Patient Engagement: Man Finds Own Cancer!

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Jonathan WaldPatient engagement in health care (or patient-centered communication, as it’s often called) has been compared to marriage, where the relationship between care seeker and caregiver is based on trust, respect, openness, and empowerment. Patient engagement is like marriage in other ways, too: It can be complex and fragile. When it works, satisfaction and financial soundness are the rewards. How this happens and what’s at stake were detailed by Jonathan Wald, MD, MPH, on March 5, 2013, in New Orleans, Louisiana, at the Health Information and Management Systems Society’s annual meeting, where he presented “The Business Case for Implementing a Patient-Centered Communication Strategy.” Wald is director of patient-centered technologies in the health-care unit of RTI International, an independent, nonprofit research/development organization. Formerly, Wald was director of the patient gateway program for Partners HealthCare in Boston, Massachusetts, and he taught at Harvard Medical School. Wald uses a betrothal metaphor when discussing patient-centered care. Both patient and provider must be committed to the process, he says. In showing just how important engaging a patient with his or her personal health record (PHR) can be, Wald offers a dramatic example that features a radiology report viewed through the patient portal of Vanderbilt Health (Nashville, Tennessee). In 2008, a man went to his primary-care physician complaining of excruciating chest pain. A subsequent CT exam of the chest showed nothing, but the radiologist noted a secondary finding: a spot on the man’s thyroid, Wald says. It was only later, reviewing his PHR through the patient portal, that the patient noticed this finding on page three of the radiology report. The patient’s primary-care physician, apparently satisfied that there was no chest-pain problem, had overlooked the secondary finding. Wald says that the patient went back to the primary-care physician, and a cancer was discovered on the patient’s thyroid. It was treated successfully. Had the patient not noticed the secondary finding, the outcome could have been far worse. The point, he adds, is that the patient discovered the radiologist’s finding—and his own cancer—because the PHR was there for him to review. Bottom-line Benefits Increasingly, Wald stresses, patients are demanding accessible electronic health records. Providers able to meet these demands gain from electronic interaction with the patient, and the patient portal is the gateway, Wald says. Remember this: The marriage is a two-way relationship of patient and provider. Providers embracing electronic patient-centered communication will discover multiple efficiencies, from appointment scheduling to reducing no-show cases, Wald says, underscoring benefits to providers’ bottom lines. In addition, designated staff members who regularly review electronic records can support patients’ medication compliance and can lay the groundwork for what is to be accomplished in office visits. Wald notes that many public and private entities are now establishing the rules of the game for patient-centered communication with providers. These include four concepts for patient engagement developed by the Institute for Patient- and Family-Centered Care: First, ensure that dignity and respect are accorded to both parties; second, share information; third, participate jointly in decision making; and fourth, collaborate in institutional planning, policy development, and the evaluation of services. Another patient–provider engagement framework has been developed by the Center for Advancing Health, Wald says. The framework establishes 10 patient goals, including finding safe and decent care, paying for care, making beneficial treatment decisions in collaboration with providers, seeking health knowledge, and obtaining preventive care. Wald notes that the consumer-engagement campaign of the National Coordinator for Health Information Technology has pinpointed access, action, and attitude as key factors in patient–provider electronic communication. A shift in mindset is taking place, with participation by both parties in health-care decisions becoming routine, Wald stresses. The Debate Is Underway This is a new landscape, Wald adds, with many vendors of communication systems capitalizing on the growing demand for patient–provider communication. One of the problems with patient–provider communication systems is that there are so many of them, Wald adds, and debate is ongoing about how closely to align patients’ PHRs with hospitals’ electronic health records—and whether to keep each system discrete. There also is continuing debate about the specific information that is to be shared. Wald suggests that an array of care options—presented to patients when there is doubt (on the part of the provider) about which option will ultimately prove most beneficial—might be less than helpful. Nonetheless, providers should encourage electronic communication from patients between office visits, Wald says, particularly when setting an agenda for what’s to be done at upcoming visits. Email also is an efficient way to answer patients’ questions. Anecdotal evidence of the clinical value of patient engagement is often cited to show the benefits of electronic patient communication, but there is more thoroughgoing documentation of clinical benefits as well. Observational studies, case reports, retrospective cohort studies, prospective quasi-experimental studies, and randomized controlled trials are clearly documenting that electronic patient engagement has clinical value, Wald says. A Kaiser Permanente study¹ conducted from 2005 through 2008 compared patients who used secure messaging to interact with their physicians with a similar group of patients who had no electronic messaging. The patients all had diabetes, hypertension, or both. Patients who used the electronic communication displayed higher Healthcare Effectiveness Data and Information Set (HEDIS) scores over time, whereas the patients without the communication showed no change in HEDIS scores. Wald says that the patients using electronic communication were able to report changes in their conditions and discuss laboratory results, new conditions, medication changes, referrals, and future appointments, all to the patients’ benefit. Wald was the coauthor of a 2008 report² documenting the benefits of having patients share personal electronic health journals with their physicians, prior to appointments. This study, too, focused on patients with diabetes. Patients who submitted electronic journals to their physicians had a 53% medication-change rate following their appointments, while the control-group patients had only a 15% medication-change rate. Wald notes that patients and physicians always face care questions of varying complexity. Should antibiotics be administered for an ear infection? Should surgery for benign prostatic hypertrophy be undertaken at once, or should there be a period of watchful waiting? Should a patient with a rare cancer be given an experimental treatment? The uncertainty and disagreement surrounding many health decisions create a zone of complexity, Wald says. Patient communication is needed, in these instances, to remove some of the uncertainty in care decisions, Wald believes. George Wiley is a contributing writer for