Consumer Health IT Applications

Background |  AHRQ-Funded Projects |  Selected Consumer Health IT Resources

Background

As patients become more responsible for managing an increasing volume of health information, including their medical history, lab results, and medications, new consumer health information technology (health IT) applications are being developed that allow patients to manage, share, and control their health  information electronically and to assume a more active role in the management of their health. 

While the term "consumer health IT applications" is not yet well-defined, in general, it refers to a wide range of hardware, software, and Web-based applications that allows patients to participate in their own health care via electronic means.  The American Medical Informatics Association (AMIA) has developed a working definition for the field of consumer health informatics stating that it is "a subspecialty of medical informatics which studies from a patient/consumer perspective the use of electronic information and communication to improve medical outcomes and the health care decision-making process." [1]  In addition, as defined by Eysenbach, the study of consumer health informatics includes analyzing consumers' information needs, studying and implementing methods of making information accessible to consumers, and modeling and integrating consumers' preferences into medical information systems. [2]

New consumer health IT applications are being developed to be used on a variety of different platforms, including via the Web, messaging systems, PDAs, and cell phones, [3] and their use can benefit both patients and providers. These applications have various purposes including assisting with self-management through reminders and educational prompts, delivering real-time data on a patient's health condition to both patients and providers, facilitating Web-based support groups, and compiling and storing personal health information in an easily accessible format. One example of the potential benefits of these kinds of applications is illustrated by the use of messaging capabilities available in certain consumer health IT applications that enable timely communication between patients and their providers. [4]  Moreover, consumer health IT applications that allow gathering and integrating data from various health care sources can serve as a comprehensive resource for patients and their providers.  In addition to convenience, consumer health IT applications also can be important in emergency situations to provide critical health information to medical staff. 

As described by Jimison et al., [3] consumer health IT applications differ to the degree with which they integrate information about the patient in the application itself and the degree to which they provide patient-specific recommendations back to the user. Some examples of the range of applications are listed below.

Self-Management Systems. This includes systems that are highly varied and include different combinations of functionality utilizing multiple platforms.  The most effective systems provide a timely response to information about the current or evolving status of the user.  Some of them allow for monitoringand transmission of information, such as blood pressure or blood glucose.  Depending on system design, feedback to a patient regarding his/her health status can be received from the system directly or from the provider who receives information from the system. 

Electronic Personal Health Records and Patient Portals.  Electronic personal health records (PHRs) are defined as "an electronic record of health-related information on an individual that conforms to nationally recognized interoperability standards and that can be drawn from multiple sources while being managed, shared, and controlled by the individual." [5]  An electronic PHR can exist as a stand-alone application that allows information to be exported to or imported from other sources or applications or as a "tethered" application that is linked to a specific health care organization's information system.  Tethered PHRs, also referred to as patient portals, typically allow patients to view, but not modify, data from the provider's electronic health record (EHR).  Relevant information that is often retained in a PHR include personal identifiers, contact information, health provider information, problem list, medication history, allergies, immunizations, lab and test results, and other relevant medical history. [6]  Some applications also allow patients to communicate electronically with their providers.

Peer Interaction Systems.  Peer interaction can take the form of stand-alone applications or can sometimes be a part of multicomponent applications.  These applications can increase the perceived peer support and improve personal and social outcomes. [7]  Through online forums, discussion groups, and other peer communication features, patients can interact electronically with others who have similar conditions.

[1] American Medical Informatics Association Consumer Health Informatics Working Group.  (Available at: http://www.amia.org/programs/working-groups/programs/consumer-health-informatics).
[2] Eysenbach G. Consumer health informatics. BMJ 2000; 320(7251):1713-6.
[3] Jimison H, Gorman P, Woods, et al. Barriers and Drivers of Health Information Technology Use for the Elderly, Chronically Ill, and Underserved. Evidence Report/Technology Assessment No. 175 (Prepared by the Oregon Evidence-based Practice Center under Contract No. 290-02-0024). AHRQ Publication No. 09-E004. Rockville, MD: Agency for Healthcare Research and Quality. November 2008.  Available at: http://www.ahrq.gov/clinic/tp/hitbartp.htm).
[4] Tang PC, Lansky D.  The missing link: bridging the patient-provider health information gap. Health Aff (Millwood) 2005 Sep-Oct;24(5): 1290-5. (Available at: http://content.healthaffairs.org/cgi/content/full/24/5/1290).
[5] The National Alliance for Health Information Technology. Defining Key Health Information Technology Terms (2008). 
[6] HL7 Electronic Health Records Workgroup.  PHR-System Functional Model, Release 1 DSTU, November 2007 (Available at: http://www.hl7.org/Special/committees/ehr/docs.cfm).
[7] Glasgow RE, Boles SM, McKay HG, et al. The D-Net diabetes self management program: long-term implementation, outcomes, and generalization results. Prev Med 2003;36(4):410-19.

AHRQ-Funded Projects

The Agency for Healthcare Research and Quality (AHRQ) has funded several projects that are evaluating the benefits of consumer health IT applications. Selected projects include:

  1. Central Kenai Peninsula Health Collaborative Technology: Assessed current technology resources and planned implementation of area-wide electronic communications and connectivity to electronic health records and a patient-support Web-based data system
  2. Trial of Decision Support to Improve Diabetes Outcomes: Evaluated the effects of a Web portal-based patient empowerment program and electronic medical record (EMR) system on quality of care, patient safety, and utilization for patients with diabetes and physicians in primary care practices.
  3. A Community Shared Clinical Abstract to Improve Care: Developed a plan for enhancing communication at care transitions through an implementation plan for a community- and patient-shared EMR abstract that is available at the point of care.
  4. Personal Health Records and Elder Medication Use Quality: Evaluating the ability of elderly patients to interact with a PHR and their resulting self-activation with respect to medication adherence, medication use quality, and medication management behaviors.
  5. An Interactive Preventive Health Record (IPHR) to Promote Patient-Centered Care: Assessing whether an interactive preventive health record (IPHR) linked to an EMR will increase recommended screening tests, immunizations, and counseling.
  6. Impact of a Wellness Portal on the Delivery of Patient-Centered Prospective Care: Developing and testing a Web-based, patient-centered wellness portal to allow patient access to the Preventive Services Reminder System either via home computers or doctor's office kiosks, through which patients receive support regarding wellness and reminders for scheduling visits and tracking performance.
  7. Patient-Centered Informatics System to Enhance Health Care in Rural Communities: Integrating the functions of an EHR, PHR and a communication vehicle facilitating e-visits in a rural setting to examine differences in patient activation, patient-provider communication, medication management, and utilization.
  8. Evidence-based Practice Center Reports:  AHRQ's Evidence-based Practice Centers (EPC) Program includes several institutions that serve as EPCs and review all relevant scientific literature on clinical, behavioral, and organization and financing topics to produce evidence reports and technology assessments. (For more information about the EPC Program, go to http://www.ahrq.gov/health-care-information/topics/topic-evidencebased-practice-centers-epc.html).  AHRQ has funded several literature reviews to understand the development in and current use of consumer health informatics applications including:
  9. Personal Health Information Management and Design of Consumer Health IT: The purpose of this project is to establish a foundation and propose an action agenda for the integration of patients' personal health information management practices into the design of consumer health IT.  The project has yielded the following products so far:
    • Background Report (PDF, 1.07 MB) that assesses and synthesizes existing research and evidence regarding patients' personal health information management practices and its linkage to effective development and use of patient-centered health IT;
    • Secondary Analysis of Data From the Medical Expenditure Panel Survey (PDF, 961 KB) which assesses the degree to which the household received various medical services in the past year are associated with the manner in which the household kept records of those medical services; and
    • A workshop entitled "Building Bridges: Consumer Needs and the Design of Health Information Technology."
    • Managing Personal Health Information: An Action Agenda (PDF, 828 KB) provides an action agenda for advancing understanding of consumers' health information management practices, and offers expert recommendations for advancing work in the field of consumer health IT. 
  10. Accelerating Change and Transformation in Organizations and Networks (ACTION) Projects: ACTION is a model of field-based research designed to promote innovation in health care delivery by accelerating the diffusion of research into practice. (For more information about this initiative, go to http://www.ahrq.gov/research/findings/factsheets/translating/action/index.html).  Three projects were funded to proposals to develop and test proof-of-concept projects that leverage innovative communication-focused technologies to improve access to care, service quality, or patient safety in ambulatory settings. The projects are described below:

Selected Consumer Health IT Resources

The following resources were selected from the published literature which describe best practices for the implementation and use of consumer health IT applications.

A Common Framework for Networked Personal Health Information
Source: Markle Foundation
Year: 2008
Summary: This framework proposes a set of practices that, when taken together, encourage appropriate handling of personal health information as it flows to and from personal health records (PHRs) and similar applications or supporting services.

Perspectives on the Future of Personal Health Records
Author: Gearon CJ
Source: California HealthCare Foundation
Year: 2007
Summary: This article describes some business cases for the adoption of personal health records from both a provider and patient perspective.

The Relationship among Economic Development, Health, and the Potential Roles of mHealth (PDF, 521 KB) .
Authors: Kahn JG, Yang J, Kahn JS
Source:  Rockefeller Foundation (Making the e-Health Connection)
Year: 2008
Summary: Examines the epidemiological shift in the burden of disease types, away from communicable diseases towards chronic diseases and disability. Provides insight into how mHealth technologies can facilitate the management of this transition.

Using Telehealth to Improve Quality and Safety: Findings from the AHRQ Health IT Portfolio (PDF, 183 KB) .
Authors: Dixon BE, Hook JM, McGowan JJ
Source:  AHRQ National Resource Center for Health IT
Year: 2008
Summary: Provides an overview of technical and organizational challenges faced by AHRQ grants when implementing telehealth systems, including remote monitoring and remote-ICU systems.

A randomized trial comparing telemedicine case management with usual care in older, ethnically diverse, medically underserved patients with diabetes mellitus: 5 year results of the IDEATel study
Authors: Shea S, Weinstock RS, Teresi JA, et al
Source: J Am Med Inform Assoc 2009 Jul-Aug;16(4):446-56.
Year: 2009
Summary: Telemedicine case management resulted in net improvements in HgbA1c, LDL-cholesterol and blood pressure levels over 5 years in medically underserved Medicare beneficiaries. Mortality was not different between the groups, although power was limited.

Telemedicine for the Medicare Population
Authors: Hersh WR, Hickam DH, Severance SM
Source: Agency for Healthcare Research and Quality
Year: 2006
Summary: The goal of this report was to assess the peer-reviewed literature for telemedicine services that substitute for face-to-face medical diagnosis and treatment that may apply to the Medicare population. We focused on three distinct areas: store-and-forward, home-based, and office/hospital-based services. We also sought to identify what progress had been made in expanding the evidence base since the publication of our initial report in 2001 (AHRQ Publication No. 01-E012).

Project HealthDesign: Rethinking the Power and Potential of Personal Health Records - Round One Final Report (PDF, 3.6 MB) .
Source: Project HealthDesign, Robert Wood Johnson Foundation
Year: 2009
Summary: This report summarizes the findings of the nine grantees funded through Round One of the Robert Wood Johnson Foundation - Project HealthDesign to explore the possibilities of the use of PHRs to address specific, but complex self-management tasks.

Barriers and Drivers of Health Information Technology Use for the Elderly, Chronically Ill, and Underserved (PDF, 2.5 MB) .
Authors:  Jimison H, Gorman P,  Woods S, et al.
Source: Oregon Evidence-based Practice Center, Portland, Oregon
Year: 2008
Summary: This report reviews existing evidence in the literature on the barriers and drivers to the use of interactive consumer health IT by specific populations, namely the elderly, those with chronic conditions or disabilities, and the underserved.

Personal Health Information Management and the Design of Consumer Health Information Technology: Background Report (PDF, 1.07 MB) .
Authors: Agarwal R, Khuntia J
Source: Insight Policy Research, Inc.
Year: 2009
Summary: The report synthesizes and summarizes the existing literature across the following topic areas: existing evidence on consumers' personal informationmanagement (PIM) and personal health information management needs and goals; practices used for PHIM and PIM; tools and technologies available to date, either commercially or in prototype form; and gaps in the literature regarding the understanding of PHIM. Additionally, the report identifies areas in which future research is necessary in order to drive the design of effective consumer health IT.

Personal Health Information Management and the Design of Consumer Health Information Technology: Secondary Analysis of Data from the Medical Expenditure Panel Survey (PDF, 961 KB) .
Authors: Schneider ST, Gustavson B, Li Tiandong
Source: Insight Policy Research, Inc.
Year: 2009
Summary: The report summarizes an analysis of data from the Household Component of the Medical Expenditure Panel Survey (MEPS-HC) relevant to personal health information management. The goals of the analysis are to identify the variables that affect the techniques that people use to manage their family's health information, and to study any patterns among those variables.

Information gap: can health insurer personal health records meet patients' and physicians' needs?
Authors: Grossman JM, Zayas-Caban T, Kemper N
Source: Health Aff (Millwood). 2009 Mar-Apr;28(2):377-89
Year: 2009
Summary: Personal health records (PHRs), centralized places for people to electronically store and organize their health information, can benefit both patients and doctors. This qualitative study of health insurers' PHRs for enrollees reveals potential benefits and challenges. Insurers' ability to put claims-based data into the PHR offers an advantage. However, consumers are concerned about sharing personal health information with insurers and about Internet security. Physicians question (1) the validity of claims data in making treatment decisions and (2) whether accessing these PHRs is worth the disruptions to their workflow. This paper offers possible solutions that may lead to more widespread adoption of insurer PHRs.

Considerations for the design of safe and effective consumer health IT applications in the home (PDF, 307 KB).
Authors: Zayas-Caban T, Dixon BE
Source: BMJ Quality & Safety. 2010 October;19(3):i61-i67
Year: 2010
Summary: This article examines human factors and ergonomics issues that arose during the design and implementation of five AHRQ-funded projects focused on home-based consumer health IT applications. In their review of the projects, the authors make recommendations on integrating human factors and ergonomics design and evaluation methods into the development and implementation of consumer health IT applications. 

Last Modified: November 2013