User Requirements for an Electronic Medical Records System

User Requirements for an Electronic Medical Records System for Oncology in Developing Countries: A Case Study of Uganda S 26: Applications of Informatics from Around the World Johnblack K. Kabukye, MBCh. B, MSc Uganda Cancer Institute, Kampala, Uganda Academic Medical Center, University of Amsterdam Twitter: #AMIA 2017

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

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

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 4

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 5

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 6

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 7

Uganda Cancer Institute AMIA 2017 | amia. org • Public, specialist (cancer) • Est 1967 by Uganda Mo. H, 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 8

Uganda Cancer Institute AMIA 2017 | amia. org 9

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 10

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

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 12

Analysis • Recordings transcribe verbatim and deductive qualitative content analysis done by JK in discussion with co-authors • Compared with CORE Whitepaper Note: JK works as a medical doctor at the UCI since 2012 which helped in understanding of the content AMIA 2017 | amia. org 13

Results Workflow analysis AMIA 2017 | amia. org 14

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

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 16

Results: The requirements • The EMR should support oncology specific documentation • Cancer diagnosis, stage, tumor description for proper monitoring • Cancer risk factors • Treatment – chemo, radiotherapy • Investigations – multitude of routine lab workup, histology reports, tumor markers AMIA 2017 | amia. org 17

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-time storage and transmission of clinical information and messeges to all care team members avoid errors, delays or wastage e. g. in repeatition of tests • • Scheduling Communication with patients AMIA 2017 | amia. org 18

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

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 20

Results: The requirements Quote: “. . people who died at home. . , we have to be able to track patients. . . a way of contacting patients. . maybe somewhere 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 21

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 22

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 23

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 24

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 25

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 26

Results: The requirements • Meeting the constraints/Fitting into context • CDSS: Protocol modifications basing on unique issues such as comorbidities 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 27

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 28

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 29

Discussion • Oncology EMR has requirements that might be different from other medical specialities – agreement with CORE Whitepaper, CICERO • Resource constraints and other difference in contexts also pose different requirements • Emphasis on structured and standardized data collection to allow reuse AMIA 2017 | amia. org 30

Discussion • Differences in finer details that are context specific • • • ID data e. g. SSN, RFID which participants aren’t familiar with Support fo clinical trials Billing • Caution with CDSS - need for user autonomy, ability to customize to fit with context AMIA 2017 | amia. org 31

Strength of the study • User centered approach • Participants with varying backgrounds • Multiple qualitative data collection methods AMIA 2017 | amia. org 32

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

Future steps • Prioritization of requirements • Implementing the requirements into a customized version of the EMR and testing them with the users • Assessment of other sociotechnical/organizational issues affecting implementation – e. g. readiness assessment AMIA 2017 | amia. org 34

Conclusion • Oncology has special requirements resulting from its complexity • Resource limitation and differences in organization of healthcare add extra constraints and thus extra requirements AMIA 2017 | amia. org 35

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

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Thank you! Email me at: jkabukye@gmail. com Linked. In: