The quantified patient: a patient participatory culture

Abstract

The Quantified Self Movement, which aims to improve various aspects of life and health through recording and reviewing daily activities and biometrics, is a new and upcoming practice of self monitoring that holds much promise. Now, the most underutilized resource in ambulatory health care, the patient, can participate like never before, and the patient’s Quantified Self can be directly monitored and remotely accessed by health care professionals.

Key words::

• Connected device
• Outpatient monitoring
• Quantified Self

Introduction

Human physiology invariably changes from second to second, responding to the stresses and stimuli of daily life, physical activity, sickness, and emotional state. While many of these variations are inconsequential, determining what changes are significant and warrant redressing are imperative to quality patient care, and these fluctuations in physiologic responses and markers continue to vary long after the patient has left the doctor’s office. Since the variability continues outside of the clinical setting, understanding and quantifying the extent, severity, and patterns of chronic disease for each individual is a daunting task.

The Quantified Self (QS) movement1, which aims to improve various aspects of life and health through recording and reviewing daily activities and biometrics, is a new and upcoming practice of self monitoring that holds much promise. This movement has its origins in the management of chronic diseases, such as diabetes, when physicians began eliciting the assistance of patients in tracking blood glucose levels throughout the day. The QS movement began as the aspiration for enhanced self-understanding through data collection, accountability, and goal setting1. As technologies have advanced and medicine has shifted towards more patient-centered care, the Quantified Self movement has blossomed to incorporate a new digital era, gaining momentum in recent years. Wellness and fitness products have historically been targeted for consumers. However, recent reports cite that seven in ten American adults track a health indicator such as weight, diet, exercise, or symptoms2, holding promise for the Quantified Self movement to help electronic and mobile health products and software reach patients3. These sensors are easy to use. They also provide feedback and a high level of biometric information that can be used for patient participation and engagement. Yet, the utilization of these data by clinicians has not kept pace with their adoption by patients.

This paradigm shift via the Quantified Self promotes the concept of a patient fully engaged in his or her health care and puts to use innovations in mobile health applications, sensors, and remote telemetry to monitor and assess health status, and sharing these measures with his or her health care provider. Mobile health (mHealth) is the emerging field of mobile communication devices like smartphones and tablets for capture and access to health information and tools4. With mHealth, patients are provided a forum to find motivation, set goals, and receive feedback. Some of these applications and devices allow patients to form teams and networks with others aiming to achieve similar health goals, while providing feedback and encouragement in proportion to application utilization and engagement5. Now, the most underutilized resource in ambulatory health care, the patient, can participate like never before6, and the patient’s Quantified Self can be directly monitored and remotely accessed by health care professionals.

Patient involvement

As aforementioned, the Quantified Self movement centers around the principle of patient engagement. Patient engagement can further be dissected into five building levels, best described in the patient engagement pyramid7. Analogous to Maslow’s Hierarchy of Needs, this model demonstrates the steps needed in order for the patient to be actively engaged in managing his or her health, setting wellness goals, and communicating effectively with health care providers. As the patient fulfills each level of requirements, starting at the base of this theoretical pyramid, the patient slowly becomes more engaged in health care, moving from a consumer of health services, to a participant in two-way communication via mobile health, to a contributor of health information in their documentation in mobile health applications, to engagement in conversations with treatment teams during health care visits, and finally culminating in daily patient engagement for both wellness and health lifestyle choices via goal setting and tracking. What this offers to the patient is a path to provide him or her with tangible participation in his or her own health care.

Additionally, engagement with measuring and logging daily behaviors or intake can psychologically impact the patient in and of itself, regardless of what is measured. The Hawthorne Effect is the psychological observation of behavior adjustment with participant awareness that what is being measured is being examined8. This heightened awareness can potentially have significant results even without perfect adherence to tracking applications.

The benefits of a quantified patient

The main aims of this movement are to improve various aspects of life and health through recording and reviewing daily activities and biometrics in fitness and health among different populations. Quantified patient applications facilitate patients’ abilities to monitor themselves and for clinicians to use this information to improve quality of care, decreasing patient readmission rates, promoting positive and long-lasting behavioral and lifestyle changes, monitoring and better controlling chronic diseases, increasing information for preventive care, and promoting overall wellbeing9,10. In chronic diseases such as hypertension or diabetes, patients are provided a forum for documenting and reporting daily readings, logging intake, and setting reminders and alarms for medication adherence. Their participation in such applications can be monitored, results can be transmitted to physicians, and information can be incorporated into applications to educate patients on management of abnormal values or titrating medications.

It empowers the healthy individual and patient to take control. It also shifts the paradigm from treatment to prevention. By providing new practice and approaches to prevention and self-monitoring, via wireless mobile health applications and monitoring systems, patients are better equipped to follow and understand recommendations from clinicians, promote more personalized and preventive medicine, and make more informed choices regarding wellness and health care. Similarly, the ability for real-time feedback to acute changes in patient status is possible with such integrated monitoring11. This is a major contributor to the impact of the quantifiable self in chronic disease prevention and management.

While the Quantified Self movement holds innumerable opportunity for health improvement and patient engagement, it does not come without challenges. In order for it to be useful to the patient, he/she must have access to biometric devices and wireless technology, and know what information should be inputted to use the application advantageously. In today’s society, with the ubiquity of wireless technology, many of these barriers can prove malleable with appropriate patient education and proper application use. However, the challenges of backing up or securing data, ensuring appropriate and timely responses to emergent biometric real-time reports, and promoting equal access to mobile health exist despite major recent advancements12. Additionally, the parsing out of clinically relevant data to input and track must be clearly communicated between provider and patient, allowing for the flow of relevant information, appropriate feedback, and data of great utility.

Implications for clinicians

With physician burn out and lack of health care resources on the rise13, it is increasingly more important to foster a participatory culture among patients, building smarter more engaged stakeholders in their own health. Together, these devices in the hands of engaged patients do just that. They also transform the patients’ home and daily routine, providing freedom without the sacrifice of gathering accurate clinical data, as patients can comfortably move about with these user-friendly, portable patient monitoring devices that are less burdensome and hazardous than traditional medical equipment, where leads, wires, and bulky frames used to limit mobility14. Additionally, a continual line of communication is established as physicians can be linked with real-time and accurate feedback with their patients.

What these shifts and trends in the current technology and Quantified Self movement incur for physicians is that providers will require processing systems and software to adapt to massive data retrieval and trending technology. Patient outcomes can more rapidly be recorded and transmitted, linking the provider with daily measurements necessary to manage chronic diseases tailored to the individual, clinical values and biometrics important for real-time monitoring of sick patients, and daily logs regarding fitness and nutrition to promote and encourage behavioral changes, wellness, and prevention of disease15,16. In essence, the trends of the future hold great stock in mobile health applications, highlighting the concept of the engaged patient as an integral tool in the movement of the Quantified Self and the future of health care.

Transparency

Declaration of funding

This editorial was not funded.

Declaration of financial/other relationships

G.A. has disclosed that he holds stocks in Folup Inc., a company that provides digital monitoring services for patients and physicians. G.A. and E.P.L.D. have disclosed that they own stock in You V Labs Inc., a company that builds wearable ultraviolet sensors for patients suffering from photosensitivity. M.L.P., J.-Y.R., and E.S.C. have disclosed that they have no significant relationships with or financial interests in any commercial companies related to this study or article.

Acknowledgments

The authors thank Professor Deborah Estrin of Cornell Tech for her critical review and editorial feedback.