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A fundamental precept of participatory medicine is that health care should not be a spectator sport—it’s best practiced in a participatory manner. This requires engagement from both the patient and the clinician.

Yet the typical behavior of health encounters is not that. Too often, physicians still refuse to openly communicate, share information with patients, and partner with them in decision-making, and patients still assume a passive role, thinking that in some way they can get healthy without being engaged. This disengagement from both sides is what I call the “car wash” model of health care, in which the disengaged patients passes through the health care system and gets “health” sprayed on them by health care professionals. This model is not efficient, effective, or satisfying. But many, myself included, thought that that’s how many people think about their health care.

So it was quite gratifying to see the results of a new Society for Participatory Medicine survey. The survey, fielded by ORC International, a professional survey firm, asked 1000 adults five questions. We’re publishing the results in this downloadable PDF infographic: (Click to download)

SPM Infographic on Partnerships and Self-Monitoring FINAL

A key finding: 88% of people believe that working with their health care professional as a partner will help them manage and improve their overall health. This is a stunning endorsement of the participatory health care model, which suggests that partnership, or collaboration, between the patient and their physician (or other clinician) is an ideal model of health care. (I’ve written and spoken about this in the past.)

Part of collaboration is sharing of information. We’ve known for five years, from the OpenNotes study, that patients want access to their health records, and sharing from health care professionals to patients is critical. But information must flow in both directions in a collaboration. And that means that patients should ideally be acquiring and sharing their health information with their health care professionals—and not just during visits. This idea is sometimes called patient-reported outcomes or in a more general sense, patient-generated health data.

Prior research has shown that self-monitoring can result in better care than in-office monitoring in areas like hypertension and diabetes, and various types of self-monitoring is frequently used in these conditions as well as congestive heart failure, asthma, some cardiac rhythm disturbances, and other conditions. The McKinsey 2015 Consumer Health Insights survey found that a minority of respondents had used a technology of some type to monitor their health status, with up to 40% of young adults having done so. And although there is great potential, not all studies have demonstrated improvements of clinical outcomes with mHealth tools. And, at least as far as fitness trackers are concerned, most adults don’t use one and more than half that have tried have abandoned them within two years. However the market for wearable monitors is expected to rise from $20B to $70B by 2025 and the patient monitoring device market will reach almost $25M by 2020.

But until now little has been known about the interest or willingness of the general population to self-monitor using a device—for things like blood pressure, heart rate, respiratory rate, glucose, and physical activity—and to share this data with their health care professionals. In this survey, 84% of respondents felt that monitoring themselves with a clinically accurate device between visits was important to their health. Moreover, when asked whether it was important to themselves only, their physicians only, or both, 77% felt that it was equally important to themselves and their health care professional. In fact this information sharing is important: a recent study in which patients self-monitored but did not collaborate with their physicians showed no impact on clinical outcomes or costs of care. On the other hand, a recent survey by Pew Research Center revealed that people are generally willing to share their health information with their physicians in exchange to streamlined access to their medical records and online convenience transactions, but some expressed concerns about privacy and security of their stored  health data.

But feeling that something is important and being willing to do it are two different things. 76% of the respondents told us they would use it and most of those said they would share the information with their health care professional, further underscoring that patients view health care as a partnership. Furthermore 81% told us they would be more likely to monitor themselves with a device if it was recommended by their health care professional, making abundantly clear that the clinician is absolutely still the trusted authority: patients view e-health devices as a new tool for health, not a substitute for clinical care.

This survey will spark many additional research questions. For example, are attitudes dependent upon socio-economic status? Health status? Age? Will people who say that they will self-monitor actually do so? What types of systems for sharing self-monitoring data with health care professionals will be most acceptable to patients? To physicians?

But the results are exciting because they shows us that Americans want to partner with their health care professionals and they are willing to participate in monitoring and sharing their physiologic information with their health care professionals—especially if they are asked to do it.


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