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  1. Tiase, Victoria L. MSN, RN-BC

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Due to the efforts of the Health Information Technology for Economic and Clinical Health, or HITECH, Act, clinicians are more active users of electronic health records (EHRs), which is encouraging the collection of more clinical data than ever before. This has gifted our industry with massive amounts of health data available to aggregate for assimilation into clinical practice with the hope of having a valuable impact on patient care. However, as we're navigating the current sea of data, there's an even larger tsunami in our midst in the form of patient-generated health data (PGHD), defined by the Office of the National Coordinator for Health Information Technology as health-related data created, recorded, or gathered by or from patients (or family members or other caregivers) to help address a health concern. With the proliferation of affordable mobile health (mHealth) technologies and devices, such as smartphone apps, wearables, and sensors, PGHD is more easily collected.

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As clinicians and patients, we now have a tremendous amount of health data at our fingertips that's expected to be used. According to the Pew Research Center, 95% of Americans now own a cellphone of some kind.1 It's estimated that there are over 165,000 health-related smartphone apps available for public use. The majority (78%) of healthcare consumers wear or are willing to wear technology to collect data.2 Although the amount of data may seem overwhelming at times, there are many advantages to using PGHD and various implications for nursing practice.


PGHD benefits

Nursing can take advantage of PGHD collection in the areas of patient assessment, care coordination, and patient engagement. PGHD serves as an added source of valuable data not captured from patients during initial assessments due to lack of time or poor recall. Collecting these data directly from patient devices may fill in some of the gaps in the medical history and, with the promise of interoperability, has the potential to decrease clinician documentation burden. This is especially true for the collection of social determinants of health data-conditions in our environments that affect a wide range of health, functioning, and quality-of-life outcomes and risks.3 Challenges associated with the collection and integration of social and behavioral elements of health data into the EHR may be overcome with the data retrieved from biometrics or home sensors.


mHealth data sources also have the potential to assist with care management between visits, permitting patients with chronic conditions to collect and monitor their physiologic signs electronically. Examples of uses include daily BP measurements that are collected and monitored via a smartphone and aspects of medication adherence that are tracked with the use of smart pill boxes. Ideally, once collected, nurses can utilize dashboards to trend and analyze PGHD to identify risks and address issues. Having this information at the point of care may allow for earlier interventions and improved outcomes. Similarly, PGHD can facilitate care coordination efforts. A number of mHealth apps enhance the patient-nurse dialogue, with the exchange of secure messages for shared decision making and ongoing communication that extends beyond the visit.


Most important, the use of mobile devices to collect PGHD can facilitate patient engagement by encouraging autonomy and self-management. Patients have instant access to data, allowing for immediate feedback to make decisions, track lab results, or refill prescriptions. PGHD collection is also encouraging a shift to the coproduction of health by which patients and providers partner together-both armed with data-allowing healthcare to become relationship centered. Patients are delivering PGHD during healthcare provider visits with the expectation that it will aid the provider. This addition of rich, contextual patient-generated data provides the opportunity to have a great impact on patient care.


Nursing preparedness

To prepare for the paradigm shift to patients generating, capturing, and sharing their own data, consider the following.


Encourage dialogue. One recent study found that "the adoption by health professionals to incorporate PGHD into routine care is still slow" and "many providers are not prepared to collect and analyze mHealth data."4 There's a need to understand concerns about sharing and receiving PGHD.


* Encourage nurses to have open discussions with patients about their PGHD practices and their level of interest in sharing.


* Start conversations with nurses to understand the level of comfort in incorporating PGHD into current workflows and advocate for the inclusion of PGHD in care processes.


* Assess nurse readiness to answer patient questions and concerns regarding PGHD.



Develop/disseminate policies. Meaningful Use Stage 3 proposed requirements include recording and accessing PGHD information directly and electronically shared by a patient, coming from multiple sources, including mobile devices, and incorporating PGHD into the EHR. It's important to ensure that nurses are well-versed in policies and procedures, as well as nursing responsibilities regarding the incorporation of PGHD into the EHR. If policies don't currently exist, utilize the shared experiences of nurses to influence policy and practice.


* Become familiar with your organizational policies on how to collect and use these new data sources.


* Encourage broader approaches to collecting PGHD across the traditional boundaries that nursing facilitates.


* Provide guidance for nurses on how to operationalize and interpret PGHD once collected.



Foster evidence and research. A recent study found that the ability for providers to integrate data from mHealth devices into care is lacking.5 Work is needed to understand how to make PGHD actionable at the point of care in accordance with clinical workflows for the greatest leverage. Nursing informatics research is poised to lead the way in the areas of usability, education, and the impact of PGHD on nursing quality outcomes.


* Encourage the exploration and creation of evidence to incorporate PGHD into nursing workflows to understand barriers and opportunities.


* Support inquiry into the development of strategies for implementing PGHD in clinical care processes, considering the ethical implications of different strategies.



The future is now

According to Dr. David Nash, dean of the College of Population Health at Thomas Jefferson University in Philadelphia, Pa., "85% of a population's well-being, its quality of life, is due to factors other than medical care," which means that only about 15% of healthcare occurs inside the four walls of a hospital or practice setting.6 The generation of PGHD via mHealth technologies allows for the collection of data anywhere, anytime, for a more complete patient picture than ever before. The newer generations of patients are expecting their data to be used and as trusted patient advocates, nurses and nurse leaders must prepare to respond with the best evidence, policies, and collaborative dialogue. Ultimately, the use of patient-generated data in the clinical setting affords us the opportunity to encourage and empower patients, reduce workload, and improve health, putting patients in control of their personalized data. Our nursing strategies and efforts should anticipate this future.




1. Pew Research Center, Mobile fact sheet. http://www.pewinternet.org/fact-sheet/mobile/1. [Context Link]


2. Safavi K, Ratli R, Webb K, MacCracken L. Patients want a heavy dose of digital. https://http://www.accenture.com/_acnmedia/PDF-8/Accenture-Patients-Want-A-Heavy-Dose-of-Digital-Infographic-v2.pdf. [Context Link]


3. Hull S. Patient-generated health data foundation for personalized collaborative care. Comput Inform Nurs. 2015;33(5):177-180. [Context Link]


4. Lai AM, Hsueh PY, Choi YK, Austin RR. Present and future trends in consumer health informatics and patient-generated health data. Yearbook Med Inform. 2017;26(01):152-159. [Context Link]


5. Price Waterhouse Coopers Health Research Institute. https://http://www.pwc.com/us/en/health-industries/health-research-institute.html. [Context Link]


6. ManagedCareMag.com. A conversation with David B. Nash, MD, MBA: game changers for population health. https://http://www.managedcaremag.com/archives/2014/1/conversation-david-b-nash-md-mba-game-changers-population-health. [Context Link]