Written on December 8, 2016 by Grace I-Hsuan Hsu
Ensuring patients take their medications as prescribed by their doctors is an ongoing issue across the world. That’s even the case for patients with life-threatening diseases like cancer. Patients cite a number of reasons for failing to take oral anticancer medications (OAM), including confusion around when and how to take their pills. This is something I’ve witnessed firsthand.
As part of a master’s research project at the University of Illinois at Chicago, I shadowed an oncology pharmacist and pharmacy student as they gave medication instructions to a patient who was diagnosed with cancer for the second time.
The patient had experience taking OAMs before, but that didn’t make it any easier for him to retain all the directions that come with these types of medications. For example, the chemotherapy drug prescribed to this particular patient comes in 150 mg and 500 mg pills. To get the correct dosage, he had to do some math to get the 1800 milligrams he needs per day. The meds must also be taken for two full weeks every 21 days. Discussion about side effects is also part of the consultation.
Even with a background in pharmaceutical sciences, I would not have remembered the verbal instructions had I not written and doodled them down in my sketchbook. For OAMs there is a greater responsibility for the patients to make sure that they follow their prescriptions precisely (in contrast to IV chemotherapy). For effective self-care, patients need to be engaged and well informed.
Developing a Solution to OAM Non-Adherence Using User-Centered Design
An interdisciplinary team at the University of Illinois at Chicago (UIC) has developed a personalized mobile app to address some of the reasons cancer patients fail to take their medications correctly. The goal of this project was to design a customized mobile app to empower patients taking OAMs and serve as a visual aid in facilitating communication between patients and their health care team.
My role was to incorporate user-centered design to create the user interface (UI) of the app, distill medical instructions in a visual way to engage the patients, and interview clinicians to determine what problems or challenges they are having and how we can overcome those challenges and deliver an effective educational tool.
My research found that cancer patients have a difficult time processing all of the information communicated to them by physicians because there’s so much to retain and they are already in a vulnerable, emotional state. Time constraints during in-clinic visits also present problems for clinicians to effectively deliver intervention details to patients.
My team decided to incorporate pictures and animation into the mobile app to help patients more easily understand the complex medical instructions they must follow. Studies have shown that pictures help patients form a mental model of a situation and enhance comprehension of text. It’s also been determined that use of a mobile device, in conjunction with animation has been shown to significantly improve patient understanding and clinician-patient communication, especially in low health literacy populations.
The app my team created is designed so patients can utilize it in the oncology pharmacy waiting room or during counseling with clinicians. The functionalities of the mobile app include:
- Patient-centered educational tutorials that include pictures of the specific OAMs prescribed along with information on the specific dosage and schedule.
- Patient scenario modules that allow patients to role play what they are supposed to do in certain medical situations.
- Customized medication calendar.
- Tailored text messages for reinforcement of take-home instructions and follow-up appointments.
- Personalized data are taken from specific patient’s electronic health record to ensure the information is customized.
How Did Patients Respond?
We gave patients the opportunity to evaluate prototypes of the different user interfaces UI) as well as the animations. They gave us their opinions on the icons used, the colors, font type, font size, and the layout and graphic elements in each design as well as the style of the animations.
We found that the patient scenario modules allowed patients to identify with the fictional patients in the scenarios, and were effective in modifying behaviors. By involving patients early in the design and development process, we invited them to be an integral part of their own cancer treatment team.
Current State of the Project
The application is now coded and hosted on Health Insurance Portability and Accountability (HIPAA)-compliant servers allowing tablets to access patient electronic health records. The research team is conducting a feasibility study at the UIC Cancer Center to evaluate this mobile education tool and how it will contribute to patients’ adherence to their OAMs and our understanding of the function served by visual aids in facilitating communication between patients and their health care team. Jump Simulation could help test the application in a Phase II study, pending grant funding.
Written on September 15, 2016 by Don Halpin
Watch Out for Hidden Bias.
In healthcare, we frequently create and implement new tools, technologies, and processes to make patient care safer and more efficient and effective. But the creation of such improvements is only half the equation for success. A piece of equipment or software may be perfectly designed to overcome an existing challenge, but its success depends on how people interact with it.
James Schreiner, a PHD graduate from University of Illinois College of Engineering at Urbana-Champaign and recipient of Jump ARCHES funding, examined the human choices and judgment used with a patient re-admittance risk assessment tool OSF HealthCare developed for its patient case managers.
Case managers create individual patient discharge plans in order to maximize the patient’s recovery and prevent hospital readmission. Some patients require detailed communication plans, technology support, and follow-up from medical staff. Others can go home with minimal to no instructions or follow-up based on the factors affecting the complexity of their case. The patient re-admittance tool used by OSF aggregates factors such as the patient’s age, history, home support structure, and reason for hospital stay and presents them to the case manager in an organized and prioritized manner.
Creating Unintended Bias
The patient discharge planning tool was designed to complement, rather than replace, the case manager’s judgment. However, Schreiner’s research found there was a correlation between case managers’ level of experience and their likelihood to accept discharge plan recommendations from the tool. Inexperienced case managers relied heavily on the tool, while more senior case managers used it as a supplement to their experience and judgment. In other words, inexperienced managers were biasing their plans according to the tools recommendations and were considerably less likely to deviate from it, regardless of the case specifics. This unintended bias could cause a less optimal assessment in the design of a patient’s discharge.
Countering the Bias
To counter this bias, Schreiner suggests using known cognitive psychology and organizational dynamic methods to help de-bias the use of these tools. For example, just informing case managers that the tool could, and probably would, subconsciously bias them actually starts to de-bias them.
OSF is currently assessing the use of simulations for addressing the issues Schreiner identified. Simulation is a proven and useful education platform to train case managers. Its use would allow learners to experience the technology in a safe environment where we can vary the situations case managers will encounter and provide them feedback on their decision-making, helping them gain experience and develop judgment.
Simulation also allows for group learning, which utilizes the collective knowledge and experiences of the learners and facilitators to enhance the overall understanding and best practices of technology utilization.
Ultimately, all decision-support technologies we employ can unintentionally bias the user. Training, especially in realistic simulations, can help provide the mental model needed to employ better judgment for using, rather than relying on, new technologies.
Written on June 8, 2016 by Kimberly Cooley
The advancement of healthcare information technology solutions has meant hospitals and providers no longer have to rely on paper charts to track patient information. Health records are now conveniently placed in electronic databases. However, there are limitations to the way data is collected, meaning physicians sometimes have a difficult time extracting pertinent information needed to treat their patients. This is especially problematic for doctors caring for those with chronic diseases in specialty practices. Many times a patient’s complete clinical picture is needed, but physicians have to search through multiple encounters in the electronic health record (EHR) to review their patient’s history.
This was the case when the Illinois Neurological Institute (INI) Multiple Sclerosis (MS) Center implemented an EHR system in 2011. The system was unable to collectively provide information such as the type of MS, date of diagnosis, medication history, and relapse information in one location that could be easily retrieved later. I, as a research coordinator, and the INI MS physicians and staff saw this as a major gap in data extraction for the more than 800 MS patients treated at the center each year.
We teamed up with OSF Saint Francis Medical Center Healthcare Analytics Department and the Center for Outcomes Research at University of Illinois College of Medicine at Peoria to develop an MS Flowsheet Registry that could be integrated into our EHR so that this individualized MS information could be viewed in one place.
It’s based on a flowsheet I established in 2009 to support patient care and research when the MS Center was still using paper patient medical records. We believe the flowsheet has the potential to improve patient care and staff satisfaction, reduce costs for patients and the MS Center, and increase local research opportunities. A two-year study is underway to prove our hypothesis.
The MS Flowsheet Study
One of the challenges the MS Center faces in treating patients is getting medications to patients immediately after a physician prescribes them. This is due to the complicated insurance authorization process. Staff has to find and collect medical information for the insurance forms, which can be spread out over a number of previous patient encounter records. Patients had to sometimes wait for 30-45 days to obtain insurance authorization for their prescriptions before the implementation of the MS Flowsheet Registry.
It’s our hypothesis that the MS flowsheet will expedite the time patients are able to get access to their medications, which could decrease relapse rates and disability progression. Our study will compare how long it takes to receive insurance authorization before and after the MS Flowsheet was implemented. It will look at relapse and MS-related hospitalization rates before and after as well.
We believe the MS flowsheet will improve patient encounters and staff satisfaction. Staff and physicians won’t have to spend as much time on manual chart review, allowing for more time with patients. We also predict we’ll be able to more quickly identify potential sponsored clinical trial participants, and it will open the door to any number of investigator-initiated local research opportunities in Peoria.
If we are successful, we believe this tool will impress and potentially bring new MS providers to Peoria due to the efficiency of the database and our ability to conduct research. The flowsheet could also be applied to other specialty practices within OSF HealthCare, such as cardiology, rheumatology, and pulmonology.
The Importance of Speaking Up
It goes to show you don’t have to be a CEO, principal investigator, or physician to have an idea. It’s the people down in the trenches who know what is and isn’t working. If you see something that’s hindering progress, find people who believe in your story and are passionate about what you are trying to do then keep going for it.
I would like to thank the Central Illinois MS Council for funding the research study associated with the MS Flowsheet development. The Central Illinois MS Council & MS Clinic Fund is a not-for-profit volunteer organization dedicated to transforming healthcare for MS patients and their families in Central Illinois.