When Dr. Ken Ong, now chief medical information officer (CMIO) for New York Hospital Queens, began his medical career, he was treating infectious diseases. It was the outbreak of the AIDS epidemic and, he states flatly, "We knew nothing." Only by working closely with patients could Ong and his colleagues begin to determine which drugs made AIDS a largely treatable condition.
Years later, patient engagement has emerged as a key strategy for not just treating chronic conditions but also providing better, more collaborative and more efficient healthcare. This is especially true of healthcare systems aiming to pursue models of coordinated care such as the accountable care organization (ACO) in an effort to eschew what many consider an outdated, expensive fee-for-service model.
A range of innovations, from wearable tech and medical devices to patient portals and personal health records, appear poised to improve the patient experience by streamlining administrative tasks and providing physicians with data to enhance the care process.
For such technology to have an impact, though, patients must use it, physicians must be accept it and healthcare organizations must integrate it — as well as the basic principles of patient engagement — into their strategic plans.
Patient Engagement a Necessary, but Difficult, Sell
If you think of patients as customers, the healthcare industry is essentially backwards. Banks, retailers, utilities and other firms constantly reach out to their customers with deals, tips and other forms of communication. Healthcare providers,however, wait for patients to reach out to them. Many patients don't reach out until they need urgent care — which is the most costly and, in many cases, the least effective form of care.
Regulatory efforts requiring providers to demonstrate that 5 percent of patients are viewing, downloading or transmitting electronic versions of their records, then, should be an easy sell, says Norm Chapin, CMIO and medical director for Columbia Memorial Hospital. It negates the need to take time off work, get in the car, drive to the doctor's office and make a co-pay for what often amounts to a one-minute conversation with a physician.
Unfortunately, providers often struggle to justify the expenditure, says Chapin, speaking with Ong and other at the Institute for Health Technology Transformation's New York Health IT Summit. The return on investment for health IT projects is rarely as advertised; as Chapin says his CEO points out, staffing levels at Columbia Memorial remain the same, and people still print paper records. "It's a challenging paradigm shift," he says.
As a result, says Joanne Rohde, CEO of Axial Exchange, which makes engagement applications for patients as well as providers, it's easy for organizations to give in to the temptation to expose a "vanilla" patient portal, one that does little more than let patients book appointments and refill prescriptions and that's implemented with little to no clinical or patient input. In such situations, it's no surprise that patient portal adoption remains as low as 2 percent.
Better Patient Engagement Needs Board, Executive Buy-in
The report, A Leadership Resource for Patient and Family Engagement Strategies, points to several benefits of patient engagement. Some, such as better outcomes and improved compliance with patient engagement regulatory reporting requirements, come as no surprise. Others drive deeper: Better adherence to recommended treatment regimens — after hip surgery, say — which reduces complications and re-hospitalizations, which reduces both institutional and individual care costs and improves patient satisfaction to boot.
Physicians struggle to communicate with patients, even with the aid of electronic health record (EHR) software, and don't know how to follow through once a connection has been made.
Healthcare organizations face complicated patient data security requirements and often err on the side of not releasing information. On top of that, patient portals and clinical information systems can be costly, and at many intuitions patients remain a low priority with senior leadership.
Patients, already intimidated by the healthcare system, often avoid engagement efforts — and when they do participate, interest wanes over time.
Healthcare organizations that want to improve patient engagement need to take a methodical approach, the report continues:
First create, and then reinforce, a vision statement for patient engagement.
Hold forums with staff, patients and their families to learn where services are lacking and accordingly train staff at all levels on the need to integrate patient perspective into "all aspects of hospital planning, implementation and evaluation of programs and services."
Develop plans that encourage individual employees, care teams, the entire organization and the community at large to prioritize and achieve patient engagement goals.
Monitor progress, making sure senior leadership receives easy-to-read reports.
Finally, providing ongoing support, in part through resources that are made available to staff, patients and their families. (Don't forget about non-English speakers.)
Technology Helps Patients Track, Take Control of Their Health
For decades, Rohde says, healthcare has used the annual US News and World Report rankings as the "gold standard" in determining which hospitals are best. But those rankings receive no input from patients. It's like asking Porche and Ferrari mechanics to vote on who makes the best cars, she says.
To fill this gap — and to show patients which hospitals are best serving their needs — Axial has created a patient engagement index that rates institutions based on personal health management, patient satisfaction and social media engagement metrics. (Indices are currently available for California, Texas, Florida and New York.)
Such rankings matter in part due to healthcare reform, which through the ACO model places added emphasis on care coordination. This means everything from follow-up phone call 48 hours after a hospital visit to online bill payment and appointment scheduling to health information exchange to helping patients track vital signs and other important health metrics, Rohde says.
When patients track their progress and share that data with doctors, they take control of their own health, she continues. With chronic diseases making up such a large chunk of what's estimated to be $3 trillion in American healthcare expenses in 2013, giving patients better ways to manage those conditions in their own homes will help prevent repeated, and costly, trips to the hospital.
Smartphones 'Untapped' Patient Engagement Resource
That's the aim of the patient engagement efforts underway at University of Colorado Health. The facility is taking a two-pronged approach to engagement, says Kory Swanson, director of marketing and communications: Interacting with patients when they're in the hospital and then giving them tools to manage their health once they're discharged.
For example, a community outreach effort known as HealthyU provides wellness, fitness and nutrition tips through in-person and online resources. The related HealthyU Adventures iPhone app lets people earn points by tracking simple activities such as drinking water, eating fruits and vegetables, walking and having a good, hard laugh. Users can also find activities and events in nearby northern Colorado.
Patients, meanwhile, can use the Axial Patient app to track weight and blood pressure, among other things. This helps patients measure their progress and doctors take a more granular look at data to try and determine why a particular patient's weight or blood pressure is spiking, Swanson says.
With so much of the population carrying smartphones, it only makes sense for patients to use the devices to track vital signs, as well as more subjective characteristics such as mood, he adds. "I'm excited to see where the healthcare app industry heads. If you look at the technology that we're carrying around in our pockets, there's untapped areas that are pretty cool to see unfold."
Rohde agrees, noting that Axial aims to start where healthcare providers leave off — even chronically ill patients spend mere hours with a doctor over the course of a year. Someone suffering from headaches, for example, needs to know where they're happening and what's triggering them, whether it's food, stress, travel or poor sleep patterns. This will help the patient see undiscovered patterns and share this information with his or her doctor. "All of a sudden, you guys are working together," Rohde says.
Institutions can also realize population health management benefits from such interactions, she says, as they can better understand which patients are taking care of themselves when they leave the hospital, and to what extent. With these details, institutions can better tailor the information that's distributed at discharge and, as cardiologist and mobile health advocate Dr. Eric Topol suggests, prescribe an app. "That kind of visibility has been completely missing," Rohde says.
A Little Empathy Goes a Long Way
Such mobile health apps — and there are tens of thousands, with more coming every day — do serve a tangible purpose. Unfortunately, says Amy Cueva, founder and chief experience officer at design firm Mad*Pow, the vast majority of those apps are disparate from the siloed healthcare ecosystem. (Of course, the patient portals that are part of the ecosystem are often just offshoots of EHR systems, which don't lend themselves to innovation.)
However, linking such apps to patient portals — and turning portals into "centers of information" that give patients tools to better manage the lifestyle changes that often accompany a new diagnosis — will help organizations fill an unmet need, Cueva says. "Empathy can fuel innovation," she says, and understanding when patients feel most overwhelmed in the care process helps organizations provide support when and where it's needed most.
Accomplishing this means changing that ecosystem. The tremendous promise of big data isn't being met, Cueva says, because there are no "bridges" connecting all the information that will improve patient care.
It's not just IT systems, either: Hospital cardiology departments, government researchers, the American Cardiology Association and a patient's employer should all be able to share information about a particular patient .
"The transactional nature of the health system is all about the in-person visit," Cueva says. "Where we see technology not being leveraged, or solutions not being designed, is to maintain an ongoing conversation or level of engagement with the patient."
It's not hard to spot the healthcare organizations that get this right, Rohde says. From the signs throughout the hospital to the cafeteria menu to the location and condition of the patient parking lot, she says, "It's clear from the minute you walk in the door that it's a complete strategy from beginning to end. They see patient engagement as a strategy of running a healthcare institution with patients in mind, which starts at the top … and permeates everything they do."
Brian Eastwood is a senior editor for CIO.com. He primarily covers healthcare IT. You can reach him on Twitter @Brian_Eastwood or via email. Follow everything from CIO.com on Twitter @CIOonline,Facebook, Google + and LinkedIn.