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December 2009 |
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Participatory health, defined. In participatory health, a patient actively engages in her health in a genuine partnership with clinicians, experts and health coaches. The three key words here are active, engagement and partnership. A fourth underpinning is technology. Increasingly, technology plays an enabling role in a patient’s health tasks. A patient is with a physician merely minutes in the great scheme of her life; the Internet and, at least as important, mobile phones are part of a person’s daily living communications platforms. Life goes on 24x7; so do the choices we make that impact our health and health care. |
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Consider the role of the Internet for consumers in health care. Among American adults who are online, two-thirds use it as a go-to source for health information. The health citizen’s relationship with the Internet strengthens when he has a broadband connection, as the table below illustrates. Nearly 9 in 10 Americans with broadband or wireless connections are health searchers, according to research from the Pew Internet & American Life Project. |
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| Enter mHealth. With mobile technology, people managing chronic conditions have a tool that can support them when they’re not in the doctor’s office. Consider diabetes, among the most complex conditions to manage on a daily basis. Each day, the person with diabetes can make dozens of decisions that impact his health, from ordering lunch and measuring blood glucose levels, to exercising and shopping for groceries. All these are done independently from the direct influence of the physician. Enter mobile health, or mHealth, where the patient’s mobile phone becomes the conduit for ongoing support, advice and medical intervention. One example of this application comes from Sensei, a start-up focused on helping people manage complex chronic conditions on-the-go. A patient responds to a long list of questions based on her lifestyle preferences ranging from favorite foods (both “fast” and home-cooked), physical activity, nature of occupation, family life, and other factors that make up the activities of daily living. Sensei uses this information, combined with personal data on her health condition, to provide personalized “nudges” throughout the day – for example, reminders to take blood sugar counts, suggestions for lunch, and a gentle “shove” to get up from the computer or couch and take a walk. Say it’s lunch time—Sensei knows because it’s got a phone in it. Sensei also knows her patient likes to eat at Taco Bell and so pushes a coupon for dollars off of a taco salad – not applicable to the deep-fried chimichanga, though! Applications like Sensei are in the works among a growing number of start-ups in and outside of Silicon Valley. In addition to existing players in the disease management space, watch for telecommunications providers to play key roles in mHealth. Barriers to participatory nirvana. A first generation of participatory patients is already engaged with their health in some way online and a growing number via mobile phones. PatientsLikeMe, for example, started up in 2004 and boasts thousands of patients with MS, ALS, HIV and other conditions. Patients and caregivers share personal data with each other in order to build a database of knowledge that benefits the entire community. The PatientsLikeMe community represents a highly activated group of patients and caregivers who are at the vanguard of participatory medicine. However, they are not the only ones, and their ranks are growing across disease states and borders. Clearly, though, not all patients want to “participate” in health care. At any point in time, one in four patients prescribed a prescription drug doesn’t follow up and fill or re-fill. Another proportion of patients don’t follow up on receiving recommendations for medical tests or procedures; this is a particularly vexing problem during the recession. The Kaiser Family Foundation’s Health Tracking Poll in September 2009 found that 28 percent of American adults skipped a recommended test or procedure in the past year because of cost. |
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| Thus, there are obstacles on the journey toward participatory health. Aligning incentives, engaging physicians. To do the participatory health tango, it takes at least two dancers: patients and physicians. Most reimbursement schemes don’t reward this collegial medical dance. While physicians are paid on an episodic basis, encounter-to-encounter, there isn’t a strong incentive to manage chronic conditions based on outcomes. However, as payment schemes morph toward paying for performance, bundled payments and chronic care management, physicians will be motivated to engage more directly and collaboratively with patients. The emergence of the patient-centered medical home will also be an impetus toward participatory health collaboration between provider teams and their patients. Closing the loop. If a patient religiously monitors blood glucose, that’s a very good thing. If once measured, a patient’s numbers get automatically populated into an electronic health record, it’s even better. Closing the loop between a patient’s everyday health behaviors and a medical home’s team can help the individual bolster personal health outcomes. As physicians continue to adopt electronic health records as part of the American Recovery and Reinvestment Act economic stimulus package, and patients keep personal health records, “knowing my numbers” – and changing my behavior as a result of those numbers being communicated to a health coach in a provider’s office – will become part and parcel of my ongoing participatory health behavior. Clarifying regulations. When are a blood glucose monitor and personal health record something the Food and Drug Administration considers a medical device under its regulatory jurisdiction? It is unclear how the FDA will treat the convergence of personal health devices and electronic records that result in actionable medical advice. Medical apps that developers launch on Apple iTunes is one pioneering category to consider. The FDA has stated that an iPhone does not itself meet the criteria for a medical device, defined as “an implementation, product, apparatus or other component or accessory, which is used in the diagnosis, cure, mitigation, treatment, prevention of disease or affects any structure of the body.” However, the FDA does regulate mobile devices used specifically for diagnosing and/or treating a patient. The FDA is currently studying the phenomenon of rapidly proliferating iPhone health apps. This is a “stay tuned” area that should be monitored over time. In the meantime, Apple medical apps are one of the fastest-growing areas on iTunes. The Power of the Nudge: how to inspire health engagement? As employers who sponsor health insurance continue to be faced with ever-increasing costs, they’re addressing how to better engage enrollees toward becoming more active participants in their own care. Innovative health plan designs are lately considering the concept of “the nudge:” that is, how to use the plan to move people toward making better health decisions, from shopping for healthier food at the point-of-purchase to taking the stairs at work. Public policy has “nudged” health citizens toward behaviors even without people fully realizing that’s exactly what’s going on in their subconscious. For example, workers participate in 401(k) programs that help them save dollars for retirement. Some people are committed to donating organs for transplant. The concept of the “nudge” is gaining traction in both the private and public sector. The class book on nudging is Nudge by Sunstein and Thaler; the former was a teaching colleague of President Obama at the University of Illinois School of Law, and he’s now a member of the Obama health regulatory team on Capitol Hill. Moving Americans toward greater participatory health will help bend that stubborn, ever-increasing cost curve that has driven health spending in the United States toward 20 percent of the nation’s gross domestic spending. As more stakeholder organizations embrace the potential of participatory health, we’ll make a real difference in both individual health outcomes as well as overall health spending in America.  Jane Sarasohn-Kahn MA, MHSA is principal and founder of THINK-Health, a strategic health consultancy. A health economist, Jane is passionate about the role of technology in enhancing health care quality and access and reducing costs. She is the author of Participatory Health: Online and Mobile Tools Help Chronically Ill Manage Their Care, published in September 2009 by the California HealthCare Foundation. She writes the popular Health Populi blog. |
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Guest Editorial: Participatory Health – The Emerging Era of Engaged Health Consumers