Patient Tools

Healthcare Patient Engagement Remains Elusive

Processes, attitudes, poor design, even fear of too much data stand in the way of true care partnerships. Is greater patient autonomy the answer?
 7 Portals Powering Patient Engagement
7 Portals Powering Patient Engagement
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It seems as if everyone in healthcare is talking about patient engagement, yet few know how to achieve it. What people do seem to agree on is that patient engagement will not be easy, but technology will be an essential part of the process.

"We know today that key patient needs are not being met," Dr. Laura Esserman, director of the University of California at San Francisco's Carol Franc Buck Breast Care Center, said Friday at the Health Technology Forum Innovation Conference Friday in San Francisco, on a panel I moderated.

Stage 2 of the Meaningful Use electronic health records (EHR) incentive program requires 5% of patients to log into and upload data via a portal or personal health record for providers to earn bonus Medicare payments. The panelists actually did not talk about Meaningful Use once I finished my short introduction. Although the 5% requirement clearly weighs heavily on the minds of healthcare CIOs, it seems less important to others pushing greater patient involvement in their own care.

Amy Tenderich, founder and editor-in-chief of, a popular patient resource and community for those living with diabetes, said that little has changed since she was first diagnosed with that disease in 2003. "I was presented with the myth of the healthcare team," Tenderich recalled. She said her care was not well coordinated and that she felt "lost" as a patient, which led her to create DiabetesMine.

[ How do online consults affect patient engagement? Read Online Consults Increasing, Despite Physicians' Concerns. ]

Perhaps patients do not feel engaged in their own care because systems, processes, products and outreach efforts are all poorly designed. For example, Tenderich said creators of diabetes supplies are "detached" from how patients use the products. Otherwise, there wouldn't be so many steps and pieces needed to test blood sugar and deliver insulin.

Indeed, medical products often are ugly and intrusive, which may explain why patients often do not use them as directed, nor always follow proper diet and exercise regimes, take their medications, or generally comply with doctor's instructions.

Dr. Kyra Bobinet, senior instructor and researcher in health engagement at the Stanford University Persuasive Technology Lab in Palo Alto, Calif., has a theory about that. "People don't respond to managing their health," Bobinet said. "They respond to managing their self-image." Tell them that fighting obesity could be more about fitting into a swimsuit than preventing a heart attack, she suggested.

The exception, according to Bobinet, is when there is a "community experience" such as a support network for fighting cancer or diabetes, as Tenderich sought when she got her diagnosis.

Bobinet said that she actually learned the most about patient engagement from the chronic violent juvenile offenders she assisted in a previous job heading an organization that worked with troubled youths. She said these "worst offenders" taught her that efforts to change behavior should focus not on what people should do, but what they actually will do.

Jan Oldenburg, VP for patient and provider engagement at Aetna subsidiary Accountable Care Solutions in Menlo Park, Calif., also expressed the opinion that new strategies are needed. For example, she said, it is shortsighted to expect residents of underserved communities to go out of their way for routine health services. Oldenburg suggested that community centers and even soup kitchens might be good venues for spreading messages about getting involved in their own health and healthcare.

Esserman expanded that thought by saying mobile health should be an option even for low-income populations. "Everybody's got cell phones," she noted, adding that patient engagement and patient satisfaction can drive the kinds of outcomes and cost reduction that policymakers seek.

"Patients become the catalysts [for improvement]," Tenderich said. Bobinet agreed, describing patient engagement as the juggernaut for fixing a broken healthcare industry. The convergence of big data is helping to foster patient engagement, she added.

However, Tenderich worried that there was too much data piling up to be useful to patients. "Less, not more," Tenderich advised in the context of designing consumer-friendly apps and products. She mentioned Glooko, a system that connects glucose meters to iPhones and automatically logs readings, as a simple, effective application for collecting data and managing diabetes.

On the clinician side, Esserman said patient engagement is part of a continuous learning system for practitioners. If patients have the opportunity to provide information, they become more engaged in their own care, she explained, adding that some studies have shown these patients have better health outcomes.

However, Esserman expressed doubt that a lot of current physicians would be receptive to ceding autonomy to patients. "I don't think we have enough critical mass to drive this," she said, adding that she's hopeful that the next generation of doctors will be more open to the idea.

Regulatory requirements dominate, our research shows. The challenge is to innovate with technology, not just dot the i's and cross the t's. Also in the new, all-digital The Right Health IT Priorities? issue of InformationWeek Healthcare: Real change takes much more than technology. (Free registration required.)