They're everywhere — reclined in emergency department beds, waiting at the doctor's office or picking up prescriptions at the pharmacy. Millions are willing to lend their expertise to hospitals across the country if health care leaders would just give them the go-ahead.
Patient engagement has grown from an ill-defined buzz phrase uttered at conferences or board tables to a strategic imperative for hospital leaders. Fully involving patients in their care can bear fruit throughout the delivery system, from avoiding costly rehospitalizations, to improving health literacy and patient satisfaction scores.
"I don't think that the vast majority of executives of hospitals and health systems really understand the potential for these partnerships," says Bev Johnson, president and chief executive of the Institute for Patient- and Family-Centered Care. "This is a paradigm shift in thinking about how to plan, implement and evaluate systems of health care delivery. Traditionally, we have not partnered with people we serve."
Hospital leaders thought that hiring the smartest, most committed people was the way to create appropriate systems, Johnson says. That's left out one critical perspective. "We have positioned patients as passive recipients of care, not fully recognizing that they have tremendous insights, expertise and experience that can help us build cost-efficient, high-quality, safe systems of care."
A hospital's willingness to engage its users also has financial implications, beyond just the dollars lost because of unsafe, poorly coordinated care. Under the Centers for Medicare & Medicaid Services' Stage 2 requirements for meaningful use of electronic health records, hospitals must allow at least 5 percent of patients to view, download and transmit their health information within 36 hours of discharge. And with reimbursement increasingly tied to satisfaction surveys, how better to improve the patient experience than by giving them an active role?
Also, patients increasingly are shopping around for the doctor or hospital that best suits their needs, and engagement is emerging as a brand-differentiator for organizations. According to a recent consumer survey by Accenture, 41 percent of patients are willing to switch doctors to gain access to their health records. Some 84 percent believe they should have full access to their records, yet only 31 percent of physicians agree.
Kaveh Safavi, global managing director of Accenture's health business, believes the gap between patient and provider perception will narrow in the coming years. Stage 3 meaningful use eventually will increase the patient's ability to self-manage care and access comprehensive data, but hospitals now have the chance to get ahead of the pack.
"The concept of the patient as a consumer is poorly understood in health care," Safavi says. "Looking forward, these customercentric models will become an inevitable reality for health care, but health systems have a small window of time to leverage them as a differentiator before becoming mainstream."
Are They Ready to Engage?
As hospital clinicians have learned in the past, not all patients are willing to take a more active role in their care. Some bring challenges with them, such as a language barrier that prevents them from following their doctor's orders, a lack of transportation to obtain a prescription, or an ugly past experience with the health care system, leaving them less willing to engage. Moreover, many clinicians can be unwilling to see past old ways to treat the patient as an involved member of the care team.
The best place for any hospital to begin formulating its engagement strategy is to perform a self-assessment, gauging how much improvement is needed, says Maulik Joshi, president of the American Hospital Association's Health Research & Educational Trust. Questions to be asked include: Are patients and their families included on advisory councils? What level of access do patients have to their records, and how does that match up with their expectations? Are families able to visit their loved ones at any time of day, if they so desire?
HRET, through a grant from the Gordon and Betty Moore Foundation, is working on a 40-question survey of the nation's hospitals to determine how they're performing on patient engagement. Hospitals received the questionnaire at the end of last year, and the results are expected to be released by mid-2014, Joshi says. He hopes that the data help to propel the issue of patient engagement forward in the same way patient safety data are leading to enormous improvements in that area.
"When we got to the number of how many potential harms or medical errors [could occur], we realized the magnitude of the problem and the opportunity for improvement," Joshi says. "We're better now at measuring so many things in health care. Patient and family engagement is the next one. If we can do that, it will really help us focus on where we can make the biggest impact for our patients."
Others, meanwhile, are figuring out ways to measure precisely how prepared patients are to get involved in their care. At the University of Oregon, researchers have developed a tool they call the "patient activation measure," which gauges each user's knowledge, skills and confidence in their ability to manage their health. Based on 10 questions, the tool allows clinicians to group patients into one of four different levels, from just beginning to take a role in their care, to maintaining it. In one recent study by Oregon and the Boston University School of Medicine, researchers found that patients with the lowest level of activation were almost twice as likely to be readmitted to the hospital within 30 days of discharge.
A Continuum of Engagement
But where among their vast service areas should hospital leaders target and prioritize for engagement? In its 2013 report "Engaging Health Care Users: A Framework for Healthy Individuals and Communities," the AHA's Committee on Research offers a four-piece continuum in which to engage patients. That starts at the individual level through personal health records and health information; then rises to involve patients with health care teams, including rounding and change-of-shift reports; to the organizational level, using advisory councils and patient advocates; and, finally, engaging at the community level to tackle population health.
Technology, specifically the EHR, is a key tool for engaging consumers, as hospitals use the patient portal to collect information, share educational tools and help users to stay on top of their treatment plans. At the Mayo Clinic, in Rochester, Minn., employees are exploring how to engage patients from the first contact with the health system. By asking a series of open-ended questions over the Web, it could gain insights beyond each patient's medical needs, delving into past experiences and psychosocial traits that shape their willingness to engage.
From there, they can group patients into five different types and decide how to plan their care, says Kate Dudgeon, a service designer with Mayo's Center for Innovation. Those range from the deniers (who take no role in managing their care), to minimalists, maximizers (taking an active role in their care), maximizers with supporters, and self-actualizers (who embrace their condition and see an opportunity to educate others). Mayo hopes to implement the questionnaire in all of its departments, and may incorporate these patient types into its EHR. Dudgeon says peeling back the layers that form the patient's identity can help to direct the best care.
"By asking those simple questions up front and allowing patients to form their thoughts in a response, we're getting some really, really interesting information telling us who they are, preparing us for their visit and allowing us to more appropriately triage their needs," she says. "It's not going to give us the whole picture of the patient, but it will at least get us down the right pathway."
New York–Presbyterian Hospital in New York City has used its patient portal, MyNYP, to engage its individual customers in a variety of ways. Through an aggressive effort to expand its use, including handing hospital visitors tablets to sign up, the portal already has some 50,000 enrollees and counting, says Helen Kotchoubey, corporate director of information services. The award-winning hub offers patients everything from weight-loss solutions to information on how to become an organ donor. Most popular, though, is the ability to peruse one's medical records, while viewing appointment information is the second most-used feature.
MyNYP has shown success since its implementation in 2009, with an increasing number of patients' scheduling appointments through the portal, along with a drop in the number of no-shows. Kotchoubey says they're constantly exploring ways to enhance the site, recently offering patients the chance to read clinical trials over the portal. On the horizon in 2014, inpatients will be able to view their allergies, see who's on their care team and record their pain for caretakers to see.
Important in fashioning an EHR strategy, experts say, is ignoring preconceived notions. Some might believe millennials thirst to connect with their care through apps, while boomers would rather dial a rotary phone, but Kotchoubey says the first person to schedule an appointment through MyNYP was an 81-year-old man. "Keeping an open mind and not having too many preconceived notions, while being smart about where you focus your efforts, is really important as it relates to patient engagement," she says.
Beyond technology and individual health, hospitals are seeking ways to systematically engage patients in the design and delivery of care. In the 2013 "Guide to Patient and Family Engagement in Hospital Quality and Safety," the Agency for Healthcare Research and Quality outlined four strategies to more effectively involve patients in improving care. These include working with patients and their families as advisers, bolstering communication among all stakeholders beginning at admission, including patients in nurse bedside shift reports to sharpen handoffs, and engaging users in discharge planning.
Hospitals are busy and complex organizations, with several different quality and safety topics competing for hospital leaders' attention, says Jeff Brady, M.D., associate director of AHRQ's Center for Quality Improvement and Patient Safety. But engaging patients and their families is a proven way of expanding a hospital's quality and safety agenda that doesn't require a massive use of resources.
"In a very fundamental way, when the patient is more informed and actually helps as an active participant in his or her own care, that often has a protective effect to help prevent the occurrence of adverse events like medication errors, falls and misunderstandings about their care in general," Brady says.
Anne Arundel Medical Center in Annapolis, Md., implemented strategies from AHRQ as part of a yearlong pilot project. The regional health system has found ways to ingrain patient involvement in all aspects of its safety strategies. In 2012, it formally highlighted the importance of patient and family-centered care by writing it into the system's goals and strategic plan. Anne Arundel's chief nursing officer regularly attends meetings of its patient and family advisory council. And, individual units are awarded banners for having the most improved patient satisfaction scores.
The medical center even invites patient and family advisers to the interviewing processes when recruiting new executives, says Sherry Perkins, R.N., chief operating officer and chief nursing officer. Hospitals that exclude their users from key planning decisions are missing the most critical viewpoint to the process, she believes.
"It's fundamental to being a health care provider that you engage patients and families in the design, delivery and evaluation of care," Perkins says. "They can see the work we do through a different lens and give us advice to improve truly every aspect of what we do."
Some barriers might prevent integrating the patient and family perspective into every aspect of the system, says Johnson of the Institute for Patient- and Family-Centered Care. Paternalistic attitudes of the past may contribute to doctors' believing that they know best, while other clinicians might feel too strapped for time to
reinvent their ways. Johnson says that hospital leaders must educate their employees in how to think in a more patientcentric fashion, and instill the expectation that the system has to be run in such a fashion.
"If we're going to see meaningful engagement of patients and families at all levels, it needs the vision and commitment of senior executives," she says. "They don't have to do all of the work, but they really have to create the expectation that this is how work is done in this health system."
Getting to Them Early
As hospitals move toward a value-driven payment model that's focused on wellness, population health and keeping beds empty, leaders also are brainstorming how to engage community members before they enter the system. Online networks such as PatientsLikeMe are sprouting up on the Web to allow those with the same disease to share their experiences, while simultaneously letting researchers gather information.
Accenture's Safavi envisions a world in which hospitals can gather big data to help patients make better health care decisions, similar to how Amazon.com tailors offerings to each customer based on purchase history. As telehealth advances further, clinicians will be able to reach out to patients in the community who can't make a trip to the hospital. And Safavi sees health care eventually adopting self-service platforms, similar to the ones that municipalities use to let residents report potholes, to raise concerns about health issues in the community.
Benjamin Chu, M.D., president of Kaiser Foundation Hospitals' southern California region and co-chairman of the AHA Committee on Research, notes that patients only spend an hour or two with the health care system, on average, and hospitals must engage local health departments, churches and schools to get a better view of their service area. The Affordable Care Act requires that hospitals perform community needs assessments, Chu points out, and he hopes that executives take seriously what they find in those explorations, rather than just producing a report that gathers dust.
"There's a lot we could do to get families, patients and communities to foster better and healthier behaviors, and it can't just be the health care system," Chu says. "Health care institutions need to get out there more and go further upstream. In general, I think people are talking about these things a lot more, and beginning to understand that the acute care model only takes us so far."
Marty Stempniak is a staff writer for Hospitals & Health Networks magazine, Chicago.
Key Questions: Patient Engagement
Boards can use these questions to focus discussions about implementing a patient engagement strategy
1 Does your organization have a clear definition of patient and family engagement?
2 Have you elicited input from staff and representative patients and families about what your organization will look like if it is successfully engaging its users?
3 Have you discussed findings and conclusions with staff and patients to create awareness and lay the groundwork for improvement efforts?
4 Did you select measures that will allow you to see whether processes and outcomes are changing?
5 Will you share the results with staff, the community and the public?
Source: "A Leadership Resource for Patient and Family Engagement Strategies," HRET, 2013