From electronic health records to personal health apps, information technology (IT) has proliferated in the healthcare sector over the past few years. This has led to the increased availability of electronic data and the improved capability of clinical decision making. Most notably, consumer-facing applications—mobile health apps, wearable devices and sensors, and assistive technologies—have become prevalent, reshaping the landscape of patient education, health management, and public-health practices. It is therefore not surprising that designers and researchers are optimistic about the prospects of health IT. Many firmly believe these innovations represent a powerful source of disruption that will fundamentally change how healthcare is practiced.
Indeed, the penetration of health IT has occurred more quickly than many anticipated; its impact has been far-reaching. The increasing adoption of electronic health records systems not only provides the capability for recording and displaying patient information but also serves as the backbone for fueling quality-improvement initiatives and research with population-level data. With the increasing popularity of consumer-facing technologies, patients and the general public at large have an unprecedented opportunity to participate in managing their own health. They are now able to enter and track a large amount of data, both health and lifestyle, to quantify their everyday activities, stimulate and maintain healthier behavior, and contribute insights to overall public health. Moreover, new forms of interactive platforms, such as patient portals, online health communities, and physician-rating websites, have dramatically transformed the ways in which patients obtain information and share their wisdom.
All these sound great, but are we there yet? In reality, the increased availability of health IT does not always lead to improved access to information and improved patient health outcomes. Previous work has repeatedly demonstrated that many clinical IT systems fail to deliver on their promises; some are even associated with unintended adverse consequences that undermine the quality of care and pose escalated risks to patient safety . Similarly, a study has suggested that many personal-health apps also fall short of having a true impact on patient health. They are fun to play with, but their benefits are often short-lived .
Why is it so difficult to design for healthcare? In Elizabeth Mynatt's article introducing the Health Matters forum, she identified four aspects of healthcare that are critical to IT design: sensing, data, people, and eventual decisions . Her article poses many questions for us to answer. How do we sense our physical and emotional self? How do we analyze, visualize, and share healthcare data? Who needs to be involved in the health IT design process? How do we evaluate the impact of these decisions on stakeholders who may have diverse, or even conflicting, goals?
Another distinct challenge in designing for healthcare is the different cultures of the medical and the HCI communities. As Gillian Hayes eloquently laid out, at the intersection of design and healthcare, each community brings with it a distinct set of methods, values, and even norms of the validity of results . For example, exploratory studies with a handful of users are common in the field of HCI; however, tens if not hundreds of participants being carefully exposed to various study conditions following a randomized controlled trial design is usually considered the only acceptable approach to establishing the clinical effectiveness of a medical intervention. Here, innovation—which requires rapid prototyping, iterative evaluation, and agile adjustment—and clinical trials, in which any minor modification to the intervention might be considered a violation of the protocol, do not align well. The question then becomes: How can we produce useful insights for both sides and translate innovations generated through HCI research into interventions that lack unequivocally established evidence for clinical effectiveness? Or should we?
As the new editor of the Health Matters forum, I would like to share some of my perspectives on the opportunities and challenges in the field of health IT.
Healthcare differs from many other fields in that personal lives are deeply intertwined with professional service. This is especially true for individuals living with chronic conditions: The extended illness trajectory consists of repeated clinic visits, continuous regimes of medicine or physical therapy, and follow-up home care. A patient's daily activities could significantly affect medical treatment, and medical care in turn may have a profound impact on every aspect of the patient's everyday life. This interplay between professional and patient work thus makes the interaction between the two parties particularly important. While, in the past, healthcare providers had few opportunities to be closely involved in patients' day-to-day activities, this has changed with the recent rise of patient-facing applications that collect data 24/7 and telehealth applications that allow providers to intervene remotely.
As a field, we are keen to develop personal technologies that could enable, engage, and empower individuals, either healthy or ill, to better manage their own care. This enthusiasm grows naturally from HCI's enduring interest in personal and ubiquitous computing. Today in Google Play or the App Store, there are countless health apps available for download. However, a closer look suggests that only a few of these apps place an equal importance on both parties of the interaction—patients and their healthcare providers—in their design. While personal use and self-reflection are central to these systems, involving healthcare professionals as part of the ecosystem can greatly increase the value of these apps. Involving healthcare professionals can also help boost their adoption and sustained use. In our own research, we have found that provider buy-in is crucial for patient engagement. When self-care information is shared with and actively used by healthcare providers, patients are much more incentivized to keep generating that information.
On the flip side, the lack of healthcare-professional involvement also manifests in many apps being designed with an unvalidated assumption—namely, that healthcare professionals would welcome the opportunity to be able to monitor and act upon the personal health information collected and shared by patients. Is this really the case? Do healthcare professionals have the time, the bandwidth, or even the knowledge to make use of this kind of data? Would the slightest indication that healthcare professionals aren't interested cause patients to drop healthy behaviors and stop adhering to recommended practices? Who is liable for critical clinical decisions made based on the data from these apps? Without careful consideration of these questions, substantial investments in developing the apps could be wasted, patient enthusiasm for engaging in self-care could be diminished, and good design intentions could result in disastrous consequences.
In today's increasingly wired world, the cost of producing, sharing, and obtaining information has shrunk. For years we have been enjoying the benefits of reading product reviews online before making purchases and of comparing prices across many sellers in a matter of seconds. We often take this convenience for granted, but we give healthcare, an industry that touches the lives of all of us so deeply, has not changed much in the past two decades when it comes to making quality and pricing information transparent to customers. Rarely are we able to understand complex medical bills and determine whether or not each line item is appropriate. Most of us cannot even evaluate the quality of healthcare services we receive because we often do not have a basis of comparison, or we lack the knowledge to tell services apart. What's more, we are not able to shop freely across all provider options, as where we seek care is often limited by the terms of our insurance policies.
I do not intend this article to be a health-services research paper or one about health-policy debates. Instead, I will use my personal experience to illustrate how difficult it is for consumers of healthcare to navigate this complex information space.
In October 2014, in a routine ultrasound examination during my first pregnancy, my obstetrician found a large cyst on my left ovary. I was told that an operation was needed and that it must be performed by a gynecologic oncologist. While the odds were small, the cyst could be cancerous. I then spent a few stressful weeks learning about ovarian cysts and trying to find the best gynecologic oncologists in the area. I made dozens of pages of notes, using information from online health forums as well as from ratings websites like Yelp and Healthgrades.com. I also made multiple trips to different gynecologic oncologists' offices. Eventually, I decided to switch to another insurance plan so I would have more options. I then spent countless hours talking to representatives from different insurance companies.
I received the surgery in December 2014. By this time, I was confident the choice I made was the only sensible one. The cyst was successfully removed, along with my left ovary. Yet, a year later, I began to realize that I might not have exhausted all the options. This time, I was diagnosed with another cyst, on the right ovary. I panicked, obviously; however, my new gynecologist comforted me. He said that he had performed hundreds of cyst removals and that it was a simple outpatient surgery that wouldn't affect the function of the ovary. When I talked to him about the first surgery, he said, "Oncologists usually want to be on the safe side, but we prefer to save the ovary since you are still young."
Hearing this, I tried to suppress a distressing thought: If I had not gone to a gynecologic oncologist, I might still have my left ovary. Of course, it is possible that the other surgeon may well have saved my life. Whether it was the right decision still haunts me to this day. Reflecting on my experience, I also wonder why didn't I trust the oncologist who was initially referred to me. Maybe because he mentioned he had done only a few such surgeries? Or was it that his online reviews on healthgrades.com were not good enough? These were legitimate reasons for me to steer away, yet I had no real evidence that he could not do the surgery right.
My experience, compared with that of someone diagnosed with a terminal or life-altering disease, was nothing. However, I was repeatedly shocked by how vulnerable and helpless patients could be. Every piece of information took immense effort to assemble; every action took a long time to accomplish; and every decision took laborious pondering to reach. Make no mistake: The clinicians and staff I encountered were all very helpful and by no means tried to hide any information from me. However, after this experience, I came to realize that there is a severe information asymmetry between patients and healthcare providers. Even worse, this information asymmetry also exists between different medical specialties. This adds a great deal of complication to the already complex healthcare information space and may only be solved by innovations that think out of the box.
Facing such an opaque environment can be a huge barrier for patients who wish to be engaged and empowered in their own care, and for those of us who design technologies for patients. Nonetheless, technologies, if designed right, can also wake up healthcare consumers and help them realize that there is so much we can do to transform healthcare.
Despite the great potential, health IT is not a panacea. The inefficiency of the healthcare system is deeply rooted in matters that are nontechnological, and the asymmetry of information cannot be broken overnight. We need to be mindful about the organizational, social, cultural, regulatory, and political contexts in which technologies are situated. We also need to respect the limitations of medicine, acknowledging the fact that the biological and neurological mechanisms of our body and mind are far from fully understood. While the perspectives I offer here may sound pessimistic, identifying the problems we have yet to solve is the first step toward solving them. We are indeed at the edge of dramatic disruptions through innovations in IT systems that will shake the foundation of how healthcare operates. To accomplish this, we as HCI researchers need to work closely with medical professionals. We should step out of our comfort zone of developing health apps in silos to work with medical communities to take on grander challenges. I am confident that the tipping point is already on the horizon.
2. Bender J.L., Yue, R.Y., To, M.J., Deacken, L., and Jadad, A.R.A lot of action, but not in the right direction: Systematic review and content analysis of smartphone applications for the prevention, detection, and management of cancer. J Med Internet Res. 15, 12 (2013), e287.
Yunan Chen is an associate professor of informatics at the University of California, Irvine. Her research interests lie in the intersection of HCI, CSCW, and health informatics. In particular, she is interested in designing and evaluating interactive systems for clinical documentation, patient-provider interaction, and chronic care management. firstname.lastname@example.org
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