learned. J Res Pract. 2018;14(1):M1.
    1. De Sutter E, Zaçe D, Boccia S, Di Pietro ML, Geerts D, Borry P, Huys I. Implementation of electronic informed consent in biomedical research and stakeholders' perspectives: Systematic review. J Med Internet Res. 2020 Oct 08;22(10):e19129. doi: 10.2196/19129. v22i10e19129
    1. Skelton E, Drey N, Rutherford M, Ayers S, Malamateniou C. Electronic consenting for conducting research remotely: A review of current practice and key recommendations for using e-consenting. Int J Med Inform. 2020 Nov;143:104271. doi: 10.1016/j.ijmedinf.2020.104271. S1386-5056(20)31016-9
    1. Kaewkungwal J, Apidechkul T, Jandee K, Khamsiriwatchara A, Lawpoolsri S, Sawang S, Sangvichean A, Wansatid P, Krongrungroj S. Application of mobile technology for improving expanded program on immunization among highland minority and stateless populations in northern Thailand border. JMIR Mhealth Uhealth. 2015 Jan 14;3(1):e4. doi: 10.2196/mhealth.3704. v3i1e4
    1. Ullrich L, Khoudary H. WhatsApp Surveying Guide: Lessons Learnt From Two Qualitative WhatsApp Surveys in Lebanon. New York, NY: United Nations Development Programme; 2018. [2022-04-30]. .
    1. COVAIL (GoSecure) Photon package. GitHub. [2022-04-28]. .
    1. Mayer FW. ruODK: An R client for the ODK central API. Zenodo. 2021. [2022-04-28]. .
    1. ODK-X. [2022-04-28].
    1. Brunette W, Sudar S, Sundt M, Larson C, Beorse J, Anderson R. Open Data Kit 2.0: A services-based application framework for disconnected data management. Proceedings of the 15th Annual International Conference on Mobile Systems, Applications, and Services; The 15th Annual International Conference on Mobile Systems, Applications, and Services; June 19-23, 2017; Niagara Falls, NY. New York, NY: Association for Computing Machinery; 2017. pp. 440–452.
    1. Saldanha R, Mosnier É, Barcellos C, Carbunar A, Charron C, Desconnets J, Guarmit B, Gomes MDSM, Mandon T, Mendes AM, Peiter PC, Musset L, Sanna A, Van Gastel B, Roux E. Contributing to elimination of cross-border malaria through a standardized solution for case surveillance, data sharing, and data interpretation: Development of a cross-border monitoring system. JMIR Public Health Surveill. 2020 Sep 01;6(3):e15409. doi: 10.2196/15409. v6i3e15409

Source: PubMed

3
구독하다