Personalized Care for Young Cancer Patients
Healthcare Design of the Future, Fall 2014
The Aflac Cancer and Blood Disorders Center at Children’s Healthcare of Atlanta in Atlanta, GA renders high quality oncological care. However, interviews revealed that Aflac patients feel they have a long wait, that they are uninvolved in their care process, and that they feel lost in that process. Therefore, if patients are better accounted for, more active in their care process, and receive more personalized care, they will feel more valued and have a more positive experience.
Our team designed a mobile app, MyConcierge, for in-clinic use to help alleviate patients’ concerns while making it easier for care providers to communicate with and locate their patients. MyConcierge allows young cancer patients and families to navigate their treatments, personalize their care experience, and facilitate communication with care providers, while sharing patient location and data with care providers.
Because healthcare is a complex adaptive system, it is difficult to model and understand (Rouse, 2008). One approach to achieve improvements has been to institute Lean principles. ‘Lean’ is a process management philosophy that examines organizational processes from a customer perspective with the goal of limiting the use of resources to those processes that create value for the end customer. Lean manufacturing emphasizes increasing efficiency, decreasing waste, and using methods to decide what matters rather than accepting preexisting practices (Kimsey, 2010).
Technology, namely tablet computers, has shown to be another viable method for improving the outcomes within healthcare. Hospitals and healthcare institutions are using tablets more and more. They are used for patient monitoring, financials, inventory updates, notifications, communication, and managing tasks. Kaiser Permanente, The University of California San Francisco Medical Center, and Stanford Medical Center, among others, have started providing tablets to doctors, pharmacists, and administrative staff (Adil, 2012).
According to a report on “Healthcare IT Insights and Opportunities” by CompTIA, as cited in Adil (2012), tablets have been used in healthcare contexts for patient monitoring and data collection, dashboards and reports, appointment scheduling, and prescription communication. And according to a 2011 report on “The New Role of Technology in Consumer Health and Wellness” by the Consumer Electronics Association, as cited in Adil (2012), 38% of consumers are interested in using wireless devices to send health data to their physicians, 33% are interested in viewing their health records online, 32% are interested in video chatting with their doctor from home, 24% are interested in sharing information about their health with patients with the same condition, and 13% are interested in sharing information about their health on social networks.
Social media also serves a role in healthcare by effectively connecting patients to providers and creating an environment for patients to seek a second opinion. It increases social marketing and enhances the depth of interactions between patients and providers, thus improving health outcomes (Househ, 2014; Queen, 2014).
Patients are becoming more interested in sharing healthcare data, especially in a crowdsourced manner. Tablets have proven to be effective in the healthcare environment. Social media is both desired by patients and beneficial for their experience.
User-Centered Research: Methods
Research for this project was conducted as part of a course, Healthcare Design of the Future, at the Georgia Institute of Technology during the fall of 2014. Students were assigned to the following groups: interview, literature review (as described in the Background section), process flow, and behavior mapping using a tool developed by BBH Design. Groups was broken up into problem sub-groups: care coordination, short infusion, patient experience, and space use. Students formed different project teams to design solutions to the issues identified in this research. Our team focused on care coordination, which lead to designing MyConcierge. When referring to our research process and findings, therefore, we refer to research conducted by the class as a whole rather than the sole work of this paper’s authors.
The interview group was in charge of finding problems and potential solutions for those problems through face-to-face interviews with stakeholders at the Aflac Cancer and Blood Disorders Center. The interview group conducted sixteen semi-structured informal interviews with six different stakeholder types – 7 patients, 3 clinic nurses, 1 infusion nurse, 2 nurse practitioners, 2 doctors, and 1 nurse manager – at the Aflac Cancer and Blood Disorders Center.
The process followed the steps from Dillon, Madden, and Firtle (1994) to create, perform, and analyze interviews. From the problem sub-groups described above, the interview group identified focus areas: mediums of communication, areas of breakdown in communication, and transitional communication. Since only one week of interviews could be conducted, these interviews had to be broad and comprehensive (Galletta, 2013).
The process flow group compiled data initially through interviews with healthcare providers at the Aflac Cancer and Blood Disorders Center and recorded the data in Google Docs. This allowed the group to collect data on the broad issues in the processes of the 4 types of clinic visits. The process flow group interviewed Doctors, Nurses, Advanced Practitioners, and Triage Techs to gain insight from their perspectives on effectiveness of the patient flow in the clinic.
From there, the group carried out patient observations in 2-hour increments. During each observation, a student would follow a patient during their visit and recorded their data using a patient observation Google Doc. The patient’s personal information was omitted, while the specific rooms, and the time patients spent in the room or waiting for the next step in their appointment were recorded, the age range, and the type of visit were recorded. At each point, the students recorded the time a patient entered and exited an area of the clinic and what member of the care team was involved at each point.
Behavior Mapping Tool
The Behavior Mapping Tool was used to track categories and locations of persons in the Aflac Cancer and Blood Disorders Center at Children’s Healthcare of Atlanta. This tool consists of a website used on an iPad. The observer logged each person observed in the space they are in by placing a point on the map to represent the location of that person at a given time (e.g., waiting room, infusion room), and further ‘tagged’ them on a number of characteristics.
These tags included the category of person observed (e.g., registered nurse, doctor, visitor), their posture (e.g., sitting, standing), their current activity (e.g., charting, play), and if they wee talking to anyone (e.g., child in one of three age groups, other). Additional data included room situation (e.g., door closed, door open).
Team members made prescribed circuits of the Aflac floor. As observers, team members were instructed not to interfere with normal clinic activities and to not engage with patients or staff. Sessions were conducted on Thursday, October 16, and Friday, October 17, 2014, with team members assigned to 2-hour minimum blocks of time for observation.
User-Centered Research: Results
The interviews revealed three major topics: (1) Patients feel confused and lost in the care process. They are not always clear what their schedule consists of for a given visit, or will happen during their appointment. (2) Patients may feel like staff do not realize where they are located during appointments. (3) There is no uniform method of communication. Patients may have trouble getting in touch with staff.
A patient’s day is full of waiting. The typical total wait time for a clinic visit for most patients observed was over 30 minutes.
Behavior Mapping Tool
The Behavior Mapping Tool analysis revealed that children and visitors accompanying them are often found in the waiting room. Here, we use visitors next to children as a proxy categorization for adult family members and children as a proxy for patients and siblings.
The Aflac Cancer and Blood Disorders Center renders high quality oncological care, but Aflac patients feel they have a long wait, that they are uninvolved in their care process, and feel lost in the process. Care providers sometimes are unsure of where their patients are located, which can be confusing and stressful. There is no uniform method of communication, which can frustrate patients and lead to complications. The literature review showed that patients are interested in viewing and sharing health data online and that tablets are already in use in a variety of healthcare applications. The process flow analysis showed that the amount of wait time is equal to or greater than the time spent with a care provider. The behavior mapping tool analysis highlighted the large number of patients waiting in various parts of the clinic.
Patients often feel lost, unable to communicate, and confused about expectations. Using Axure, our team created a prototype mobile application called MyConcierge, optimized for Nexus 7 Android tablets, to address these issues. MyConcierge enables patients to personalize their care experience and facilitate communication with care providers while sharing patient location and data with care providers.
MyConcierge can communicate changes in the dynamic process of medicine and avoid unmet expectations. The tablet app keeps track of the patient’s location for the care provider, empowers the patient to be able to communicate preferences, maintains expectations for the patient’s care experience for that day, and unifies the communication method. It allows for more personalized patient-centered care by creating a medium to communicate between patients and care providers in the clinic in a HIPAA-compliant manner.
Through MyConcierge, patients can set preferences for care, such as what snack they would like or whether they would prefer to socialize or be in a private environment. Patients are also able to enjoy the benefits of social media through MyConcierge, which has proven to benefit outcomes. If patients are better accounted for, more active in their care process, and receive more personalized care, they may feel more valued and have a more positive experience.
MyConcierge Use Case
Jenny is 17 years old. She has leukemia and is coming for a short clinic visit to see her physician, Dr. Marseilles. It is a Monday morning and her father is at work, so she comes in alone. She walks up to the registration desk, gives her name and identifying information, and receives a tablet. She logs in to MyConcierge and checks her patient information in the system. She is then able to view an overview of the different stages of her appointment so she knows what to expect (Figure 1).
Soon, a nurse tech then comes to take her to her triage room. Jenny brings her tablet with her. As she enters the room, it automatically updates her to inform her where she is and what she should expect in in the triage room (Figure 2). The nurse tech sits her down and takes her vitals. They walk into the hall to get her height and weight. The nurse tech then walks Jenny to her clinic room.
As Jenny enters her clinic room, MyConcierge notifies her that she is in the Blue Exam Room and that there is an unexpected delay, but she should be seen by the nurse within 20 minutes (Figure 3). MyConcierge gives her a brief overview of what to expect during her time with her nurse.
Jenny’s nurse, Lisa, is having a busy day. Shortly after Jenny checked her status, Lisa messaged her through MyConcierge, letting her know that it might be a while. Jenny messages Lisa back to let her know that she is ready when Lisa is. She then decides to message her friend Samantha, who she met at the clinic during her last appointment, to see how she is doing (Figure 4).
While she is waiting, Jenny decides to update her visit preferences. She taps the menu button at the top of the screen to locate the Preferences page (Figure 5).
Once she reaches her Preferences page (Figure 6), Jenny chooses orange juice and graham crackers to snack on, and since she feels chilly, she notes that she would prefer a warmer room.
Next, she navigates to the journaling feature of MyConcierge (Figure 7). She writes about her experience at the Center, how she is feeling, and what she is looking forward to after her appointment.
After Jenny finishes journaling, she has the option of posting it on social media, sharing it with her nurses and friends, or keeping it private to review on MyConcierge. Jenny decides to connect to her Facebook account so that she can share her journal entry with her friends later. She navigates to the Settings page to do so (Figure 8).
Ten minutes later, Lisa is finally ready to see Jenny. In the whirlwind of her work, she is not able to remember which clinic room Jenny is in, so Lisa checks Epic and sees that she is in Blue Clinic Room. Thanks to MyConcierge, this information is automatically entered into Epic. Lisa comes to the room and greets Jenny.
The rest of the appointment follows the normal routine. Once Jenny’s lab work has been processed, MyConcierge updates to let her know that she will see her physician, Dr. Marseilles, in less than ten minutes, and tells her about what to expect during the visit (Figure 9). During the visit, Jenny uses MyConcierge to take notes while the physician and nurse talk to her about her leukemia treatment plan.
Once her physician leaves, MyConcierge transitions to the Checkout screen (Figure 10), which reminds her to return the tablet to the registration desk on her way out and asks if she would like to submit feedback about her visit to help monitor patient satisfaction and identify areas for improvement.
Jenny decides to submit feedback and fills out a brief survey about her experience while the memories are fresh in her mind (Figure 11).
Jenny returns her tablet on the way out. Her information is automatically pushed to MyChart so that she can always access the notes she took during her appointment.
Design Process & Decisions
Our team was interested in designing a system that could help patients and staff keep track of what is happening during an appointment as well as throughout the care process. Notes from an early brainstorm session are pictured below in Figure 12. Ultimately, we had to scope our project significantly due to time constraints and focused on the patient perspective rather than designing both patient and the staff sides for MyConcierge.
Since patients often feel lost and confused in the care process, we decided on a mobile app so that patients can access information about their appointment wherever they might be. Using Steven’s Service Design skills, we mapped out the app structure based on the steps of a clinic appointment and patient concerns that we identified from the Process Flow and Interview teams’ research (Figure 13).
As seen in the app screenshots in the Use Case section, the interface uses a minimalist design and calming colors to provide a comforting experience that provides detailed information while not feeling busy or overwhelming. The goal was to create a personalized, informative system that guides patients through appointments and gives them opportunities to communicate and share or to keep their experience private. While the system is designed primarily for older patients, it can also be used by family members or other caretakers when attending appointments for younger patients.
Since patients can access a variety of features in MyConcierge, it is important for patients to be able to see where they are in the appointment at-a-glance as well as providing a detailed view. The progress indicator at the top of the screen is omnipresent and informs patients which steps they have already accomplished and what is yet to come, specifying where they are currently and what the subsequent step will be.
Besides providing information about what to expect during a visit and when to expect it, MyConcierge is designed to personalize the experience by giving patients a variety of preferences to make their exam room more comfortable, from temperature to preferred snack, and even which nurse provider they would like to see. To help patients feel more connected to a variety of people, MyConcierge allows patients to message friends as well as care providers and to connect to social media. This helps patients feel connected and informed and provides a sense of agency as well as involvement in their own care process.
We thank the staff, patients, and families at the Aflac Cancer and Blood Disorders Center of Children’s Healthcare of Atlanta for sharing their time and experiences to help us understand the care process and what improvements could be made. We also thank our classmates from Fall 2014 Healthcare Design of the Future course at the Georgia Institute of Technology as well as the course’s instructors: Craig Zimring, Ashley Darcy-Mahoney, Bob Farrow, Jeremy Ackerman, and David Cowan. We also thank Julie Zook for her help with the behavior mapping tool.
[Untitled image of a 2013 Nexus 7 tablet]. Retrieved January 31, 2014, from http://g-ec2.images-amazon.com/images/G/01/electronics/asus/B00DVFLJDS_asus_image1_lg._V377724506_.jpg
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