The always changing patient experience
It is often said that technological change increases at an exponential rate, and there are few areas where this is more true than in healthcare. The past few years have brought significant change. Digital products and services have moved beyond simple medical reference sites like category killer, Epocrates. Every area of healthcare is undergoing disruption. A new generation of digital healthcare solutions like Sherpaa and Vita Health Coach facilitate online consultation between clinicians and patients. Patients have previously unimaginable levels of access to their peers because of services like Patients Like Me. Personalized prescription-by-mail services like PillPak help simplify medication management and adherence and, in some cases, apps like BlueStar Diabetes have even moved into traditional medical channels, becoming prescribed medical solutions that require approval by the FDA.
While recently introduced products and services like these have brought about significant change to the patient experience, it is worth remembering that change is a constant. Taking a long view can provide some context for how the patient experience has changed in the past, and what might need to change in the future to meet the needs not just of the patients, but all participants of the system.
Yesterday and today
In 1900, nearly half of all deaths in the United States were caused by infectious disease—the leading causes being influenza and pneumonia, tuberculosis and gastrointestinal infections (brought on by bacteria or viruses). The average life expectancy of an adult in the US was 47. At the time, available healthcare services were designed to address acute problems like these and medical interventions, including surgery, typically happened in the home.
Hospitals were “mental wards and homes for the indigent, operated by nurses and nuns, treating only specific ethnic or religious groups.”¹
While people were accountable for their own health, lack of easy access to healthcare meant that they often felt powerless over their own well-being. If something happened they couldn’t handle on their own, they sought out experts with knowledge they could not hope to understand. Unfortunately, even those experts weren’t always well armed with the knowledge or technology necessary to improve the patient’s health.
The US healthcare delivery system was designed around these acute conditions and optimized to provide expert medical interventions that people couldn’t address on their own. The system worked, and it worked well. By the middle of the last century, if we got sick or injured we went to the doctor and were treated with an effective combination of the latest technology and a growing body of expert knowledge. The public’s mental model shifted from one of individual responsibility, powerlessness, and lack of access to one of physicians as unassailable experts; doctors as health heroes. Important medical advances brought about dramatic declines in deaths from acute causes, and breakthrough scientific discoveries, like vaccines and antibiotics, increased our quality of life significantly, even as we live longer and more productive lives.
Fast forward to today: Because of our success combating acute episodic illnesses, we’re living much longer than we did before as a population. Our healthcare delivery model has applied industrial age efficiency to the problem of acute episodic illness. Hospitals have changed from long-term care facilities for the incurable to the clean, modern temples of medical intervention we have today. Improved treatment, knowledge, and intervention have reduced deaths from all causes over 50 percent between 1900 and 2010.² But, like any wicked problem worth it’s salt, the ripple effects of our success have brought about unforeseen consequences.
From intervention to maintenance: The burden of chronic disease
Our increased life expectancy—from 47 to 78 years in the US—and the reduction in medically preventable deaths has caused a huge demographic shift. But with that shift has come a significant increase in the kind of chronic disease—like heart disease, diabetes and cancer—that manifests as we age. But, in the past, the US population simply wasn’t living long enough for chronic health problems to occur at the frequency they do today. Now, as we live longer lives, chronic conditions have risen to account for 47 percent of all US deaths. Chronic conditions present new challenges that our healthcare delivery system is not optimized for. The real challenge has moved from episodic intervention to the ongoing maintenance and disease management required to maintain healthy lives as we age.
“In many respects, our medical systems are best suited to diseases of the past, not those of the present or future.”³
Though changes are afoot, this need for continuous, outcome-oriented care has been hard to achieve with our intervention-focused healthcare system and its centralized, transactional operating model. Here are a few of the challenges that key participants in the system currently face and some ideas about what’s next.
Our healthcare system’s first line of defense, the primary care physician, feels the burden. Studies have shown that primary care physicians simply don’t have enough time to adequately treat patients with chronic disease. “Current practice guidelines for only ten chronic illnesses require more time than primary care physicians have available for patient care overall,” an estimated 10.5 hours per day per practicing primary care physician.⁴ Our healthcare system simply isn’t built for this. There aren’t enough doctors or hours in the day to meet the burden of chronic disease. What does this mean? It means that patients with chronic disease can’t rely on their physician the same way their grandmothers and grandfathers did. For physicians to be able to give each patient the best care they can, the healthcare delivery model needs to evolve.
How might design help primary care physicians achieve their goal of maximizing the value of every patient encounter?
One way is to improve efficiency by providing better tools. “The increasing amount of data recorded by patients, stored in EHRs, and captured from medical lab tests challenges the capacity of physicians to grasp an overview of the patient’s history while seeing specific data values that alert them to potential problems.”⁵ Allscripts is focused on addressing the issues of efficiency in the physician’s practice. Moment worked alongside the Allscripts UX team to design for needs around patient charts and commonly completed tasks as physicians moved about their practice. HCI pioneer Ben Schneiderman singled out our work on Allscripts Wand, the first iPad-based EMR client, saying “Designers who learn enough about medical decision making have the potential to enable clinicians to make more accurate and rapid decisions.”⁵
This shift away from acute, episodic care to ongoing support and disease management brings with it much higher demands of personal responsibility and expert medical knowledge on the part of the patient. This shift is accelerating another important trend, that of increasing patient empowerment. These dual trends mean that patients are taking control as the complex burden of care shifts from the healthcare system back to the home. Surveys suggest that patients with chronic conditions spend at least two hours per day on their health, engaging in activities ranging from medical appointments to tracking health data, from researching their condition to seeking holistic treatments, or simply maintaining an effective routine of exercise and healthy eating.⁶ For some patients, this means managing their chronic condition is equivalent to taking on a new a part-time job—a job on which their life may depend.
How might design improve patient experience in accessing and managing the increasingly complex burden of self-care?
Our ongoing collaboration with Memorial Sloan Kettering Cancer Center has created a number of digital products and services to help their patients. The first of those, MyMSK, empowers patients to better manage their own care, stay on top of a sometimes volatile care plan, and seamlessly communicate with their care team. We owe the success of this project to what Dr Joyce Lee calls a Patient-Centered Participatory Design process.⁷ We took patients (and clinicians) onboard as collaborators: involving them in patient intercepts, ideation and prioritization workshops and paper prototyping sessions with stakeholders from across the organization. We look forward to telling you about our later collaborations as they hit the market.
For the hospital, rising healthcare costs, the demand for revenue growth, and a newfound focus on improving the experience for the newly empowered patient has brought about new ways of working. Many treatments and procedures that historically required overnight stays are shifting from inpatient to outpatient delivery models. This maximizes the value of personnel, assets, and facilities by focusing the in-patient experience on high-intervention moments of a patient’s healthcare journey. In addition, studies show that outpatient care may enable a patient to more comfortably return to health. Even in situations as critical as surgical recovery and bone marrow transplantation, simply being in their own homes rather than in a hospital ward can have a positive effect.⁸ Shifting the time and effort required for non-acute situations outside their walls requires innovative new care delivery models to support patients through low-intervention moments of their healthcare journey. As a result, complex self-care regimens from rehabilitation exercises to wound care, self-injection, and symptom documentation are moving from the clinician to the patient.⁹
How might design help the hospital extend their reach and provide life-changing care to patients when and wherever they need it?
Welldoc’s mission is to use mobile technology to transform the treatment of chronic disease. After developing a clinically validated algorithm for diabetes care they asked Moment to help them create the first commercial version of their Bluestar Diabetes app. Recognizing the need to reduce barriers to collaboration, our team moved into the Baltimore-based startup’s kitchen, quickly iterating through possible interaction models and previewing them with Welldoc’s staff as we went. What we designed together would later be approved by the FDA and made available to endocrinologists as a newly prescribable treatment for patients with type 2 diabetes. BlueStar offers personalized, real-time guidance driven by a patient’s medication treatment plan and their blood glucose levels.
Tomorrow never knows
Though our healthcare system has changed for the better over the years, we are still learning the best ways to cope with the contemporary challenges and ongoing care that chronic conditions bring. New scientific discoveries and new technology can and will contribute to the change required for each of the participants above. The increasingly complex burden of care that we now face, however, is a wicked problem that an efficiency-focused, industrialized model of healthcare won’t solve on its own. The newly empowered patient has the starring role in the emerging model of healthcare. As designers, we need to meet them where they are and equip them with the tools to become their own health heroes, but we need to have empathy for every participant in the system.
“Designers need to think beyond the ‘user’ and their ‘needs’ to build empathy for every participant in the complex system of healthcare.”¹⁰
And as we consider the advent of ever-emerging technologies and their impact on this complex social system of healthcare, the task ahead for healthcare designers who want to make change is to imagine a positive future for all participants in the healthcare system.
- AI and intelligent agents will provide individualized algorithmic medical advice to patients at their most vulnerable moments.
- Voice interfaces and chat bots will become the angel on our shoulder, keeping us motivated and on track in our healthy living routines.
- Sensors and patient instrumentation will generate significant amounts of new patient monitoring data that clinicians will review and respond to in near real time.
- Virtual reality will help telemedicine become a legitimate clinical tool that attracts the interest needed to help remote treatment services achieve scale.
These are only guesses and while we can’t predict what the future will bring, we can design for the futures we would prefer. The internet is no longer simply an information resource to the newly empowered patient, nor is it something that only resides on screens. It is a place where patients can find community, or an accountable care team can facilitate real-time, personalized clinical advice where and when patients need it. The primary responsibility for our well-being is shifting back to us, the patients, only this time we will be better equipped with the tools, knowledge, and access we need to life a healthy and happy life with or without chronic disease.
¹How did America end up with this health care system?
²Mortality and Cause of Death, 1900 v. 2010
³The Burden of Disease and the Changing Task of Medicine
⁴Is There Time for Management of Patients With Chronic Diseases in Primary Care?
⁵Improving Healthcare with Interactive Visualization
⁶The Work Of Being A Chronic Patient And The Internet
⁷Patient-Centered Participatory Design
⁸New Clinic Enhances Adult Bone Marrow Transplant Service
⁹Patient, Heal Thyself
¹⁰Closing the distance between now and the future