Framing the issue:

  • Getting patients involved in their care is a priority for providers.
  • Many aspects of a care plan occur outside the hospital setting.
  • Emerging payment models that reward outcomes and an emphasis on reducing readmissions are prompting providers to monitor patients' conditions and adherence to care plans after discharge.
  • New technologies make it easier for clinicians to stay in touch with patients wherever they are.

As hospitals transition away from a system focused on treating the sick to one that helps to mange wellness, patients will play a key role. Providers and payers have collected a trove of data on care delivered; what's missing is information reported by patients that links human behaviors to medical outcomes.

Such data can provide key insights into such everyday factors as diet or fluctuations in blood sugar, says Rosemary Kennedy, R.N., an associate professor of nursing at Thomas Jefferson University in Philadelphia and CEO of data collection firm eCare Informatics. "It just completes the portfolio of information that's necessary for clinicians to make [high-]quality, safe decisions for patients," says Kennedy, who is also former vice president of health information technology for the National Quality Forum. "Patients interact with the health care system for brief periods of time, but there's so much that goes on with their care that they are responsible for right now, it's like a black box. We don't have access to that information and, yet, it's very important in terms of their care delivery."

A February study, co-written by Kennedy and published in the Journal of Healthcare Information Management, notes that some 75 percent of health care costs are tied to chronic conditions. Factors outside of the hospital that are controlled by the patient, such as medication adherence and lifestyle choices, have just as big of an impact on outcomes as care provided in the hospital or clinic, the study notes.

For that reason, each patient should be treated as a first-class member of the care team, with the necessary tools to allow him or her to participate. Engaging a patient can reduce unnecessary costs by as much as 21 percent, Kennedy points out. While certain obstacles can stand in the way of meaningful engagement — limited cognitive capacity, the strain of multiple comorbidities or a mood disorder — technology can help to alleviate those hurdles.

Organizations such as seven-hospital Geisinger Health System are harnessing technology at the individual level to improve health and reduce costs. The Danville, Pa.-based network uses a three-pronged approach to engagement, helping patients to manage their visits, understand their health during and following the visit, and control their conditions before they return to the hospital.

The key to getting patients to participate is understanding an individual's preferences, and adapting technology accordingly, instead of assuming that the same strategy will work in each unique case, says Chanin Wendling, Geisinger's director of eHealth. "Where we struggle as a health care industry is adapting the important care protocols to how patients live their lives," she says. "Certain patients are more responsive than others. Some people learn in different ways. Some like technology; some prefer the personal touch. We as an industry need to better embrace that because, ultimately, you need the patient to take the action."

Managing visits and expectations

Hospitals are using such tools as the patient activation measure to gauge consumers' knowledge, skills and confidence in their ability to manage their own health. With pancreatic cancer patients serving as advisers, Virginia Mason Medical Center in Seattle has developed the "Know Me Form" to help visitors articulate what's important to them.

Donna Smith, M.D., director for clinics, says the simple questionnaire lets patients specify their supporters, learning preferences and willingness to make decisions, and the medical center has started using it with every patient at the hospital.

One common thread that emerged from research, Smith says, is the importance of providing information to the patient, and the need to share it at a pace that matches each individual's learning style. "Some of the lowest points emotionally are when people are waiting for information, like waiting for the care plan," she says. "Once you get that plan, you feel as though you have a focused approach to go through this journey with this difficult disease. The need for information, and customizing how it was presented so that people understand what impact they can have on their health, was a real powerful theme."

Clinicians need information up front, too, and organizations like Geisinger are using technology to gather critical information that may have been missing in the past. Poor medication adherence costs the U.S. health care system billions each year. By taking stock of each patient's prescriptions via its portal, Geisinger deduced that about 21 percent of visitors were using at least one of their meds differently than prescribed.

Other hospitals harness technology to manage expectations around the visit, and improve satisfaction. Miami Children's Hospital is expanding the functions of its mobile app, Fit4KidsCare, so that, before patients even arrive at the clinic, they can self-register, scan a QR code upon arrival, and load their details into the electronic health record prior to coming face-to-face with a clinician, says Ed Martinez, senior vice president and chief information officer. The app also can help patients with navigation throughout the hospital, and gauge how long they can expect to wait.

"We want to give the patient more of a sense of what's going to happen next, and alleviate that anxiety of 'When do I get a lab test?' or 'When do I go into the MRI?' or 'When is my family member going to come out of surgery?' " Martinez says.

Seven-hospital Summa Health in Akron, Ohio, uses short video clips at the start of visits to engage patients and calibrate expectations, rather than handing them a thick binder of paper. Through the clips, patients hear answers to common questions, and are encouraged to stay involved with their care, says Carmen Natale, system director of service excellence.

Seventy-eight percent of patients surveyed said the videos gave them more confidence to ask their clinicians questions. And 90 percent said they planned to take new action to manage their health.

On track after the appointment

Education is another key component of patient engagement. With penalties for readmissions pending, clinicians no longer can release patients and hope that every bit of information was heard and understood.

For Summa Health, the solution is as simple as having registered nurses call patients following discharge to see if they have any questions, and make certain they've grasped their medication orders. In addition, it's placing physicians in nursing homes and other long-term care facilities to ensure that patients adhere to their care plans and avoid unnecessary rehospitalizations.

In the next couple of years, Natale says he hopes that Summa can connect all the ways that patients communicate with the system — whether a negative comment on Facebook or routine text message to a doctor — into a relationship map that paints a whole picture of how each consumer prefers to communicate with providers.

"There are so many transitions and opportunities to drop the ball, and technology that's truly focused on the patient will help to prevent some of those gaps in care," he says.

In the Journal of Healthcare Information Management study, researchers piloted the use of a point-of-care kiosk that asks questions to assess each patient's level of understanding and gaps in care following an appointment. For instance, patients might indicate that they don't comprehend some piece of their care plan, and the kiosk would respond by sending an alert to the doctor, who can circle back via a message to his patient's smartphone.

The kiosks, tested in a high-traffic clinic affiliated with Thomas Jefferson University, indicated that about 42 percent of patients did not feel competent enough to manage their medications. Additionally, over-the-counter meds were discussed during less than 80 percent of visits, and exercise for diabetics less than 50 percent of the time.

Other hospitals, meanwhile, are seeking better ways to engage visitors to the emergency department, where there isn't a clearly established patient-provider relationship and communication channel to stay in touch. Edward Hospital in Naperville, Ill., for years has connected with ED patients following discharge, first by telephone, but more recently through email and text messaging.

The cloud-based system asks five questions to gauge well-being, any problems with aftercare and whether the patient was satisfied with the encounter, says Thomas Scaletta, M.D., chairman and medical director of the hospital's ED. Edward Hospital then categorizes the feedback and responds by having the charge nurse call the patient to clarify or the case manager to reconcile the issue. The hospital also makes a push to link a primary care physician to patients without one and to provide patients with a portal log-in ID.

"A lot of these patients are struggling with [not having] a dedicated primary care doc, so we can assign one," Scaletta says. "We just want to make sure that they're being optimally taken care of so that they're not bouncing back to the ED."

Some providers, such as North Shore-Long Island Jewish Health System's Lennox Hill Hospital in New York City, have gone so far as to videotape neurosurgery patients' visits with physicians or discharge instructions. The videos are viewable from a patient's home computer or smartphone.

"Human beings respond to video and audio much better than the written word," says David Langer, M.D., the hospital's director of neurosurgery. "They learn more from it and there are a lot of data incorporated into this."

A patient can view the video once, store it and keep the link on his phone so he can always refer to it. "It's not just some random piece of paper that you stick in your pocket or lose in the car," Langer says. "Just the pure digitization of this is valuable."

Controlling conditions, breaking free from the visit

Hospitals are reaching beyond the confines of the visit and discharge plan to engage patients before they show up at the reception desk. Such an approach is called for in the Centers for Medicare & Medicaid Services' Stage 3 requirements for meaningful use of EHRs. Those criteria include providing decision support for national high-priority conditions, granting consumers access to self-management tools to aid in their care and improving the health of populations.

Beyond its video discharge summary, North Shore-LIJ soon plans to offer patients across its 16 hospitals 24/7 access to their health information through FollowMyHealth.com. At the start, patients will be able to review medical information and data from their hospital visit. But down the line, the system expects to beef up the offering to help patients better manage their conditions, says Mike Oppenheim, chief medical information officer.

The hope is that all the various forms of electronic contact with the patient at hospitals, clinics and other points of care gradually converge into one web of communication. Getting all patients on the portal is the necessary first step.

"The ability to work with home-monitoring tools and programs is a very, very important piece of the patient engagement strategy," Oppenheim says. "Over time, patients will require a much more robust type of education when not in the hospital or practice. This is one very key starter point, but there are so many more things that a true patient engagement strategy requires, that we develop over time."

Health information exchange among various regional providers is another essential piece of Stage 3 meaningful use of EHRs. Indiana Health Information Technology Inc., a state-designated entity, partnered with personal health record company NoMoreClipboard.com a few years ago to offer access to comprehensive patient data through an HIE.

With the help of a $1.3 million grant from the Office of the National Coordinator, they've piloted the use of HIE at 12 different sites, from a rural safety-net clinic to a physician practice. At that small clinic — Jubilee Community Health in Paoli, Ind. — 28 diabetic patients used a smartphone-based personal health record to monitor their conditions by providing daily blood sugar measurements, and keeping track of their moods and diets in an electronic health diary.

All told, some 37.5 percent of those patients stayed actively engaged with their health during the pilot, and 28.6 percent of those improved their A1C levels and well-being.

These days, most Americans are constantly tethered to mobile technology, and the health care field should take advantage of that fact, says Andrew VanZee, the former CEO of Indiana Health Information Technology Inc. and now director of health care strategy and technology for the Indiana Family and Social Services Administration.

"Across our lives, technology is being used every day, and I think that is starting to permeate within the health care industry, both from the providers and the patients," VanZee says. "They're starting to realize that this is part of everyday life. Why shouldn't we have access to real-time information on patients, and why shouldn't they be tied into their providers?"

Looking further into the future, integrated health system Kaiser Permanente in Oakland, Calif., envisions a world in which encounters are no longer linked only to clinical locations, but wherever a patient might be. A patient could take his blood pressure and send it to the doctor via a phone app, rather than traipsing across town for a five-minute checkup, says Mark Groshek, M.D., pediatrician and lead physician for e-health at Kaiser Permanente. Already, the system has some 4.4 million members registered for its My Health Manager app, representing 68 percent of its eligible membership.

"There's a lot of inconvenience built into the you-must-come-to-see-me-to-get-something or the you-must-call-me-to-get-something model of medicine. Having access through a portal just makes a lot of basic things easier," Groshek says.

Which doesn't mean people never need to come to the doctor. "We're not trying to tell them not to do that," Groshek says. "But there are always times when you need a follow-up or you need a refill, and there are a lot easier ways to do it than making you come in or wait on the phone."

About the Series

About the Series This is the second installment in Hospitals & Health Networks' four-part series exploring how hospitals plan to take patient engagement to the next level by involving health care users in all aspects of the delivery system. Engagement of both patients and their families is quickly becoming a hot-button issue for leaders; it will play a larger role in care delivery as the system shifts to a value-based model. It cuts across all dimensions of the hospital, from patient care to readmissions, technology, health literacy and patient satisfaction.

PART 1: An introduction to patient engagement, February
PART 2: Engaging patients at the individual level, June
PART 3: Involving patients and families in health care teams and organizational activities, September
PART 4: Going beyond the hospital to engage consumers in population health at the community level, December

Executive Corner

Personal health record company NoMoreClipBoard.com and Andrew VanZee, the former CEO of Indiana Health Information Technology Inc. and now director of health care strategy and technology for the Indiana Family and Social Services Administration, offer eight lessons learned from a pilot project in which health information exchanges were implemented at 12 sites in Indiana.

1. HIEs are positioned to change the face of patient engagement
• Patients want more and easier access to health information from multiple providers.
• HIEs already integrate and aggregate across the care continuum

2. Patient engagement can contribute to HIE sustainability
• HIEs reinforce their value by helping providers to engage consumers and meet meaningful use requirements.
• HIEs can offer an alternative to "tethered" portals.
• Patient engagement can open the door to new stakeholders, including employers.

3. Crawl, walk, run
• Start small: Get data flowing to patients and expand incrementally.
• Focus on high-value activities first, like achieving meaningful use.
• Begin with the end in mind: Lead off with baby steps, but think ahead to the valuable patient engagement role HIEs can play with ACOs, patient-centered medical homes, chronic disease management, etc.

4. Technology is the easy part
• Leverage the infrastructure you have in place. If your architecture will support moving data from a provider to patient, that's a good place to start.
• Stick with standards: Whenever and wherever possible, use interoperability standards to manage everything from transport to payload.

5. Policy work must coincide with or even lead technology
• Do not underestimate the time required to address policy issues.
• Regulations vary from state to state.
• Provider and patient expectations regarding electronic data sharing are evolving, and you should expect a debate.

6. Errors are unacceptable and avoidable
• Start with in-person transactions.
• Err on the side of caution, even if it means limiting data access.

7. You are already behind
• Hitch the wagons and start moving — there's no danger in getting started.
• Immense danger exists in underestimating how long the process can and will take.
• If the goal is electronic patient engagement two years from now, start working today.

8. Avoid assumptions and stereotypes
• Patients are already using online tools to learn about and manage health and wellness.
Those in health care who lag too far behind may get left behind.
• It is often the patients we least expect to use electronic tools who embrace them. Individuals with chronic conditions, regardless of age or income, are generally the most motivated to try new technology as they struggle to manage their health and information.
• Meaningful use Stage 2 incents health care providers to get at least 5 percent of patients engaged and using electronic tools to exchange information. Focus first on those patients who are tech-savvy and are managing a chronic condition for themselves or a loved one, or who are struggling to assemble medical data for an entire family.