Suzanne BAKKENa, Patricia BRENNANb, Leanne CURRIEc, Patricia DYKESd, Kathy JOHNSONe, Susan NEWBOLDf and Diane SKIBAg
aSchool of Nursing and Department of Biomedical Informatics, Columbia University,
bUniversity of Wisconsin-Madison, Madison, Wisconsin, USA
cSchool of Nursing, Columbia University, New York.
dClinical Informatics Research and Development, Partners HealthCare and Harvard Medical School, Boston
eSchool of Nursing, University of Wisconsin-Madison
fVanderbilt University, Nashville
gUniversity of Colorado Denver, USA Current State of Deployment
The state of personal health information management systems (PHIMS) in the US is rapidly evolving from paper-based tools to online personal health records (PHRs).
PHRs are best thought of as a suite of interoperable tools that help individuals track health status and meaningfully engage in health practices and health care. Anchored in data sources like electronic health records, PHRs may also include communication utilities, data interpretation and visualization routines, and access to knowledge resources such as evidence based guidelines, quality ratings of clinicians and health care providers, and public health alerts. Individuals can use a variety of electronic devices, such as ‘smart’ cell phones, web browsers, and intelligent devices to interact with PHR tools; output may appear in the forms of reports printed on computer screens or papers, audible warnings, or electronic messages sent automatically to their care team. There is less work being done on other approaches for personal health information management such as the use of social network sites.
Three PHR models are dominant in the US: stand-alone, tethered and integrated. These three differ in respect to how content is created or populated, who controls or owns the record, and the degree of patient accessibility (Detmer, Bloomrosen, Raymond & Tang, 2008). Currently nine percent of consumers surveyed have a PHR; 42 percent are interested in establishing PHRs that are connected online to their physicians (Deloitte, 2009). PHRs are used more often when people have the opportunity to not only manage their own personal health data, but also given tools that help them manage their families’ health, as in the tethered PHR of Kaiser Permanente (Seidman, 2009).
The Medical Library Association (MLA)/ National Library of Medicine (NLM) Joint Electronic Personal Health Records Task Force enumerated a list PHRs that are electronic (web, CD, USB) and used beyond a single hospital or employer (Table 1).
Many of these are stand alone options. While not PHRs themselves, GoogleHealth and Microsoft Healthvault are providing the foundation for some PHIMS development in the US. Many institutions have moved or are moving toward tethered PHRs. Kaiser Permanente and the Department of Veterans Affairs (http://www.myhealth.va.gov/) are two large healthcare systems with a substantial PHR user base. Details are provided for two additional examples are Patient Gateway at Partners and MyHealthatVanderbilt.
Patient Gateway is a secure, web-based patient-portal developed by Partners HealthCare in Northeastern, MA, USA (Grant et al., 2006). Patient Gateway facilitates communication between patients and their providers over the internet and provides a means for patients to request prescription refills, schedule appointments and authorize insurance authorization electronically. Patients and authorized representatives use Patient Gateway to send secure messages to the practice and access understandable and valid health information online. Providers can save copies of Patient Gateway messages in the Longitudinal Medical Record (LMR) as a communication note. Recent enhancements to Patient Gateway include features to engage patients in the medication reconciliation process and to report medication side effects. In addition, Patient Gateway has tools to support patients in management of chronic illness, in entering personal health information, in updating family history and in promoting adherence to national health maintenance guidelines.
Table 1- PHRs in the United States
AHIP PHR Standards 24,000 users and includes the following features:
Remote viewing of personal medical information, including laboratory test results, diagnostic imaging reports, medication lists, allergies, and vital signs.
Laboratory results with normal ranges, patient historical values, trending graphs.
Interactive messaging to ask caregiver questions and request new appointments.
Single chart of all appointments with contact, location, and parking information
Ability to pay Vanderbilt bills online.
Topics on relevant medical information populated based on patient age and diagnosis (pulled from billing codes).
Ability to assign delegates to act on their behalf for these functions.
Links to Vanderbilt University Medical Center (VUMC) phone and other resource directories.
Internal organizational features include linking directly to StarPanel (VUMC’s internal electronic health record system).
The distinction between tethered and integrated PHRs is not totally clear in the literature in the US. In a recent New England Journal of Medicine perspective, Tang and Lee (2009) argued that an “integrated PHR that is an extension of physicians' electronic health records (EHRs), will go further in facilitating the type of physician–
patient relationship that will improve health and health care, at a lower cost.” They estimated that millions of patients are using such integrated PHRs and provide the example that 50% of patients at the Palo Alto Medical Foundation clinic use their online portal (http://www.pafmonline.org ).
Detmer et al., (2008) consider the tethered PHR as a subset of integrated, interconnected or networked PHRs because the latter are populated with patient information from a variety of sources (e.g., EHRs, insurance claims, pharmacy data, home diagnostics) and allow patients to enter data into some portions of the PHR. A number of major US healthcare organizations have partnered with either Google or Microsoft to move toward this vision. For example, the Cleveland Clinic established a partnership with Google and Mayo Clinic has partnered with Microsoft HealthVault.
A number of large organizations including Walmart, and Intel are providing or planning to provide access to PHRs for their employees. Walmart and Intel are members of a consortium of companies that have joined together to form the non-profit organization Dossia (www.dossia.org). In collaboration with Children’s Hospital of Boston and using the platform Indivo (http://indivohealth.org/), Dossia offers an employer-sponsored electronic personally-controlled health record (PCHR) that pulls data from multiple sources and functions as a repository for ‘lifelong health information.’ Data in the Dossia application are controlled by the patient and the application is integrated into WebMD. After a pilot phase, the retail chain Walmart deployed the Dossia application to its nearly 2 million employees as part of the employee benefit selection process for 2009. (Kolbasuk McGee, 2008). Progress to date has not been reported, but it will be interesting to follow the employer-sponsored activities as they move forward.
Government and Foundation Initiatives
A number of governmental agencies (including the previously described Veterans Affairs) and other organizations have initiatives related specifically to PHRs.
The Obama administration has earmarked 19 billion US dollars for health information technology (HIT), including the adoption of electronic health records. Nationwide, adoption of HIT among physicians is slowly rising – from 10 percent in 2005 to 14 percent in 2007 (US Department of Health and Human Services, n.d.). Receiving federal funds is tied to “meaningful use of EMRs”. This phrase has been predominantly interpreted as referring to what constitutes meaningful use by providers.
However, Kibbe and Klepper (2009) suggest that patients need to be included in this discussion. These authors state that this money “could be re-imagined to take advantage of the new ways millions of consumers, patients, and care giving families are using information and communications technologies to solve problems, form online communities, and share information and knowledge.”
The Centers for Medicare and Medicaid Services (CMS) has been engaged in a number of pilot projects for PHR use among Medicare beneficiaries:
Medicare PHR Choice - for people with original Medicare living in Arizona and Utah.
MYPHRSC - for people with original Medicare living in South Carolina.
Medicare Advantage/Part D Drug Plan PHRs.
CMS has also launched a broad informational and educational campaign for their beneficiaries regarding PHRs.
In Project HealthDesign (www.projecthealthdesign.org ), a US-based initiative funded by the Robert Wood Johnson Foundation, design teams work collaboratively with lay people and their clinicians and family caregivers to create new types of PHR tools. A core technical platform facilitates technical tasks common to most PHRs, such as identity authentication and authorization or medication list management.
Lay people think of PHRs as tools to help them better understand health in everyday living by monitoring highly individualized cues that give insight into the person’s health state and response to clinician-directed therapies. Labeled by the teams as
“observations in daily living”, these cues include sensations and behaviors like mood, appetite, ability to walk a certain distance without pain, sexual satisfaction, and numbers of nights of un-interrupted sleep. The premise of Project HealthDesign is that PHRs may lead to better health and health care when they are designed to help people monitor health in everyday living, understand patterns that indicate improvement or disruption in progress towards health goals, and integrate these observations into clinical care conversations.
Connecting for Health, a public-private collaboration, has facilitated three phases of work related to PHRs and personal health technologies
(http://www.connectingforhealth.org/workinggroups/personalhealthwg.html). In Phase one, The Personal Health Working Group identified consumer requirements, concerns, and values that must be addressed as PHR technology is refined and implemented.
Products included: a baseline framework of the best available evidence regarding expected benefits of PHR as well as consumer and patient requirements. They also promoted the development and/or identification of data standards relevant to the PHR.
Phase two focused on coordination between EHR and PHR.
The focus of the Phase 3 work of Connecting for Health is enabled through a Personal Health Technology Council that identifies and recommends solutions for policy challenges affecting the adoption of PHRs and related technologies with a sharp focus on the needs and concerns of consumers.
Nursing Education Initiatives Related to Informatics and PHIMS
Beyond the accomplishments of individual institutions in educational initiatives related to PHIMS, there are several important events that have occurred in the United States to prepare nurses to practice in technology rich environments. The first is the recent release of the TIGER Phase II Collaborative Report. This report highlights the work of the nine collaboratives and how each one has used the intellectual and social capital of the various nursing professional organizations to move TIGER’s agenda of preparing the next generation of nurses (www.tigersummit.com/).
Second, the National League for Nursing has been promoting their position statement,
“Preparing the Next Generation of Nurses to Practice in a Technology-rich Environment: An Informatics Agenda.” Following up on the recommendations in this position statement, the NLN has a Task Group developing a Faculty Development Toolkit for Integrating Informatics into the curriculum. The Task Group is committed to continue its campaign to raise the awareness about the integration of informatics into the nursing curriculum and to provide necessary resources for faculty.
(www.nln.org/aboutnln/PositionStatements/index.htm).
Third, the American Association of Colleges of Nursing has released its Essentials for Baccalaureate Education and has included an essential on information management.
They also have informatics competencies as part of the Doctorate of Nursing Practice Essentials. The competency documents are available at:
www.aacn.nche.edu/Education/bacessn.htm and www.aacn.nche.edu/DNP/pdf/Essentials.pdf
Lastly the Quality and Safety Education for Nurses (QSEN) Project focuses on the integration of five core competencies in pre-licensure programs. These five core competencies include informatics. Fifteen pilot schools have been implementing this curriculum and their work is available on the QSEN site: http://qsen.org
Key Nursing Issues Related to the Design and Use of PHIMS
Despite significant effort toward the design and use of PHIMS, several gaps exist. In terms of design, the consumer or patient voice has yet to be valued and captured in a meaningful way rather it has been recorded through someone else’s lens, or has been distilled to available words from a dropdown menu. Shared access to this narrative within a PHR may foster a richer dialogue between patient and provider, creating the opportunity for more thoughtful and congruent treatment approaches. Second, there has been little integration of decision support strategies into existing PHRs. Third, there is a need for PHR designs suitable for individuals with low levels of functional literacy and computer literacy.
Other design-related issues relate to the dearth of research regarding use of social network approaches as personal health information management strategies or integration of patients’ mental models or conceptions of phenomena such as wellness or healthy aging.
In terms of use of PHIMS, most nurses in clinical practice are unaware of PHIMS such as PHRs and have not directly integrated them into their nursing practice. These tools provide nurses a key opportunity to be consumer and patient advocates and educators in new ways. However, to take advantage of this opportunity, nurses must build upon their existing advocacy and education competencies. Nurse researchers also require new types of competencies to integrate PHIMS as intervention strategies and to mine PHIMS for research purposes. PHRs, in particular, are suitable for meeting some types information needs related to patient data or a particular institution (e.g., What is my laboratory test result? Who is my nurse case manager? What hours is the clinic open?).
However, their use also results in additional information needs regarding the healthcare domain (What does this radiology finding mean?) Informatics strategies are needed to integrate answers to such questions as part of PHIMS in a manner that meets patients’
needs.
Agenda for Action
An agenda for action should include items related to design and use of PHIMS.
Design:
Explore the potential for patient participation within a PHR in the form of a narrative.
Build tools which capture patient conception and context within the PHR that are useful to all stakeholders: consumer/patient, provider and payer.
Explore social network technologies as PHIMS
Implement PHIMS technologies suitable for use by those with low functional, health, and computer literacy
Integrate informatics strategies to answer patient-specific, institution-specific, and domain-specific information needs
Build tools to manage, represent and mine the myriad of incoming data
Use:
Educate consumers, patients, clinicians, educators, researchers, and policy makers regarding use of PHIMS and data generated from PHIMS
Use PHIMS information to create care (including interventions) that is concordant with patient conceptual and contextual data.
Advocate for funding to support use of PHIMS
References
Deloitte, LLP. (2009).Survey of Health Care Consumers. Retrieved from http://www.deloitte.com/dtt/article/0,1002,sid=80772%26cid=252396,00.html
Detmer, D., Bloomrosen, M., Raymond, B., & Tang, P. (2008). Integrated personal health records: Transformative tools for consumer-centric care. BMC Medical Informatics and Decision Making, 8, 45.
Grant, R. W., Wald, J. S., Poon, E. G., Schnipper, J. L., Gandhi, T. K., Volk, L., Middleton, B. (2006). Design and implementation of a web-based patient portal linked to an ambulatory care electronic health record: patient gateway for diabetes collaborative care.Diabetes Technology & Therapeutics, 8(5), 576-586.
Kibbe, D & Klepper, B. (2009, May 21). Bringing patients into the health IT conversation about “meaningful use”. The Health Care Blog. Message posted to http://tinyurl.com/o56ykw.
Kolbasuk McGee, M. (2008, October 1) Wal-Mart Rolls Out E-Health Records To All Employees. InformationWeek. Retrieved from http://www.informationweek.com/
news/ software/ database/showArticle.jhtml?articleID=210605059
Seidman, J. (2009, May 20). PHR Evolution. The Health Care Blog. Message posted to http://www.thehealthcareblog.com/the_health_care_blog/2009/05/i-participated-in- a-personal-health-record-phr-workshop-yesterday-hosted-by-the-center-for-democracy-technology-cdt-cdt.html
Tang, P. C., Lee, T. H. (2009) Your doctor’s office of the Internet? Two paths to personal health records.New England Journal of Medicine, 360, 1276-1278.
US Department of Health and Human Services (n.d.).Health Information Technology, Vision for Health IT. Retrieved from http://tinyurl.com/q3xmxh.