1. Introduction to Health Informatics:
Health Informatics in Low- and Middle-Income Countries
Short Course for Health Information System Professionals
Introduction to Health Informatics:
Health Informatics for Behavior Change Communication
Welcome to Health Management Information Systems, Consumer Health Informatics.
This lecture provides a definitions of health communication, e-Health, consumer health informatics, and interactive health communication, identifies how the Internet has impacted consumer health informatics, explains how current and emerging technologies may affect consumer health informatics, and introduces the role of genomics in consumer health informatics.

2. Health Informatics for Behavior Change Communication
Learning Objectives
Explain how current and emerging technologies have impacted and may continue to affect consumer health informatics
Describe the role of genomics in consumer health informatics
The objectives for this lecture—Consumer Health Informatics, Lecture A—are as follows:
Explain how current and emerging technologies have impacted and may continue to affect consumer health informatics
Describe the role of genomics in consumer health informatics

3. Health Communication
“The art and technique of informing, influencing, and motivating individual, institutional, and public audiences about important health issues. The scope of health communication includes disease prevention, health promotion, health care policy, and the business of health care as well as enhancement of the quality of life and health of individuals within the community.”
—S. C. Ratzan, 1994
A broad cultural shift toward using technology and the Internet as a normal part of everyday life is emerging. Government policy is placing great emphasis on both health information technology and personal health management for consumers. The integration of communication media means electronic access to health information with Web-enabled telephones, handheld devices, and other emerging technologies. Interactive health communication enables consumers to gather information, make health care decisions, communicate with health care providers, manage chronic disease, and engage in other health-related activities.
HHS (2000) (as cited in Ratzan, 1994) defines health communication as “The art and technique of informing, influencing, and motivating individual, institutional, and public audiences about important health issues. The scope of health communication includes disease prevention, health promotion, health care policy, and the business of health care as well as enhancement of the quality of life and health of individuals within the community” (pp ). When taking informatics into consideration, consumer health informatics is interactive health communication where the focus is on consumers. Furthermore, HHS (2000) (as cited in Robinson, et al, 1998) states interactive health communication as “The interaction of an individual with an electronic device or communication technology to access or transmit health information or to receive guidance on a health-related issue” (pp ).
Since the publication of the report, interactive health communication continues to evolve and impact consumer health informatics. For example, Healthy People 2020 was launched in December 2010 and includes as one of its topic areas health communication and health information technology as part of the health promotion initiative.

4. Consumer Informatics Consumer Health Informatics
Manages data and information
Supports consumers
Uses computers and computer technologies
Consumer health informatics
Addresses the needs of the consumer
AHIMA (2012) defines consumer informatics as “The field of information science concerned with the management of data and information used to support consumers by consumers (the general public) through the application of computers and computer technologies” and consumer health informatics as “The branch of health informatics that addresses the needs of the consumer” (pp ).
When the applications of informatics technologies focus on patients or healthy individuals as the primary users, this is considered to be consumer health informatics.

5. Interactive Health Communication
Technology
Internet
Web services
Wireless technology
Tools
In a previous slide, interactive health communications was defined. Let’s review this definition again. HHS (2000) (as cited in Robinson, et al, 1998) defines interactive health communication as “The interaction of an individual with an electronic device or communication technology to access or transmit health information or to receive guidance on a health-related issue” (pp ).
An example of interactive health communications is e-Health. According to the Office of Disease Prevention and Health Promotion (ODPHP, 2012), “e-Health is the use of digital information and communication technologies to improve people’s health and health care. The increasing use of technologies, especially the Internet and mobile devices, to manage health highlights the potential of e-Health tools to improve population health” (para. 1).
Technology used in this process includes the Internet, web services, and wireless technology. AHIMA (2012) defines these terms as follows:
“Internet: An international network of computer servers that provides individual users with communications channels and access to software and information repositories worldwide” (p. 190).
“Web services: An open, standardized way of integrating disparate, web browser-based and other applications” (p. 359).
“Wireless technology: A type of technology that uses wireless networks and wireless devices to access and transmit data in real time” (p. 360).
Tools will be discussed on the next slide.

6. Interactive Health Communication
Tools
Online communities and support groups
Online health information
Online health self-management tools
Online communication with healthcare providers
Online access to personal health records
The tools include online communities and support groups, online health information, online health self-management tools, online communication with health care providers, and online access to personal health records (ODPHP, para. 2). These tools could be considered social media. Kaplan and Haenlein (2010) define social media as “a group of Internet-based applications that build on the ideological and technological foundations of Web 2.0, which allows the creation and exchange of user-generated content” (p. 59).
Today many healthcare organizations use the social media as a channel for information delivery. The Internet has become a way to gain access to health information, contact health care professionals, and receive health care services at a distance.

7. Impact on Consumer Health Informatics
New roles and approaches to health management
Partnership:
Consumers and healthcare providers
New expectations
Access to information when needed
While the concept of an interaction of an individual with an electronic device or communication technology may have a variety of descriptors, the impact on consumer health informatics remains the same. First, it has created a new role for the consumer, where the consumer is a key player in managing his or her own health, in partnership with healthcare providers. Second, it has set up expectations that health information is available when it is needed. With the growth and development of the Internet combined with the increase in the use of the Internet to search for health related information, consumers are drawn to use convenient and anonymous technologies for health purposes (Gibbons et al., 2009).

8. Impact of the Internet Increase in informed consumers
Availability of online personal health records
New forms of communication
Provide as much information as possible and provide options and empower the patient to make the final decision
Accessibility of healthcare products for purchasing
According to HHS (2006), “Significantly, there are indicators that Internet access is growing in every segment of the population and that many of these segments are ready to think about new uses of the Internet and other digital technologies for health” (p. XV).
Just how has the Internet affected consumer health informatics? Some examples are:
There is increased use of the Internet to find out information about healthcare providers and treatment options. Opportunities to select information based on their personal interests and preferences.
Personal health records that are independent of any healthcare organization, such as Microsoft HealthVault, allow patients to maintain their health information.
Secure exchange is possible between consumers and healthcare providers.
Increased marketing sophistication results in accessibility of healthcare products for purchase.

9. Impact of Emerging Technologies
Convergence of media and emergence of the Internet results in a networked communication infrastructure
Facilitation of access to health information and health-related support services
Expansion of communication choices for health professionals, patients, and consumers
HHS (2000) made several points regarding how advances in consumer health informatics are changing the delivery of health information and services—in particular, the following: “The convergence of media and emergence of the Internet create a nearly ubiquitous networked communication infrastructure. This infrastructure facilitates access to an increasing array of health information and health-related support services and extends the reach of health communication efforts. Delivery channels such as the Internet expand the choices available for health professionals to reach patients and consumers and for patients and consumers to interact with health professionals and with each other (for example, in online support groups)” (pp. 1-14).
Emerging technologies that are influencing consumer health informatics include those that come under the umbrella term “social media.”

10. Social Media Social networks Blogs Forums Wikis Photos and videos
Podcasts
Crowdsourced medical treatment and diagnosis recommendations
As explained previously, Kaplan and Haenlein (2010) define social media as “a group of Internet-based applications that build on the ideological and technological foundations of Web 2.0, which allows the creation and exchange of user-generated content” (p. 59).
While not originally created with healthcare in mind, today these media are seen as valuable healthcare tools. They are used in the healthcare environment for a variety of purposes including, for example, the use of a social network such as PatientsLikeMe, where individuals connect with others who have a specific disorder. Some media are used by healthcare providers to provide information to their patients. For example, Mayo Clinic uses both blogs and podcasts to discuss diseases, conditions, and treatments.
Health care organizations may use social media to assist patients in making informed choices and to build or maintain reputation in the marketplace. Photo videos such as those found on YouTube are popular. Mayo Clinic has a “Mayo Clinic Channel” where multiple YouTube videos are available for viewing.
The legitimacy of social media has increased as well. Respected health care organizations such as Mayo Clinic and governmental agencies such as the Centers for Disease Control and Prevention have established social media centers. For example, CDC (2011) “uses social media to provide users with access to credible, science-based health information when, where, and how you want it” (para.1).
Recently several websites that connect patients to multiple providers have begun offering services, for example CrowdMed.com. These sites charge a fee for multiple providers to review a patient’s chart and offer suggestions for diagnosis or treatment.

11. Potential e-Health Value Propositions
Stakeholder: Consumers (e.g., patients, informal caregivers, and information intermediaries)
Benefits sought from consumer e-Health:
Private, 24/7 access to resources
Expanded choice and autonomy
New forms of social support
Possibility of better health
More efficient record management
Lower-cost healthcare services
Avoidance of duplication of services
HHS (2006) identified a number of types of stakeholders in the e‑Health market and examples of reasons they are interested in consumer e-Health. Three—consumers, clinicians, and health care organizations—are examined in this lecture.
The first stakeholder is the consumer. The benefits sought from consumer e-Health include “private, 24/7 access to resources, expanded choice and autonomy, new forms of social support, possibility of better health, more efficient record management, lower-cost healthcare services, and avoidance of duplication of services” (HHS, 2006, p. 69).

12. Potential e-Health Value Propositions
Stakeholder: Clinicians
Benefits sought from consumer e-Health:
Greater efficiency
Better communication
More adherent and satisfied patients
The second stakeholder group is clinicians. The benefits sought from consumer e-Health include “greater efficiency, better communication, and more adherent and satisfied patients” (HHS, 2006, p. 69).

13. Potential e-Health Value Propositions
Stakeholder: Healthcare organizations
Benefits sought from consumer e-Health:
More patient self-care and health management
Lower administrative costs
Improved quality and patient outcomes
The third stakeholder is the healthcare organization. The benefits sought from consumer e-Health include “more patient self-care and health management, lower administrative costs, and improved quality and patient outcomes” (HHS, 2006, p. 69).
HHS identified many other stakeholders that see the potential value of e-Health such as consumer advocacy and voluntary health organizations, community-based organizations, public health programs, among others.

14. Challenges Presented Concerns with privacy and security
Risk of liability
Lack of laws or legislation governing the boundaries
Lack of payment for engagement
Lack of frequent data updates
Resistance by healthcare providers
Having described the impacts of the Internet and its derived technologies on consumer health informatics, what challenges do these technologies and media present? They include privacy and security concerns, liability risk, lack of law or legislation governing the boundaries, lack of payment for engagement, lack of frequent updates, and resistance by healthcare providers.
While the Health Insurance Portability and Accountability Act, or HIPAA, contains privacy and security requirements, it does not contain guidelines regarding the transmission of personal health information over the Internet. However, Subtitle D of the Health Information Technology for Economic and Clinical Health Act (HITECH Act), enacted as part of the American Recovery and Reinvestment Act of 2009, addressed the privacy and security concerns associated with the electronic transmission of health information.
Other challenges include the risk of liability, especially with relation to what constitutes medical advice which goes hand-in-hand with the lack of law or legislation governing designated boundaries for these emerging electronic device or communication technology tools.
Health care providers are sometimes reluctant to use interactive health communication in their practices, due to the lack of payment for their time and effort. For example, according to HRSA (2003), “The absence of consistent, comprehensive reimbursement policies is often cited as one of the most serious obstacles to total integration of telemedicine into healthcare practice” (p. 2).
Not all Web site data may be updated in a timely manner to reflect advances in clinical care. Web sites need to be reviewed and revised regularly or consumers can receive out-of-date information. Finally, health care providers may be reluctant to get on-board with some of these technologies due to wariness regarding their usefulness. There is also concern over the potential replacement of some person-to-person interactions, and a danger of losing essential benefits of the doctor/patient relationship, which include appreciation of a patient’s needs and personal preferences.
To conclude this unit, the role of genomics in consumer health informatics will be explored.

15. Role of Genomics Supply a piece of the personal health record
Family history
A risk factor for many chronic diseases of public health significance
According to CDC (2010), “By studying the relationship between genes, environment, and behaviors, researchers and practitioners can learn why some people get sick, while others do not. Family health history information can also help to identify people who may have a higher risk for certain diseases. Better understanding of genetic and family history information can help researchers and practitioners identify, develop, and evaluate screening and other interventions that can improve health and prevent disease. Individuals can contribute to their health by keeping records of their family health information and sharing this information with their doctor and with other family members” (para. 2).
Family history as a piece of the personal health record plays a role in consumer health informatics. HHS (2012) (as cited in Valdez, et al, 2010) stresses, “Family health history has the potential to improve health by finding people who are at risk for disease in the future or who are already sick but have not been diagnosed” (para. 12).

16. Role of Genomics
Another role of genomics in consumer health informatics is the connection to personalized medicine. This image of a prescription form with the DNA double helix illustrates how having genomic information connected to patient data enables clinicians to find the information they need to better diagnose and treat people. Physicians have the ability to “personalize” medical care, by identifying the predisposition of a person to have a disease, and developing therapies adapted to genetic features of patients.
Genomics was seen as an important issue by HHS. Launched in December 2010, Healthy People 2020 names genomics as one of the new topic areas. According to HHS (2012), “The new Genomics topic area and objectives for 2020 reflect the increasing scientific evidence supporting the health benefits of using genetic tests and family health history to guide clinical and public health interventions” (para. 2).
With the development and use of genetic tests, healthcare providers are using the information about each person's DNA to personalize medical care. Protection of this DNA information is needed or there is the possibility it could be used to discriminate against people. In order to protect people from discrimination by health insurers and employers on the basis of DNA information, the Genetic Information Nondiscrimination Act of 2008 (GINA) became federal law in According to the National Human Genome Research Institute (NHGRI) (2010), “Genetic discrimination occurs if people are treated unfairly because of differences in their DNA that increase their chances of getting a certain disease” (para. 1).
Source: Ades, J. (2009, May 1). Prescription form with DNA double helix. [image on the Internet]. Retrieved from 16

17. Health Informatics for Behavior Change Communication
Summary
Definitions
Impact of the Internet on consumer health informatics
Effect of current and emerging technologies on consumer health informatics
Role of genomics in consumer health informatics
This concludes Lecture A of Consumer Health Informatics. This lecture provided definitions of health communication, e-Health, consumer health informatics, and interactive health communication; provided a definition of consumer health informatics; identified how the Internet has impacted consumer health informatics; explained how current and emerging technologies may affect consumer health informatics; and introduced the role of genomics in consumer health informatics. Some challenges of the Internet and its derived technologies on consumer health informatics were also presented. These included concerns about privacy and security, risk of liability, lack of law or legislation governing the boundaries, lack of payment for engagement, and resistance by healthcare providers.

18. Health Informatics for Behavior Change Communication
References
American Health Information Management Association. (2012). Pocket glossary for health information management and technology (3rd ed.). Chicago, IL: American Health Information Management Association.
Centers for Disease Control and Prevention. (2010). Genomics and health resources. Retrieved from
Centers for Disease Control and Prevention. (2011, May). CDC social media tools. Retrieved from
Gibbons, M.C., Wilson, R.F., Samal, L, Lehmann, C.U., Dickersin, K., Lehmann, H.P., Aboumatar, H., Finkelstein, J., Shelton. E., Sharma, R., & Bass, E. B. (2009). Impact of consumer health informatics applications. Evidence Report/Technology Assessment No (Prepared by Johns Hopkins University Evidence-based Practice Center under contract No. HHSA I). AHRQ Publication No. 09(10)-E019. Rockville, MD: Agency for Healthcare Research and Quality. Retrieved from
Health Resources and Services Administration. (2003, October). Telemedicine reimbursement report. (Prepared by the Center for Telemedicine Law under contract No.02-HAB-A215304). Retrieved from
Kaplan, A. M., & Haenlein, M. (2010). Users of the world unite! The challenges and opportunities of social media. Business Horizons 53(1),
National Human Genome Research Institute. (2010). Genetic information nondiscrimination act of Retrieved from
Office of Disease Prevention and Health Promotion. (2012). e-Health. Retrieved from
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19. Health Informatics for Behavior Change Communication
References
Ratzan, S.C. (Ed.). (1994). Health communication, challenges for the 21st century. Special issue. American Behavioral Scientist, 38(2),
Robinson, T. N., Patrick, K., Eng, T. R., & Gustafson, D, for the Science Panel on Interactive Communication and Health. (1998). An evidence-based approach to interactive health communication: A challenge to medicine in the Information Age. Journal of the American Medical Association, 280(14),
Valdez R., Yoon, P.W., Qureshi, N., Green, R. F., & Khoury, M. J. (2010). Family history in public health practice: A genomic tool for disease prevention and health promotion. Annual Review of Public Health, 31,
U.S. Department of Health and Human Services. (2000). Healthy people 2010: Objectives for improving health. Washington, DC: U.S. Government Printing Office. Retrieved from
U.S. Department of Health and Human Services. (2006). Expanding the reach and impact of consumer e-Health tools. Washington, DC: U.S. Department of Health and Human Services. Retrieved from
U.S. Department of Health and Human Services. (2012). Genomics. Retrieved from
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20. This material was developed by Duke University, funded by the Department of Health and Human Services, Office of the National Coordinator for Health Information Technology under Award Number IU24OC This material was updated by Normandale Community College, funded under Award Number 90WT0003.
This presentation was produced with the support of the United States Agency for International Development (USAID) under the terms of MEASURE Evaluation cooperative agreement AID-OAA-L MEASURE Evaluation is implemented by the Carolina Population Center, University of North Carolina at Chapel Hill in partnership with ICF International; John Snow, Inc.; Management Sciences for Health; Palladium; and Tulane University. Views expressed are not necessarily those of USAID or the United States government.
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