Several entities are involved in the collection, storage, and dissemination of personal health information. Of these, consumers, technology developers, health insurance companies, and federal agencies play particularly important roles. As HIT comes to play a greater role in emergency response and recovery, it is imperative that policies address the needs of stakeholders from each of these groups, particularly in matters of patient care. This is especially important, given the need for more information on the ways emerging technologies might address the unmet needs of special populations (eg, children, the homeless, disabled individuals, non-English speakers, etc). Below, we identify the various impacts that these groups have had on PHR and mPHR development and use, and remaining concerns to be addressed.

A 2012 study from the Pew Research Center concluded that 85% of US adults own a cell phone, 53% of whom own smartphones [21]. Approximately one-third of cell phone owners (31%) have used their phones to look for health information, which is a 17% increase from a national-level comparable survey conducted in 2010 [21].The study also indicated that 52% of smartphone owners gather health information on their phones, compared to only 6% of non-smartphone owners [21]. Cell phone owners who identify themselves as Latino, African American, between the ages of 18 and 49 years, or hold a college degree are also more likely to gather health information using their cell phone [21]. Furthermore, approximately one-fifth of smartphone owners (19%) have at least one health application on their phone. Marketing forecasts indicate that by 2017, half of the world’s 3.4 billion smartphone or tablet users will use mobile health apps [22]. As the use of mobile health applications continue to grow, particularly among specific demographic groups, many entities should consider how mPHRs could be developed to support emergency and post-disaster care, in addition to routine health management.

Consumers, health insurance companies, and mobile application developers have all generated support for PHRs, albeit inconsistently. A 2011 survey of 1200 respondents conducted by IDC Health Insights revealed that 7% (84) of consumers had created online PHRs, but fewer than half continued using them [23]. However, other providers report significantly higher rates of customer retention and PHR usage. In 2011, for example, Kaiser Permanente’s PHR service, My Health Manager, saw 74 million logins, 10 million prescription refills, and 29.7 million lab results viewed, indicating frequent patient-provider interactions [24].

Similarly, certain populations—notably, disabled individuals—have expressed interest in portable PHR solutions such as smart cards or implantable microchips for medical emergencies [5]. One survey of 302 individuals (categorized as “well,” “unwell,” and “disabled”) reported that several nondisabled respondents indicated they had thought about how their information would be accessed in an emergency. However, only disabled respondents described incidents where access to personal medical data rose to the level of a life-or-death issue, which is consistent with disabled individuals’ overall higher level of emergency department (ED) utilization [5]. Interestingly, health-related computer use (ie, searching for medical information, communicating with providers, and filling prescriptions) among disabled populations is 19% higher than that among nondisabled individuals, signifying a potential niche for the expansion of PHR services [5]. Homeless individuals represent another population that could benefit greatly from increased PHR use. Recent research indicates that homeless patients make considerable use of ED services and are significantly more likely to solicit information on chronic health problems than patients with stable housing [25]. A study of more than 5700 ED visitors revealed that 70.7% (176/249) of homeless patients own cell phones (compared to 85.9% of patients with stable housing) [25]. Furthermore, there was no significant difference in the frequency of new media use between these two groups [25].

In light of the failure of now-defunct PHR services such as Google Health and Revolution Health, it follows that successful consumer technologies are those that “inform or entertain users, or enable social communication” [23]. Other groups—notably, Microsoft, Kaiser Permanente, and WebMD—have enjoyed greater popularity among consumers by partnering with insurance companies and other health care providers, a strategy that is successful because it integrates new technologies into existing platforms and business models [23]. Similarly, in a 2008 study conducted by User Centric in which subjects were asked to build their own PHRs, the majority of participants were interested in maintaining them after the study [26]. The move toward digitization, combined with growing numbers of smartphone and social media users, empowers consumers to more proactively monitor their health. As technologies that facilitate this shift, mPHRs could evolve into important elements of today’s HIT infrastructure.

Despite their status as emerging technologies, PHRs—both mobile and Web-based—already come in many varieties and address numerous medical conditions. Because they enable patients to track their health conditions outside of a medical facility, PHRs and mPHRs boast a variety of applications in chronic and noncommunicable disease management, particularly for ailments like diabetes mellitus, heart disease, cancer, and mental illness [8]. For example, BodyKom, a mobile application for cell phones, enables nonhospitalized cardiac patients to track and share their vital signs with physicians via their cell phones [27]. Dexcom has also developed a biosensor that monitors blood sugar levels, transmits data to patients’ mobile devices, and automatically updates their mPHRs as well as their providers’ EHRs [8]. Several mental health applications (eg, Mobile Therapy and CBT MobilWork) function as ad-hoc therapy tools, enabling patients to record symptoms between clinician visits and providing mental health professionals with a plethora of information on their patients’ health statuses outside of medical settings [7]. Given the increasing use of EMRs and EHRs, electronic PHRs and mPHRs in particular represent an important development in HIT.

Given that insurance claims are an important source of medical information, health insurance providers represent another major stakeholder in the expansion of PHR services. Medical practitioners have also shown support for PHRs, particularly in situations involving patient transfer between caregivers [28]. A 2009 national survey reveals that 42% of doctors—especially those practicing in rural areas—are willing to start using electronic PHRs [29]. Companies like Blue Cross and Blue Shield, Aetna, and United Healthcare all offer PHR tools to their clientele; of these, Aetna also offers a mobile option for accessing personal health information.

During the aftermath of Hurricanes Katrina and Rita, medical professionals faced a major health care delivery challenge: obtaining accurate medical histories for the 7500-plus individuals who were ill, injured, or seeking consultation [30]. In response, Blue Cross and Blue Shield, which reported that over 300,000 customers and providers lost their medical records, began offering claims-based health histories to evacuees receiving medical treatment from new caregivers [31]. Hurricane Katrina also prompted the Markle Foundation to implement a different solution to the problem of health care delivery: an online portal called KatrinaHealth, where patients, pharmacists, and doctors could easily access prescription and dosage records in the wake of the storm [32]. System users reported that ready access to this information helped evacuees renew their medications and assisted health care professionals in coordinating care and avoiding prescription errors [33]. The Markle Foundation further reported that electronic PHRs could one day eliminate the logistical barriers associated with maintaining decentralized sets of patient records, but “are not yet a viable solution in disasters…because too few people have them and they exist on multiple platforms that may not be compatible with one another” [32]. Furthermore, because authorities have granted little attention to the management of personal medical information in emergencies, concerns over privacy and security continue to dissuade American consumers from using PHRs [32].

Despite support from consumers, insurance companies, and health care professionals, the federal government has offered relatively little guidance and made limited progress in integrating PHRs into the nation’s existing HIT infrastructure. However, a select few federal agencies, such as the Centers for Medicare & Medicaid Services, have recognized the potential of PHRs and support their use to improve patient-provider communication [34]. HHS has also released a privacy notice for PHRs supporting “individuals’ use of PHRs as a mechanism to facilitate access to, and control over, their health information” [35]. The Centers for Disease Control & Prevention (CDC) have supported HHS’ work on PHRs, calling for further research on confidentiality, security, interoperability, regulation, and evaluation [6]. The US Food and Drug Administration (FDA), meanwhile, which maintains regulatory responsibility for medical devices, has formulated policies pertaining to certain mobile health applications. These policies, however, do not extend explicitly to EHR or PHR applications [36]. In September 2013, the FDA released a guidance document stating that it would exercise “enforcement discretion for mobile apps that enable patients or providers to interact with Personal Health Record or Electronic Health Record systems” [37]. The document goes on to specify that in addressing these applications, the FDA will not enforce the mandates established by the Food, Drug, and Cosmetic Act [37].

Considering the roles that PHRs (including mPHRs) might play during PHEs, increased involvement from consumers, insurance companies, clinicians, and federal entities is necessary. Engaging other stakeholders—emergency responders, medical volunteers, and public health laboratories, for instance—is also critical to the successful integration of PHRs into emergency response efforts.

mPHRs give providers a mechanism to share information with patients, including clinical summaries, diagnoses, educational resources, and appointment reminders. They also enable patients to refill prescriptions, access lab results, track immunizations, and schedule appointments. Some of these features (eg, prescription refills) exist in applications developed by major retail outlets such as Walgreens and CVS, but do not comprise a holistic health record. However, other mobile services (eg, Group Health, Castlight Mobile, MyChart, myCigna, Coventry Mobile, MHBPSM Mobile, Evita Personal Health Record, and Capzule PHR) do serve as holistic records of health information. Still other applications—such as Health4Me and IBX—even enable patients to view their insurance claims, track health spending, and search for local health care professionals. As indicated in one study, the functions of PHRs have the potential to create a more comprehensive and balanced view of the patient, because patients control and manage the information in the record. Health care providers can therefore view records, as documented by patients, directly [11].

PHRs thus allow patients to reference pertinent medical information at any time and share such information with other providers, even during ED visits and other unscheduled visits. This feature of PHRs also facilitates continuity of care if a patient receives treatment from a new provider. The clinician in this case would have access to a thorough record of the patient’s existing medical conditions, including previous medical tests, procedures, prescriptions, and conditions. Such information, in turn, would prevent duplication of tests and treatments and minimize risk of administering medications that can complicate conditions or allergies.

There are several mPHRs that serve many of the aforementioned functions; some are even specially customized for emergencies. Microsoft HealthVault, for example, enables users to create medical records specifically for unexpected hospital visits or to inform first responders. Another application, Gazelle, allows smartphone users to receive and share lab results. Similarly, a Web-based PHR service called Synchart stores patients’ health information and can grant clinicians emergency access to said information during a crisis.

mPHRs, which may improve provision of care during PHEs, give health care providers instant access to a patient’s medical history and recent medical events that can be beneficial in both emergency and nonemergency situations. However, PHEs, which may encompass events as diverse as infectious disease outbreaks, natural disasters, or manmade catastrophes, present logistical barriers that impede health care delivery and timely access to critical medical information. During PHEs, when many patients are displaced or health care facilities lose abilities to access EHRs, mPHRs may be one of the only ways of providing accurate, recent medical information. Patients will likely present to makeshift medical facilities or those with limited operational capabilities, receive care from an unknown provider, or be unable to communicate their medical histories.

When patients are unable to seek care from their primary care physician or a facility with access to their medical history, mPHRs can help providers determine essential information, such as medical conditions and drug allergies, needed to inform treatment options and better coordinate and direct care. Such information could be useful when health systems are strained and facilities may lack adequate numbers of staff. mPHRs can inform providers of important health information that can ultimately reduce medical error and improve triage. mPHRs may also particularly benefit specific populations during PHEs, including nonresponsive patients who cannot communicate with providers, those who seek care at an alternative care site, vulnerable and special populations, and children and young adults. For vulnerable and special populations, such as non-English-speaking persons, those belonging to ethnic minority groups, mentally unstable patients, and those who are deaf or blind, mPHRs may be the only communication method between patient and provider. Smartphone ownership and broadband Internet access among many of these populations is increasing. Nationally, between 2000 and 2011, rates of Internet access increased among Hispanic, Black, and Asian households by 34.7%, 33.3%, and 26.5%, respectively [40]. Similarly, as of 2013, 51.6% of Asians report owning a smartphone, along with 48% of African Americans and 45.4% of Hispanics [40]. Among Latino Internet users, 28% are predominantly Spanish speakers, suggesting that a Web-based PHR platform may be an effective way of reaching this target minority group [41].

Pediatric populations can also present unique challenges to providing health care in emergency settings, particularly when children either do not have or are separated from parents and guardians. In California, for example, there are more than 56,000 children in foster care, many of whom face barriers to health care access despite greater needs (50% of foster care children suffer from at least 1 chronic condition, while 25% suffer from 3 or more) [42]. These patterns also hold nationally, where 90% of children entering foster care have physical health problems and another 55% suffer from 2 or more chronic conditions; these individuals also make more frequent use of costly medical services such as group care, inpatient psychiatric treatment, and ED services [42]. mPHRs will likely benefit clinicians serving this particular population, given the increasing use of smartphones among teenagers and young children. In March 2013, a national survey estimated that 37% of American teens (ages 12-17 years) own a smartphone, signifying another major niche for PHR expansion [43]. Select groups, such as the Children’s Partnership, have acknowledged that effective and accessible PHRs, when linked to a broader health information exchange system, could significantly increase the availability of accurate and timely information for young adults, especially those without guardians [44]. PHRs have the potential to facilitate better communication among providers, families, caseworkers, and others making care decisions on behalf of young people. Furthermore, PHRs also provide a mechanism for young people to become responsible for decisions regarding their own care and build self-sufficiency, particularly for those who lack access to regular medical care. Studies also indicate that PHRs also encourage parents to play more proactive roles in seeking out preventive medical care for their children; for example, parental PHR use is linked to improved immunization adherence [16].

In addition to mitigating the challenges associated with caring for pediatric populations, mPHRs may also be one of the only ways to quickly obtain patient information when medical facilities are struck by disaster and can no longer provide optimal care. As noted in one study, the value of PHRs “extends to contingency preparedness in all categories of events, from natural disasters to terrorist attacks, and infectious disease pandemics such as avian flu” [11]. As health care facilities move toward EHRs as their primary medical record systems, they rely more heavily on basic operational capabilities, such as electricity and functional emergency generators, to access the records stored on a facility’s server. When these assets fail, the quality of patient care, in turn, deteriorates. During Hurricane Sandy, for example, power outages and computer failures forced New York University Hospital to evacuate more than 200 patients (including critically ill infants) and transfer them to neighboring facilities [45]. Recordkeeping challenges often accompany such major transitions of care. Employees at Staten Island University Hospital, for instance, resorted to using paper records to track evacuated patients during Hurricanes Sandy and Irene, a strategy that proved inefficient and burdensome [46]. In such situations, mPHRs could assist health care providers in accessing patient information in a timely manner, thereby enabling them to make informed decisions and diagnoses that can reduce medical error and relay critical information for new patients. Furthermore, many cloud computing data centers often retain redundant power supplies, Internet connections, and hardware to ensure that consumers can still access their data even in the event of a power outage [47]. Providing more accurate and faster diagnoses is imperative when triaging patients and coordinating care during events that overwhelm health care facilities.

Telehealth, the delivery of health care via telecommunication technology, relies on methods such as real-time videoconferencing to facilitate teletriage and medical care in emergency scenarios. Telehealth strategies—videoconferencing, the use of smartphones and wireless networks, and email, for example—have already proven to be effective at sharing information between clinicians and medical facilities [48]. Select PHRs also enable information exchange between qualified clinicians, and can integrate transmission and virtual imaging capabilities. Thus, they offer a platform for “virtual visits,” allowing office-based health care providers and home-based health care workers or patients to coordinate patient management. Even basic patient information, such as blood pressure readings, temperature, glucose levels, and other medical notes, can be transmitted from home providers to physicians via a PHR. These functionalities enable physicians to obtain patient histories remotely and instruct home providers of necessary changes to the patient’s care regimen, which can be a key step toward building home telehealth capabilities. Integrating PHRs into a broader telehealth infrastructure could thus enhance emergency health care delivery by mitigating patient surges at health care facilities.