Technology, payment reform, and advancements in social and behavioral sciences are creating a perfect storm, leading to rapid acceleration in our understanding of how to improve health outcomes in a networked world, let’s call it “networked health science.”
Engagement is Relationships
Patient engagement is a key outgrowth of our understanding this new era. Providing real improvements in cost and quality, patient engagement is rapidly becoming an accepted, if not integral, part of improving the U.S. Health Care System. Underscoring the meteoric rise of this new domain of understanding, the Health Affairs February issue is devoted to “The New Era of Patient Engagement.”
“Engagement” is a broad term that lies at the intersection between social science, behavioral science and technology. The essence is this: creating environments that allow people to stay focused on a goal while giving them the tools (often including social connections, information and communication) they need to achieve that goal. In terms of patient engagement, of course, the goal is better health.
The Center for Advancing Health describes patient engagement as “actions individuals must take to obtain the greatest benefit from the health care services available to them.” I think this definition falls short.
Patient engagement is often discussed in the context of technology used to enable action. When many people first hear about engagement in this context, the assumption is that the notion of relationships, such as doctor-patient relationships, are being somehow replaced by technology. But the idea is to enhance communication and, therefore, the relationship.
This is a critical distinction. The relationship is by no means secondary to achieving the goal. If you believe in the Fogg Behavior Model (a description of what is required to get an action to be taken or a behavior to change) we need to focus on both motivation and ability to get results and have people take action. The motivation comes from human connection, the ability comes from sharing information and improving communication.
Social science has shown that our real world and online social networks have a profound effect on our behavior. Actions, in terms of the Patient Engagement path defined by the Center for Advancing Health, are at the end of the engagement path, not the beginning. No patient is an island, and you can’t leave the network out of the equation, as we’ll soon see.
It’s not just about the provider.
When I wrote about engagement as the Blockbuster Drug of the Century, the examples I gave were in improving patient-physician communications. Often neglected in a fee-for-service health care universe, patient engagement with his or her provider is the area with perhaps the greatest room for improvement, but there are other relationships that can be improved with better engagement.
Excellent work by the research team at PatientsLikeMe indicate that patient-patient interactions can improve a patient’s perceived well-being. This suggests that engagement may soon be shown to improve outcomes along multiple dimensions: patient-to-patient, patient-to-physician, physician-to-physician, patient-to-care team, etc.
The graph shows increasing numbers of connections on the PatientsLikeMe platform leads to increased perceived benefits by the patients across 20 different measures, appearing to plateau around 12 connections. If you’ve ever seen a dose-response curve of a medication, you’d find this graph to look incredibly familiar. Looking at these results, if the study of drug interactions is pharmacokinetics, perhaps we’ll need a new field of study called “communitikinetics”.
Is it the motivation or the ability that’s driving the change?
The number of Social Ties on the platform certainly helps with motivation and to stay on track. We’re beginning to see a similar effect with weight loss enabled by engagement on Twitter (hat tip: @EricTopol).
But the ability to enable patients with more information certainly matters as well. PatientsLikeMe invested early and often in user experience design (UX). Some of what came out of their investment in UX, separating them from from other communities, is the focus on data sharing and data visualization.
According to Wicks, “Every patient on PatientsLikeMe can see the complete health record of every other patient.” What PatientsLikeMe found during user experience design is that patients aren’t just looking for camaraderie and understanding, although that helps, they’re looking for actionable results.
Sharing results in this way makes them meaningful and provides digestible insights to lead toward what actions to take. But equally important, through the network of peers, they can have assistance in filtering what’s relevant for them. This is the essence of improved communication to achieve desired results. This study shows the importance of a patient’s network of engaged peers in addition to the technology that’s enabling that engagement.
The study also shows that effective data sharing is becoming a critical piece of engagement, communication and (I’ll be happy to wager) outcomes. As National Coordinator for Health IT Farzad Mostashari said at FutureMed last week, “We are just scratching the surface” of what information sharing can do.
Researchers and Data Sharing
At the same FutureMed, 16-year old cancer researcher Jack Andraka showed how he developed a pancreatic cancer test using carbon nanotubes and antibodies when he was 15.
How did a 15-year-old discover a new pancreatic cancer test? Much of Jack’s success is certainly attributable to his innate intelligence, hard work and persistence (he sent out letters to 200 labs before finally finding one that would let him do his research project), but he says none of this would have been possible without open access to journals that he read that gave him the foundation for the ideas he was able to test. Yes, we are, without a doubt, just scratching the surface of what information sharing can do.
Sometimes, it’s Still About the Provider
Ultimately, all this networked engagement and data sharing is attempting to match problems and solutions. The same is certainly true for physician sharing. That’s what Meaningful Use and payment reform are attempting to drive, but with the effect seen by patients, it may be worth exploring more deeply the notion of increasing communications not just from one doc to another, but within a community of physicians, taking advantage of some of the lessons learned by the designers at PatientsLikeMe.
At the VA and Kaiser, instances where information is networked and shared throughout the system, results suggest lower costs and better outcomes. Syndicom, which has a case-sharing platform for physicians to collaborate, claim they’ve seen better outcomes when physicians have collaborated in an online community. What will it take to redesign an EHR with these ideas in mind?
The Signal and the Noise of Engagement
Future research should explore the “right size” of sharing to get the best results. Too much sharing and too much connection within a network will likely result in diminishing returns, where noise overcomes the signal. This may have been what happened with 12 connections or more on PatientsLikeMe. More research will tell, but in the meantime, focusing on what needs to be exchanged and choosing the right number and quality of connections (as happens via social networks like Twitter) will help amplify the important signals while minimizing the noise.
For me, the groundbreaking part of all this is that by opening up data resources, we’re creating options. The community helps us hone these options to the one that best fits the circumstances (amplifying signal, reducing noise).
This development of options within a community must instruct our policy and our decisions about the future health care system.
As one example, tethered patient portals may help inform the patient, but unless that information can be shared with a community and recombined with other information to provide the right context, it’s of limited value.
The single entry to a portal diminishes the ability of the hospital to build the relationships and the network with outside providers and patients who are so critical to improving care, and ultimately, more patients to the hospital.
Any person in finance can tell you that options have value. We’re going to get very good at valuing options in healthcare over the coming years as these options, driven by sharing information and the ability to develop relationships across vast distances, improve outcomes.
In the words of Vince Kuraitis, many institutions will come around to the idea and the need to establish a program of “Strategic Openness” and sharing. It’s the building up of a community that leads to success, and it’s ultimately in each stakeholder’s own self-interest to help in building that community. As I hope I’ve shown, that will often mean engagement through data sharing.
Just ask the marketers during the Super Bowl, 50% of commercials provided Twitter information. Big companies have learned that community engagement matters. Let’s hope our care providers figure it out sooner rather than later, for their sake and ours.
Note: I’ve paraphrased Michael Nielsen’s phenomenal book, “Reinventing Discovery: A New Era of Networked Science” for my title on this post. We’re uncovering new ways online health care communities can improve health and outcomes, similar to the communities of online scientists he describes that are accelerating new discoveries in several fields.
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