The goal of our project is to create a secure, online registry where a user could enter in a patient’s identifier (either name or unique number) and it would generate a list of studies that the patient is involved in, or is planned to be involved in. It would also provide a way to manage patients that are enrolled or are eligible to be enrolled in various studies.
Currently the UNC Kidney Center has around 500 patients in their database. They are encountering issues regarding inconsistent and lost patient and study data. This new registry would provide easy and organization in terms of keeping studies and patients up to date and on schedule.
I am Dr. X, a provider. I have a busy clinic day and want to see which of my patients are enrolled in the Transition study, and what data is on file for them. I log into the Registry and type in the patient’s name and date of birth. A page pops up that has the Patient’s name and demographic information in front of me, and two buttons to click: “Studies” and “Surveys”. I click on “Studies” to get a list and description of all the studies the patient is enrolled in. I click “Surveys” to see which specific surveys this patient has completed. I also really want to know how one of my patient did on their last Transition Scale survey. I click on that survey and can click a button “Print report” to print a report of that survey.
I am Researcher Y, a research coordinator. I want to enroll a new patient in the study. Somewhere there is a button that says “New Patient”, and I get a form where I can enter in their basic information, as well as the patient’s answers to the surveys I administered. I also will specify when this patient needs a follow-up, in this case it is 6 months. 5.5. months later, I am alerted (via a calendar, email or alert when I log into the Registry) that there is a patient who is due a follow-up in two weeks.
I am Researcher Z, the statistics person getting ready for data analysis. I want to see what my sample size is, so I want to see all of the patients that are in the study. Somewhere there is a button that says “Patient List” and I get to see a table that has the name of the patient, their basic information, a list of studies they are enrolled in and a list of surveys they have completed. I want to be able to download this table into an excel sheet.
Camila is a clinician at the UNC Kidney Center. She is very focused on her work and has a busy schedule.
She only uses computers when it’s absolutely necessary, like for managing the patients on a medical program. Because of this, she has very little computer experience. Learning how to use new applications cannot be time-consuming, as time is a critical resource for her. Because of this, she gets very frustrated with unintuitive technology.
That’s why whenever I log in, I want the screen to be right where I need to be - that is, if I’m always logging in and going to the patient section, I don’t want to be redirected to a home screen instead of being brought to my patients page.
She likes animals, loves her husband, and they have two toddlers together, with whom she spends all her free time with.
Michael is a young researcher at the UNC Kidney Center. Because he uses the computer as a tool in his research projects, he is very experienced with all different kinds of application. Whenever he is stuck on new software, he consults the documentation, tutorial or FAQs.
Therefore, if he’s lost at how to do something like filtering out patients for the ones he’s searching for, a page that explains how he can do that would be extremely helpful.
Having experience as a TA, he also finds it easy to guide other people navigating computer software.
He is single, likes exercising and playing videogames in his gaming laptop.
John is a statistician at the UNC Kidney Center. He’s used to working with technology since he needs to use various programs and applications when working with all the data that the Kidney Center provides. However, as a statistician only, he doesn’t need the ability to edit or modify patient information, or even add new studies or surveys.
What would work best for John is something similar to that of a “read-only” mode, so that he can access and download patient, study, or survey data (possibly Excel) so he can use it for his work. He wouldn’t be able to accidentally modify information so that the database can stay accurate with data.
He is happily married and likes to fish in his downtime.
These users will not be able to edit patient/survey/study information, nor make new studies or surveys or add new patients, so if they click on “New Patient” or “New Study” or “New Survey”, the pop up that appears will tell them they do not have enough privileges to add new information to the database.
The clients and team talked about the kinds of people that would need to use this program, and what each kind of user would need to do. A brief overview of some functional specifications was also gone over. The group was also informed of a short presentation to be given on the coming Monday about the project.
Labor Day, no meeting.
The whole group met with the clients for the first time for introductions. The team was able to gain a clearer understanding of the project as well as note concerns that the client had, especially concerning security.
The team collectively decided on their roles, with Guilherme as Chief Developer, Tony Bo as Project Manager, and Stephanie Fenton as Client Manager and Editor. It also was confirmed that the group would need to complete HIPAA training because we are dealing with medical records.
The code is privately hosted on GitHub. Please request us access.
The unc-trx-api repository will host the actual code.
The unc-kr.github.io repository hosts this landing page.
Some documents are available on Google Drive. Please request us access.