Anna has Crohn’s disease, an inflammatory disorder that tends to affect the colon and small intestines. Ulcers develop and cause pain and difficulty in digestion. Anna became ill in college and has battled this excruciating disease for more than 15 years. It has taken a toll on her body. In 2008, while living in Los Angeles, three fistulas became compacted in her abdominal cavity. She spent four long weeks in a California hospital where doctors bounced ideas back and forth. One day she was told medication was the best way to treat her condition; the next day a surgeon approached her and suggested surgery. They never quite decided on a plan and, in the end, they recommended she change hospitals. During this time she was not able to eat or even drink water. Her parents took her home to Ohio where she began seeing experts at one of the best hospitals in the country. Her new team of doctors presented her with only one option: surgery to remove her colon.
After a long surgery and many days in the hospital, she was sent home and instructed to take care of her incision and to come back for a follow-up appointment. Anna was told to eat and drink what she wanted. Several months passed and she lived a pretty normal life. Four months after her surgery she ate a hamburger and it became lodged in her intestines, blocked by scar tissue. Having no knowledge of warning signs or complications Anna waited to go to the hospital until she became very sick, vomiting and unable to eat. When she arrived, the doctors found her intestines twisted. They waited for her intestines to shut down and untwist, but they fully anticipated another surgery. Anna began doing online research and found that her prestigious doctors had failed to prepare her for possible complications from her surgery. From personal experiences detailed in online journals she learned that she should have been eating small meals and drinking additional fluids, and in the short weeks after her surgery she should have been massaging her incision to break up scar tissue to avoid the kind of intestinal blockage that she now had.
Much of the anxiety Anna felt was unnecessary. Anna is now healthy, but her patient experience was extremely stressful. She lost time waiting for answers, and her health was compromised by lack of communication. Many patients are faced with this same sort of experience on a daily basis. It is with absolute certainty that each person will face illness in his or her lifetime, and, if not personally, we will experience it as a caregiver to a loved one. Patients face many obstacles, but their experience could be improved by designing communication tools for patients and physicians.
During the past century we have seen tremendous medical advancements, and human life expectancy has nearly doubled. With these grand steps forward, health communication has remained esoteric. Doctors’ appointments are rushed, confusing, and often overwhelming. When you add in the frustration of dealing with multiple doctors, pharmacies, hospitals, nurses, and treatment options, one can easily become baffled. Within such a context, how can patients digest, understand, and use complex and often intricate information?
Many patients search for clarification online, but acting as your own advocate can be extremely difficult. Google, WebMD, and online networks act as personal consultants, which has changed the face of medical communication. According to Jane Sarasohn-Kahn, a health economist:
For individuals facing illness whose support needs are not met by their traditional support network, the Internet allows them to find other people with similar health concerns and provides an opportunity to obtain support from a much larger network than would be possible in the face to face world. (2008: 160)
Patients are finding comfort in the experiences and wisdom of others who have been through the experience. Simply being told by a doctor is not enough; they want the details from someone who has first-hand experience. As we saw earlier, Anna used online research to understand and treat herself during her time in the hospital. This behavior is far from rare according to the polling of internet users by specialist company Pew Internet and others (Fox 2006: 8). Susannah Fox of Pew Internet further explains that patients are influenced by information they read online:
58% [of health seekers] say the information they found in their last search affected a decision about how to treat an illness or condition. 55% say the information changed their overall approach to maintaining their health or the health of someone they help take care of. 54% say the information lead them to ask a doctor new questions or to get a second opinion from another doctor. (Fox 2006: 15)
Some may worry that these online health searches could cause harm or have a negative impact. Their concern is warranted, as the larger the access to online information, the greater the possibility of being exposed to unreliable and less credible resources. According to a recent segment on NBC’s Nightly News with Brian Williams (Snyderman 2011), this has been a particular problem in terms of vaccines and the recent rise in parents refusing to vaccinate their children. Many parents have no memory of the implications of infectious diseases that plagued the twentieth century before many vaccines quite common today were available to the public. These parents are gathering information from Google and risking their children’s lives as well as the lives of people around them.
Fox found that only 15 percent of patients check the source and date of online health information, which means that 85 million Americans gathering health advice online do not consistently examine the information they gather (2006: 4). It is important to note the type of information they are gathering. The majority of patients are accessing user-generated health information online (Fox and Jones 2009). The bulk of this information is accumulated from various perspectives of medical thought—created by novices and health care professionals—whose date and origin have yet to be vetted.
This does not mean that all user-generated health content is dangerous or unreliable, but it does lack juried review and educated oversight. It is important to note that personal experience is extremely valuable and important. It has a strong place in health information. Knowing and hearing what another patient has encountered is reassuring and informative. It tells patients they are not alone or hopeless, providing confidence and inspiration. It also provides another level of information, detailed specifics and expectations for what lies ahead. Patient communities, such as DailyStrength.org, provide a place for patients to meet, share, receive support and help others.
Media literacy refers to the ability to understand and interpret media messages found on mediums which include television, newspapers, books, articles, blogs, web sites, portable devices, games, computers, cell phones, digital videos, photographs, illustrations, text messages, e-mail and the printed word. (Lane and Rinnert 2009: 1)
This can be seen as an information design problem because it involves more than just managing complex information: “to present the right information to the right people at the right time in the most effective and efficient form” (Horn 2000: 16).
Despite the complex web of information that a patient will encounter in one simple Google search, there are plenty of data proving that patients are finding online health information to be valuable; however, currently much of the burden of finding good quality information is placed on patients. They must deal with their own medical crises as well as negotiate and judge what information they should use and how to manage it. We find ourselves in the midst of an elaborate design problem framed by complicated information structures, participatory culture, and health literacy.
Our research question: How can designers respond to current medical communication problems and provide a better patient experience, reduce information anxiety, and improve comprehensive health outcomes?
Development: A concept map, user personas, and a visual prototype provided clarity allowing us to find connections, relationships and to see patterns from the data we had collected, and the secondary research we had gathered.
The primary research used qualitative measures to reveal personal experiences through a web-based survey that was intended to collect information on patient experiences while under the care of a physician. Our goals were to
A call for participants was posted on several social networking sites as well as an online support group, DailyStrength.com. Participants were contacted through the online system, and their personal contact information was never collected. They were able to log in with complete anonymity.
In the end 87 adults participated on the online questionnaire, aged between 25 and 64. They answered 39 questions regarding patient experience, expectations, and technology exposure. Participants had to be adults who spoke English, over 18 years old, and a patient within the last seven years. Gender and ethnicity were not determining factors for inclusion in the study.
The questionnaire the participants answered consisted of both fill-in-the-blank and multiple choice questions. It was formative as it gained insight into the lives of patients, their experiences, and expectations.
The beginning of our survey asked the patient about general demographic information, technology access, and media. Starting from Question 16 they were asked about their specific patient experience. The most revealing answers were found in the replies to Question 17: “What has been negative about your experience?” Thirty-nine percent of participants cited communication issues with medical professionals, which included difficulty understanding, the use of medical jargon, and uncertainty in prognosis. Other answers included poor experience, bad bedside manner, loss of time, issues with billing or insurance, and problems transferring medical files. Only 5 percent of respondents said there was nothing negative about their experience (Figure 11.1).
Returning to the original first hypothesis, I found that patients tend to understand their medical protocol, but they often have questions nonetheless. The questionnaire confirmed that patients and caregivers use the phone as their main mode of communicating with their doctor. Question 36 asked patients: “When I have a question I usually: a. Call my doctor’s office and speak with a nurse; b. Schedule an appointment with my doctor; c. Search online for answers; d. Ignore my problem and move on; or e. Email my question to my doctor or nurse.” Fifty-one percent answered that they called their doctor’s office and spoke with a nurse, 27 percent searched for answers online, and only 5 percent emailed their doctor directly (Figure 11.2). One frustrated patient:
Neither my RE [reproductive endocrinologist] nor my OB [obstetrician] or their staff, do any communicating online or via email, and that’s my preferred method of communication in almost every circumstance. It seems like calling in and having to talk to someone, leave a message, wait for a return call, etc. is very cumbersome and old fashioned.
In relation to the second hypothesis, when patients were asked, “Did you ever search online for supplemental information?”, 91 percent replied “yes,” and only 9 percent said “no.” Those that responded “yes” often elaborated lengthily, but generally their primary reason was that they needed more information or clarification after meeting with their doctor. Some patients consulted WebMD and others looked at online support groups. Those patients that did not look for supplemental information responded that they were overwhelmed with their situation, or that they did not feel a website would provide assistance. When asked if they relied on the information obtained online, the group was split: 53 percent responded “yes,” and 47 percent said “no.” When asked “How often do you use online resources regarding your medical prognosis and/or treatment?” only 9 percent replied “never.” In contrast, 47 percent replied “less than once a month,” and 44 percent replied that they searched online “between once a month and daily.”
Questions related to hypothesis 3 brought about the following responses: When asked “Are you part of a support group?” only 27 percent responded “yes,” while 73 percent said “no.” The majority of respondents that participated in a support group experienced that as positive. One patient stated, “It has been extremely helpful to me just knowing that there really are people going through the same thing that I’m going through. People who can actually give me some advise and who really understand everything. It has brought peace of mind to me and it has also made it possible for me to share my experience and offer help to others! Another patient said: “Absolutely. The support and understanding (and advice) that I receive from other women in the same/similar situation has been invaluable.”
Following our questionnaire I employed three visual explorations: concept mapping, persona building and prototyping. Each of these approaches helped to understand the patient experience as well as model the end product.
By developing a concept map, I was able to visually map the patient experience with the data we had collected (see Figure 11.3). The concept map placed all of the research in one view, giving a micro and holistic perspective on the project.
In order to define the project scope we developed two personas: fictional models of potential end–users that represent the target audience. Two types of patients were identified: those facing long-term, chronic care, and those facing short-term or elective care. Both personas have a consumerist view of healthcare, and were crafted to reflect the results of the previous survey. Our application will not hinder a patient with a paternalistic view, but it does not necessarily meet their needs and desires.
The first persona is Beth, who has Crohn’s disease and will need long-term care and chronic pain management for the rest of her life. She is young and active, 36 years old. She has one child and is a strong member in her online support group. Beth is about to have surgery, and is preparing for the recovery and experience of losing her colon. She monitors her health carefully and wants feedback and communication from her physician. She is apprehensive about the surgery and needs confirmation that she is making the right decision. She frequently visits websites like jpouch.net to read blogs from patients just like her. She desires to understand what will happen in the weeks ahead as she faces surgery and recovers.
Our second persona, Emma, is a fertility patient and will need short-term, elective care. She suffers from a genetic disorder that keeps her from getting pregnant. Her care is not covered by insurance and is considered elective because her infertility is not a life-threatening risk. Emma and her husband have been trying to conceive for many years and now they are moving to the most extreme fertility treatment, in vitro fertilization (IVF). A significant portion of their savings is at risk, and, with only a 40 percent chance for success with each cycle, communication and understanding are key. Emma must administer her own injectable medication. Comprehending instructions and following specific timing are critical, and if they are not carefully followed then US$12,000 could be wasted. Emma is nervous but enjoys hearing about successful IVF pregnancies. She does not discuss her fertility treatments with friends, due to the embarrassing nature of them. Emma frequently feels alone and secluded, and therefore welcomes the chance to communicate with others online.
Developing these two different patient personas allowed us to understand specific communication and education needs for patients with varying short-term and long-term medical experiences. We subsequently used these personas to revise and refine our concept map, and apply it more specifically to their narratives.
Based on the outcomes of the initial two explorations, we developed a prototype for an iPad application called The Patient Advocate. The application is intended to connect patients with their doctors and medical providers through visual and communicative tools that allow them to engage with their medical information, and it also provides a social networking space for patients.
The design phase of the project included the development of two artefacts: an interactive prototype for usability testing and an animated walk-through that describes the user pathway through the system. By this time in the project I had developed a relationship with Akron Children’s Hospital, working specifically with the Lewis H. Walker, MD, Cystic Fibrosis Center. As I worked with the medical professionals together we found that Cystic Fibrosis (CF) patients had much to gain from a system like The Patient Advocate, and that through this new relation we would also have access to more realistic data and “soft information” to model our prototype after.
Accordingly, in the animated demonstration we follow a Cystic Fibrosis patient, Hannah, through the system to see how she may use the application. The following text aligns with the demo, explains the patient’s experience within the application, and describes the core functionality within the context of use.
We see Hannah enter The Patient Advocate application using her iPad (to see the full demo visit
). She enters a secure social network and database using her email and password. Once in the system Hannah visits the Patient Profile and Health Log (see Figure 11.4). On the left-hand corner we see a gray box containing her basic personal information shared to her network, and the rest of the screen is occupied by a daily health log. Each section can be expanded to customize and reveal more complex sets of data. This customized screen allows Hannah to quickly track data that will keep her aware of her body and changes as to how she’s feeling. It can be tailored to each patient, their health and wellbeing, allowing the medical team to assign the key targets to be monitored. Warnings and alerts can be pushed to Hannah by her physician and caregivers if her health log shows problems—for instance if her weight has dropped, and if her use of her rescue inhaler has increased she may get a text message to schedule an appointment with her doctor.
Next we see Hannah visit the Community Center (see Figure 11.5). Here she can read recent discussions, articles, and content that her community members have posted. Hannah can participate as well. She may ask questions, share articles, advice, and videos. She can communicate through text-based chatting tools or join into a Google Hangout video-chat with her community. Hannah has contacts in three separate categories:
Family and Friends: family and friends the patient has selected to be part of her health network. This would usually be a smaller group of people close to her with access to information she chooses to share.
Next Hannah visits the Patient Health Tracking and Chart. This screen has three different sections: the first half is the patient self-monitoring, charted over time. Here Hannah’s daily inputs are displayed, giving her feedback and a holistic view of her health. The next section shows Hannah’s health goals, as established with her medical team, and efforts toward reaching these goals. She can also access instructions from her medical team from this interface. The last section is Hannah’s medical chart. Here she can view her most recent test results, blood work, exams, and doctors’ notes.
Finally we see Hannah visit the Education Center, an area of the application that provides an overview of her diagnosis, the top online resources, information on her medication and treatments, and any additional information her medical team would provide. This content is specifically curated by a research nurse in her doctor’s office, customizing the information and thereby making it relevant to Hannah. When her medication and treatment list is updated, this screen will be refreshed with the latest information on dosage, warnings, and background information on the medication and/ or treatment.
The findings from the surveys, interviews, and visual explorations hint at what may be possible when the health industry employs the use of innovative technology such as the iPad along with a sophisticated application that could handle complex data sharing and communication, although at this point in the project a final conclusion would be premature. The Patient Advocate is a work in progress, and several more steps remain in defining the application.
Moving forward I will be working with Dr. Joel Hughes, a psychology professor at Kent State University with extensive research in health literacy, in patient self-management, and social support, and Dr. Anthony Sterns, CEO of iRx reminder. Together we will be developing the back-end database, and conducting usability pilot tests with real patients while seeking grant funding. So far I have completed two such sets of usability tests with CF patients at Akron Children’s Hospital and have found an overwhelming interest and need for an application of this magnitude.
Many patients and their parents have expressed that they feel a lack of social connection with other patients, and experience much difficulty in communicating with their medical team. Doctors have expressed an interest in the medication and diet adherence functionality and how it could help their patients stick to their advised medical protocol. Children living with CF are poor self-managers. According to Dr. Nathan Kraynack, a physician at the Center for Pediatric Pulmonary Medicine at Cleveland Clinic, many adolescents and teen CF patients struggle with adherence to treatments and medications. This behavior places these patients at risk of a shortened life span or of needing a lung transplant prematurely.
Apple is currently looking for medical- and health-related iPad applications, because they carry great promise. Currently the iPad is being used by doctors as a digital notepad or for medical imaging, but primarily its use has been as a tool for doctors, not patients. It has also been used to help entertain patients. In 2010 Stanford Hospital and Clinics used iPads in place of televisions and laptops as a way to enhance patient experience during their hospital stay, to pass time as they waited in a recovery area (Stanford Hospital and Clinics, 2010).
In these contexts the Patient Advocate is an innovative concept because it seeks to improve all aspects of patient experience, from communication and sharing to understanding their own health and wellbeing. There are a number of healthcare organization, healthcare professional, and healthcare consumer needs that create significant market demand for the Patient Advocate application. There is a growing demand for mobile-health (mHealth) applications and technologies that support patients and healthcare providers on the go, especially for patients with chronic, life-threatening illness. Patients are obtaining health information online, and often sharing it with one another. Patients encounter communication problems on a daily basis that include: understanding their health information, accessing their personal records, and managing and sharing their health updates with doctors, nurses, and caregivers on a regular basis. Patients often learn after-the-fact and respond to health needs in a defensive manner. After much research and testing my collaborators and I continue to believe that by putting more control and credible information in the hands of patients, better health outcomes may be obtained while creating a less stressful patient experience.