Design of Customized Mobile Application for Patient Adherence to Oral Anticancer Medication Utilizing User-Centered Design
Oral anticancer medications (OAMs) can be challenging for patients due to their complex regimen. The goal of this research is to design a customized mobile application that can empower low health literacy patients taking OAMs and increase adherence and satisfaction with clinical care. A User-Centered Design approach was implemented by consulting with clinicians and patients at an early stage of development. Animations were incorporated to distill complex medical concepts and information. An iterative design process ensures that the tool is customized for patient engagement.
Oral anticancer medications (OAMs) enable oncology patients to benefit from life-saving treatments at home. Though convenient, orally-administered (i.e., tablets and capsules) anticancer medications place greater responsibility on the patient and/or caregiver than infusion-based cancer therapies traditionally administered in physician offices and clinics (Patel et al., 2013). It is often assumed erroneously that patients with cancer are unlikely to become non-adherent, and studies found their medication adherence rates could be as low as 16% (Patel et al., 2013; Ruddy et al., 2009). Positive therapeutic outcome is in direct correlation to adherence to OAMs (Hartigan, 2003). Since OAMs are usually self-administered by patients in their homes or other non-institutionalized settings, there is less direct clinician-patient interaction. Adequate patient education is essential to increase patients’ knowledge of their medication as well as self-management skills. Both behavioral and system-of-care factors contribute to non-adherence to cancer medications including patient-provider miscommunications, patient knowledge and beliefs about taking medication, forgetfulness, literacy level, lower socioeconomic status, side effects, and regimen complexity (Geynisman and Wickersham, 2013). An interdisciplinary team at the University of Illinois at Chicago (UIC) is developing a personalized mobile application (app) to address some of those factors.
Mobile Application for Patient Education
Mobile devices such as tablets and smart phones are becoming universal and often more widely utilized than desktop or laptop computers (Mirkovicet al., 2014). Electronic Health (eHealth) literacy is defined as “the ability of people to use emerging information and communications technologies to improve or enable health and health care” (Neter and Brainin, 2012). Tailoring content to make eHealth interventions more personally relevant promotes patient engagement and post-intervention behavioral changes among patients, including minority populations and those with low levels of education and computer experience (Jacobs et al., 2014; Mohr et al., 2014). Use of digital technology to deliver behavioral intervention information to patients allows greater patient access to effectively self-manage their medication while saving healthcare practitioner time (McDermott and While, 2013). A study of low-literacy patients using eHealth intervention showed a significant improvement in their knowledge of health information (Mackert and Love, 2009). Patients as consumers have great need for mobile health (mHealth) applications that can help with their medication adherence, as exemplified by the 106% increase of iOS mHealth apps available to the public from 2013 to 2015 (Aitken and Lyle, 2015). mHealth apps grew from 43,689 2013 to 90,088 in 2015, and these counts do not include mHealth apps for Android or other mobile platforms (Aitken and Lyle, 2015).
Visual Components in Patient Education
Communication between healthcare professionals and patients can be challenging. Clinicians tend to overuse medical jargon, and often may be unable to communicate equivalent terms in lay language understandable by patients (Houts et al., 2006). In oncology clinics, patients are emotionally stressed and often clinicians try to communicate more information than patients can manage. Even patients with a high literacy level can find it difficult to process the voluminous information provided to them, and spoken medical instruction averages only 14% recall rates (Houts et al., 2006). Time constraints during in-clinic visits also present a problem for clinicians to effectively deliver information (McDermott and While, 2013). From the instructional design field, it is known that pictorial information allows patients to form a mental model of the situation and may enhance comprehension of text (Kools et al., 2006). Appropriate visuals can facilitate connections between written text and mental images when learners reconstruct the information through visual association. When words are presented alone, learners must form their own mental images and associate those with the words they are reading or hearing, which is especially difficult for those with low literacy (Choi and Bakken, 2010). Having visuals accompanying verbal and/or written instructions can be an effective and culturally sensitive way to address literacy issues.
Utilization of Animation in Patient Education
The use of a mobile device in conjunction with animation could significantly improve patient understanding and clinician-patient communication (Schooley et al., 2015; Schnellinger et al., 2010). This was demonstrated to be especially effective in use with low health literacy populations since animations can overcome issues of literacy and are perceived as non-threatening when used to deliver medical information (George et al., 2013; Leiner et al., 2004). Animation has been found to be more effective than live-action video for conveying symbolic concepts since the creators have greater control over the look, timing and characterization of an animation (Champous, 2005; George et al., 2013). Often lower health literacy populations are more receptive to information disseminated via visual multimedia (Brock and Smith, 2007).
User Centered Design and Development
User centered design and development (UCDD) is a design philosophy in which users are placed at the center of the design process (Spector et al., 2014). Contact with target user populations is initiated early in development to identify possible functionality issues, need for new features, and design requirements; this is followed by an iterative design process (Ruland et al., 2003). The implementation of UCDD ensures that the application being designed is effective in fulfilling its function. There are hundreds of cancer apps, and each is an effort to promote behavior change or act as supportive interventions. However, most of these apps lack evidence for their effectiveness and safety (Bender et al., 2013). Significantly more mobile apps designed for healthcare professionals have scientifically valid information compared to those designed for patients, 96% versus 32% (Bender et al., 2013). This finding further supports the need for a cancer mobile application designed for patients that is evidence-based, grounded in theory, and utilizes UCDD.
Description of the Educational App
The tablet-based, personalized mobile educational module designed by our research team will engage patients in active learning about their medication and behaviors. The app includes information on individually-prescribed OAMs, patient scenarios on common barriers to medication adherence, and take-home messages on what patients should communicate to the clinician. We will test the usability of the intervention and examine whether it improves adherence to OAMs and patient satisfaction with the quality of care. Content was written at a 6th grade level to overcome possible literacy barriers and is visually rich. A personalized treatment calendar generated from the mobile application with reminders of when to take the medication will help with the issue of complex medication regimen. Customized text messages will be sent to patients over the course of the ongoing research to reinforce salient points from the modules. We designed the mobile app intervention to be completed within 20 minutes so that the patients can go through it in the clinic or oncology pharmacy waiting room or during counseling with clinicians.
Methods of Production
Pre-production scope assessments were conducted with clinicians (i.e., oncologist with board certification in internal medicine and hematology and two board-certified oncology pharmacists) to gain an understanding of the most important information they want their patients to remember. Based on these clinician interviews, we prepared a sitemap that indicated the education modules to include in the application (Figure 1). The functionalities of the mobile application include: 1) patient-centered educational tutorials on the specific OAM they are prescribed, including pictures of the OAM that the patient is prescribed and his or her specific dose and schedule; 2) patient scenario modules based on clinician-identified, common adherence barriers for patients; 3) customized medication calendar; and 4) sending tailored text messages via cell phone for reinforcement of take-home messages and follow-up appointments. The four barriers addressed in the patient scenario modules are:
Confusion regarding changes in dosing
The on-off schedule for some OAMs
Side effects, which have been known to cause patients to stop taking their OAM because they could not tolerate them
Forgetting to pick up refills in a timely manner.
Some of the OAMs needs to be taken with food, thus I created an animation that show the patients that they need to take their medication within 30 minutes of eating (Figure 5).
The concept of “on-off” medication schedule is challenging, since most medications have a daily administration regimen. We chose to show that the “off” days as rest days, which enable the patient to recover from the therapy.
The lead author experimented with the style of the animation and decided on iconic styles (Figure 6). The idea was to enable the patients to put themselves in the situation depicted without being distracted by the look of the animation. Previous studies have shown that people with lower health literacy level tend to get distracted by details in visuals (Houts et al., 2006).
Informal, semi-structured interviews were set up, where patient advocates evaluated the prototype of the three different UI as well as the four animations. They evaluated 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. Two oncology patients were interviewed for feedback on the preliminary design, each of whom had undergone therapy with OAMs. They are designated as Participant 1 (P1) and Participant 2 (P2).
Responses to the Patient Stories Module
This part of the research was focused on the initial phase of the design of the prototype and collecting target audience input to inform the design process. Another goal was to create a set of informative animations designed to empower patients and encourage them to communicate with their clinicians because one of the problems in adherence to OAM is patients deviate from the prescribed medication regimen without consulting their clinicians. This issue was confirmed during the interviews with the two patient advocates, where one said that patients, especially elderly patients, are very good at being “self-appointed physicians.” The overall response to the initial module was there were too many words, but the patient advocates identified with the scenarios presented and had experienced some of the issues themselves first hand.
When asked if a live footage should be used instead of animation, P1 said, “No, I don’t want to see live actors. Animation might be a fun way to present and reinforce information about the medication. Doctors intimidate a lot of people. Animation could be seen as friendly and approachable. Not so much cold and hard facts.” P1 did not like the more cutesy style of animation where the OAM pill has a face is wearing a cape to fight off cancer cells. The facial feature of the patients was perceived as a child by P1.
P1 also told us prior to viewing the animation, “Keep everything as basic as possible. Moreover, what does it mean by taking this medication on empty stomach? Does that mean before eating anything that morning? No breakfast? What timing is associated with it? Are a few bits sufficient? What is a meal? These things are not common knowledge for the general public.”
We evaluated the acceptability of the use of animation as a tool for communicating information about taking OAMs and if the educational modules resonated with the target audience. Feedback indicated that patients would respond positively to animations, which were seen as more fun and humorous than more realistic portrayals such as live-action. One of the participants felt that the short animation could help reinforce information and may be helpful in delivering information in a way that is not intimidating or scary. The size of the food and type of food portrayed in animations were initial points of contention. From the patient advocates, we learned that many oncology patients drink a smoothie or have light snacks instead of a large meal (because some patients cannot tolerate a full meal when they need to take OAMs). Thus, the depiction of the food in the animation should reflect what is more common in an oncology patient’s diet. The iconic character in the on-off cycle animation was preferred, especially when the patient character was changed to an androgynous figure without any facial features. This was seen as more relatable across different patient populations since gender, race, and age are not portrayed in the animation. In addition to the iconic animation, I had produced and presented a realistic 3D animation to explain the mechanism of tyrosine kinase inhibitors, however this animation was poorly received by one of the patients. She disliked the growing cancerous tumor, looked away and said it made her feel nauseous. The realistic portrayal in animation may not be the most desirable style or sensitive portrayal for this target audience and was eliminated in our module.
The participants perceived the four patient scenarios modules as being very helpful. This represented a form of “role modeling” as the basis for introducing the story to promote patient identification between the actual patient and the fictional patients in the scenarios. This type of representation has shown to be very effective in modifying behaviors (Leiner et al., 2004). The participants related to the patient scenarios very well and felt that they would be helpful in preparing the patients taking OAMs for some of the potential obstacles.
Both participants preferred the UI design concept 2 with its warm hue and more straightforward linear navigation. Simple, easy-to-understand visuals that focus on what they need to know and what buttons to push to navigate were perceived as more welcoming. The design of the UI in concept 1 with its mostly white background and blue graphic elements was seen as “cold and clinical” by the subjects. Another point brought up by the patients was that they did not wish to see too many words in the modules. This is in agreement with previous findings that mobile device should show limited content and with reduced word count (Mirkovic et al., 2014).
It is known that the need exists for the development of effective and efficient tools to help educate patients with chronic illnesses who have complex medication regimens, especially those with low literacy (Parmanto et al., 2013). Many people, including clinicians, already use mobile devices on a daily basis, including in their clinical practices (Mirkovic et al., 2014). What this paper contributes is the use of animation as part of a mobile education tool to enhance understanding of managing complex medication regimen among a minority patient population. The use of visual graphics renders drug information more accessible compared to long paragraphs.
The application will be coded into an actual app and hosted on Health Insurance Portability and Accountability (HIPAA)-compliant servers allowing tablets to access the patient’s electronic health record, to be deployed to an Android 10” tablet. The research team will be conducting a feasibility study and a randomized prospective pilot study at the UIC Oncology 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. The significance of this described application and proposed research on its usefulness is our hope to translate findings to improved patient care.
This project is sponsored by the McKesson Foundation and a research grant from the Vesalius Trust.
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Grace I-Hsuan Hsu, ALM, MS, is a Toronto-based biomedical visualization specialist. She has a B.Sc. in Biochemistry from the University of Waterloo and a master’s in Biotechnology from Harvard Extension School. At the time of this study, she earned her M.S. in Biomedical Visualization from the University of Illinois at Chicago (UIC). Her interests include patient education, data visualization and use of animation to communicate complex medical information. She is currently collaborating with medical professionals to create medical picture books for children among other patient engagement materials.
Stephanie Y. Crawford, Ph.D., MPH, is Associate Professor and Associate Head in the Department of Pharmacy Systems, Outcomes and Policy at the College of Pharmacy at UIC. Her research interests focus on social justice, access and disparities reduction in pharmacy care and services. This includes rural and inner-city access, low income populations, underserved minority populations, and the elderly. Related research interests include pharmacy systems evaluation (i.e., medication adherence, safe medication use, policy considerations) and associated patient-centered medication outcomes.
Gennaro Paolella graduated cum laude with a Bachelor of Science in the Teaching of Chemistry from UIC. He is currently a third-year Doctor of Pharmacy (Pharm.D.) student at the UIC College of Pharmacy. He also works as a pharmacy intern at the University of Chicago Medical Center and previously worked as a pharmacy intern employed at a large chain pharmacy. Recently, the United States Navy selected him to serve as a pharmacy officer upon graduation.
Sandra Cuellar, Pharm.D., BCOP, is a Clinical Assistant Professor in the Department of Pharmacy Practice at the University of Illinois at Chicago (UIC) College of Pharmacy. Dr. Cuellar is the coordinator and clinical assistant professor for oncology therapeutics. She completed a Pharmacy Practice Residency at University of Kentucky Chandler Medical Center. After residency, she completed a specialty oncology residency at MD Anderson Cancer Center in Houston, Texas. She is a clinical pharmacist in the Outpatient Cancer Center and the director of the oncology specialty residency program at UIC. Dr. Cuellar is an editor at large for Journal of Hematology Oncology Pharmacy and is involved in research, consulting and publications in the field of hematology/oncology.
Scott M. Wirth, PharmD, BCOP is a clinical pharmacist in Hematology/Oncology and Clinical Assistant Professor at the UIC College of Pharmacy. He completed his Post-Graduate Year residencies in Hematology/Oncology at the University of Kentucky. He has clinical and teaching experience in multiple hematology and oncology areas including leukemia/lymphoma, benign hematology, hematopoietic stem cell transplantation, and solid tumors. In his current clinical role he provides pharmacotherapy recommendations, medication management, patient support for education and medication adherence, and supportive care for oncology patients.
Neeta K. Venepalli, M.D., is an Assistant Professor of Medicine in the Division of Hematology/Oncology, she went to medical school at the University of North Carolina. Dr. Venepalli completed her Internal Medicine Residency at Northwestern Memorial Hospital in Chicago, IL and Hematology/Oncology training at Vanderbilt University in Nashville, TN. Dr. Venepalli's clinical practice focuses primarily on the care of patients with gastrointestinal cancers. Her research interests include experimental therapeutics and quality improvement. She is an active member in the American Society of Clinical Oncology.
Edward Wang, Ph.D., is a research associate professor in the Department of Biomedical and Health Information Sciences. Dr. Wang's research focuses on developing causal pathway predictive models for physiological and biomedical mechanism of physical activity and exercise. He is utilizing physiological and biomedical data to develop statistical algorithms that are able to improve the odds that a certain intervention will result in a more favorable outcome for patients with chronic conditions.
Donna Hughes, MA, is the founder of Hughes design | communications. She earned a graduate degree in graphic design from the Schule für Gestaltung in Basel, Switzerland. She is an assistant professor teaching graphic design in the Biomedical Visualization Department in the College of Applied Health Sciences at UIC. Her expertise and area of focus is communicating science and health care information through design. Ms. Hughes received the Award for Teaching Excellence from the University of Illinois at Chicago in 2005 and 2014.
Andy D. Boyd, M.D., is an assistant professor in the department of Biomedical and Health Information Sciences at UIC. After completing his medical degree, his postdoctoral work was in biomedical informatics at the University of Michigan. Dr. Boyd’s research focuses on data simplification to improve clinical outcomes engaging administrators, researchers and patients. He has designed patient engagement tablets apps in both cardiology and oncology to improve medication adherence through empowering the patients. He has also designed web interfaces to simplify the transition to ICD-10-CM for clinicians, administrators, and researchers.
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