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J ohnblack K. Kabukye, MBChB, MSc U ganda Cancer Institute, Kampala, Uganda

User Requirements for an Electronic Medical Records System for Oncology in Developing Countries: A Case Study of Uganda S26: Applications of Informatics from Around the World. J ohnblack K. Kabukye, MBChB, MSc U ganda Cancer Institute, Kampala, Uganda

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J ohnblack K. Kabukye, MBChB, MSc U ganda Cancer Institute, Kampala, Uganda

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  1. User Requirements for an Electronic Medical Records System for Oncology in Developing Countries: • A Case Study of Uganda S26: ApplicationsofInformatics from Around the World Johnblack K. Kabukye, MBChB, MSc Uganda Cancer Institute, Kampala, Uganda Academic Medical Center, University of Amsterdam Twitter: #AMIA2017

  2. Co-authors • Maria Hägglund, PhD Karolinska Institutet • Sabine Koch, PhD Karolinska Institutet • Ronald Cornet, PhD Academic Medical Center, University of Amsterdam • Jackson Orem, PhD Uganda Cancer Institute AMIA 2017 | amia.org

  3. Disclosure • No relevant relationships with commercial interests to disclose. AMIA 2017 | amia.org

  4. Learning Objectives • After participating in this session the learner should be better able to: • Understand user requirements for an EMR suitable for oncology in resource-poor settings, and how they compare to resource-rich settings • Understand the socio-technical differences between resource-poor and resource-rich settings that lead to the differences in user requirements for an EMR. AMIA 2017 | amia.org

  5. Introduction • Cancer is a major public health challenge worldwide • 17.5 million cases in 2015 • 8.7 million deaths • More deaths than HIV/AIDS, Malaria and Tuberculosis combined! AMIA 2017 | amia.org

  6. Introduction • Over 70% of cancer burden is in developing countries • Current healthcare system not able to deal with the cancer epidemic • Adoption of Health IT e.g. EMRs is low • Special requirements for oncology – CORE Whitepaper, CICERO model AMIA 2017 | amia.org

  7. Introduction • Uganda Cancer Institute in Kampala begun the process of implementing an EMR in 2015 • Off-the-shelf system, Clinic Master, was procured • This study aimed at eliciting user requirements to inform customization of the system to suit UCI AMIA 2017 | amia.org

  8. Uganda Cancer Institute • Public, specialist (cancer) • Est 1967 by Uganda MoH, US NCI, Makerere Uni • Now, 100+ beds • 4000 new patients annually • 400 staff, about half are clinical • Cancer care, research and training • Collaborations – Fred Hutch, AMC, UVA, KI AMIA 2017 | amia.org

  9. Uganda Cancer Institute AMIA 2017 | amia.org

  10. Methods • Qualitative – Focus group discussion and follow-up interviews • Semi-structured: probes on tasks/workflow, documentation/information needs and challenges/wishes • A workshop on EMRs in general, and Requirements engineering was done prior to the FGD to give insight to participants since they many lack experience with the EMR AMIA 2017 | amia.org

  11. Participants • Purposively selected • Interviews with only 01, 02, 05, 06 and 08 AMIA 2017 | amia.org

  12. Data collection • Audio recorded FGD and Interviews • FGD lasted 2 hours • Follow-up interviews within a week after the FGD, lasted about 25 minutes • Period: Feb – March 2016 • Ethics: Approval by UCI REC AMIA 2017 | amia.org

  13. Analysis • Recordingstranscribeverbatim and deductivequalitativecontentanalysisdone by JK in discussionwith co-authors • Comparedwith CORE Whitepaper • Note: JK works as a medicaldoctor at the UCI since 2012 whichhelped in understandingof the content AMIA 2017 | amia.org

  14. Results • Workflow analysis AMIA 2017 | amia.org

  15. Results • Paper-based documentation currently AMIA 2017 | amia.org

  16. Results: The requirements • Standardized and Structured clinical documentation • for consistence and completeness • allow reuse especially for research and reporting • accessibility and security AMIA 2017 | amia.org

  17. Results: The requirements • The EMR should support oncology specific documentation • Cancer diagnosis, stage, tumordescription for proper monitoring • Cancer risk factors • Treatment – chemo, radiotherapy • Investigations – multitudeofroutinelabworkup, histologyreports, tumor markers AMIA 2017 | amia.org

  18. Results: The requirements • The EMR should support care coordination and communication • Chronic care, multi-disciplinary care teams and several care points (In & outpatient clinics, labs, pharmacy, surgery, radiotherapy, tumor boards, etc) • Real-timestorage and transmission ofclinical information and messeges to all care team membersavoiderrors, delays or wastagee.g. in repeatitionof tests • Scheduling • Communication with patients AMIA 2017 | amia.org

  19. Results: The requirements • Support for order entry and results management • Improve efficiency - Avoid delays and wastage AMIA 2017 | amia.org

  20. Results: The requirements • Quote: • ".. many patients are sometimes lost up within the system because .. UCI has more than three campuses ... and some patients tend to cut across all these areas. For instance a patient is seen by a surgeon, the surgeon does mastectomy ... sends the patient for radiation at the lower campus... the radiation oncologist .. attends to the radiation part of it and if the patient is not well informed that you need further chemotherapy, that patient may be lost to follow-up" -- Participant 02, Doctor (Internist) AMIA 2017 | amia.org

  21. Results: The requirements • Quote: • “.. people who died at home.., we have to be able to track patients... a way of contacting patients.. maybe somewhere where we can incorporate a patient's contact.... to be able to call them.. Also because our patients come periodically we have to be able to incorporate into the system a scheduling system for instance, if someone is on a 3 weekly schedule of chemotherapy, the system should be able to .. I don't know how it works but it should be able to say patient A, patient B, patient C… are the ones who are supposed to come tomorrow or the other day, so that it helps one, the records people to prepare the files, 2, the nurses to know how many patients are coming, 3, to deal with people who.. unscheduled visits" - Participant 01, Junior doctor AMIA 2017 | amia.org

  22. Results: The requirements • Computerized clinical decision support and safety checks • Help in making diagnosis and staging, prescription of right treatment protocols, doses, schedules • Because there is task-shifting and some clinicians lack “Specialized knowledge” or “oncology specific training”, and because cancer care in complex and prone to errors • e.g. checking ceiling doses, reminders on follow-up tests, customization of treatment basing on patient characteristics or available resources AMIA 2017 | amia.org

  23. Results: The requirements • Quote: • ".... So if this program is able to get all [staging workup information] that we feed it in at the end of the day it prescribes a specific stage…. once a stage of the cancer is prescribed then we need more guidance with the specific treatment." - Participant 02, Doctor (Internist) AMIA 2017 | amia.org

  24. Results: The requirements • Quote: • ".. Once observations are entered patient's e-file then probably they can give a siren or can give a warning that you know this temperature you need to act this BP you need to act."- Participant 02, Doctor (Internist) AMIA 2017 | amia.org

  25. Results: The requirements • Quote: • "If the patient was treated with doxorubicin the program gives an alert: echo at six months, echo at 1 year, echo every year after treatment..." - Participant 02, Doctor (Internist) AMIA 2017 | amia.org

  26. Results: The requirements • Inventory/stock management • Treatment decisions are influenced by available drugs • Drugs are procured through a central national medical stores that needs real-time stock data to make supplies which is difficult with the paper records AMIA 2017 | amia.org

  27. Results: The requirements • Meeting the constraints/Fitting into context • CDSS: Protocol modifications basing on unique issues such as co-morbidities like HIV, malnutrition – because many time protocols are adapted from western countries • Allow flexibility and autonomy of the user – allow the clinician to override CDSS • Challenging technological infrastructure e.g. poor internet connection, unreliable electricity AMIA 2017 | amia.org

  28. Results: The requirements • Quote: • "In 24 hours, there are 10 blackouts in Uganda... Even when you talk about a backup generator, with fuel, this fuel must come from ministry of energy“-- Participant 07, Pediatrician AMIA 2017 | amia.org

  29. Results: The requirements • Quote: • “…if I get the protocol developed in the UK or the US to be used here,... we must modify them based on some small criteria like nutrition status of the patient." -- Participant 07, Pediatrician AMIA 2017 | amia.org

  30. Discussion • Oncology EMR has requirementsthatmight be different from othermedicalspecialities – agreementwith CORE Whitepaper, CICERO • Resourceconstraints and otherdifference in contextsalso pose different requirements • Emphasis on structured and standardized data collection to allowreuse AMIA 2017 | amia.org

  31. Discussion • Differences in finerdetailsthatarecontextspecific • ID data e.g. SSN, RFID whichparticipantsaren’tfamiliarwith • Support foclinicaltrials • Billing • Cautionwith CDSS - need for userautonomy, ability to customize to fit withcontext AMIA 2017 | amia.org

  32. Strength of the study • Usercentered approach • Participantswithvaryingbackgrounds • Multiplequalitative data collectionmethods AMIA 2017 | amia.org

  33. Weakness of the study • Only opinions or design ideas, no prototype • Prioritizationof the requirements not done AMIA 2017 | amia.org

  34. Future steps • Prioritizationofrequirements • Implementing the requirementsinto a customized version of the EMR and testingthemwith the users • Assessmentofother socio-technical/organizationalissuesaffecting implementation – e.g. readinessassessment AMIA 2017 | amia.org

  35. Conclusion • Oncology has special requirementsresulting from itscomplexity • Resource limitation and differences in organizationofhealthcareadd extra constraints and thus extra requirements AMIA 2017 | amia.org

  36. Acknowledgements • The Swedish Institute (si.se) • Uganda Cancer Institute AMIA 2017 | amia.org

  37. AMIA is the professional home for more than 5,400 informatics professionals, representing frontline clinicians, researchers, public health experts and educators who bring meaning to data, manage information and generate new knowledge across the research and healthcare enterprise. AMIA 2017 | amia.org

  38. Thank you! Email me at: jkabukye@gmail.com LinkedIn:

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