Consumer Health Informatics Tamim Alganam

Consumer Informatics Consumer Health Informatics Management of data and information Supports consumers Use of computers and computer technologies 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. 79-80). When the applications of informatics technologies focus on patients or healthy individuals as the primary users, this is considered to be consumer health informatics.

Interactive Health Communication Tools Online communities and support groups Online health information Online health self-management tool Online communication with health care 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 health care 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.

Impact on Consumer Health Informatics New roles and approaches to health management Partnership: Consumers and health care 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 health care 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).

Impact of the Internet Increase in informed consumers Availability of online PHRs New forms of communication Accessibility of health care 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 health care providers and treatment options. Opportunities to select information based on their personal interests and preferences. The sponsoring organization provides consumers with tools to develop and maintain their own PHRs. E-mail exchange is possible between consumers and health care providers. Increased marketing sophistication results in accessibility of health care products for purchase.

Social Media Social networks Blogs Forums Wikis Photo video Podcasts 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 health care in mind, today these media are seen as valuable health care tools. They are used in the health care 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 health care 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).

Potential e-Health Value Propositions Stakeholder: Consumers (e.g., patients, informal caregivers, 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 health care 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).

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 comprised of the clinicians. The benefits sought from consumer e-Health include “greater efficiency, better communication, and more adherent and satisfied patients” (HHS, 2006, p. 69).

Potential e-Health Value Propositions Stakeholder: Health care 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 health care 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.

Personal Health Record (PHR) Electronic record of health-related information on an individual Conforms to nationally recognized interoperability standards Drawn from multiple sources Managed, shared, and controlled by the individual This lecture begins with a definition of the personal health record. The National Alliance for Health Information Technology’s report, Defining Key Health Information Technology Terms, defines a PHR 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” (NAHIT, 2008, p. 19). While similar to the electronic health record, a key difference is the last bullet, that is, the record is managed, shared, and controlled by the individual. The control includes who can see or use the information in the PHR. In addition, the EHR could, through health information exchange, be a longitudinal health record, a PHR has the potential to be a much more comprehensive lifelong record as the next few slides will illustrate.

Contents of a PHR Personal identification Emergency contact information Physician, dentist, and specialists contact information Health insurance information Given that key differences exist, the content of the PHR will have some similar pieces, but also have different components than a patient’s legal medical record. According to the American Health Information Management (AHIMA), a PHR should include: “Personal identification, including name and birth date People to contact in case of emergency Names, addresses, and phone numbers of health care providers, e.g., primary care physician, dentist, and specialists Health insurance information Living wills, advance directives, or medical power of attorney” (AHIMA, 2012, glossary P)

Contents of a PHR Organ donor authorization Significant illnesses/surgical procedures and associated dates Current medications and dosages Immunizations and their dates Allergies/sensitivities to drugs or materials Family history PHR content should also include: “Organ donor authorization A list and dates of significant illnesses and surgical procedures Current medications and dosages Immunizations and their dates Allergies or sensitivities to drugs or materials, such as latex Important events, dates, and hereditary conditions in your family history” (AHIMA, 2012, glossary P)

Contents of a PHR Recent physical examination results Opinions of specialists Important test results Eye Dental Provider correspondence Health related educational materials Other health related information The final portions of a PHR identified by AHIMA are: “Results from a recent physical examination Opinions of specialists Important test results, such as eye and dental records Correspondence with provider or providers Current educational materials (or appropriate web links) relating to health issues Any other information such as exercise regimen, any herbal medications taken and any counseling received.” (AHIMA, 2012, glossary P)

Role of PHRs Help consumers make informed health care decisions Engage consumers in their care Supply information to health care providers Integrate the delivery of health care and place the consumers at the center of their care The personal health record has several main roles. They are to: Help consumers make informed health care decisions. PHR content is drawn from multiple sources, not just from a single health care provider. Having a PHR helps individuals better-manage their health and health care services and make informed health care decisions. Engage consumers in their care. Creating a PHR is not an easy process. Consumers who have gathered health and wellness information and created a PHR are likely to be involved in the health care process, be more engaged in the decisions they face, and have improved communications with their providers. A PHR is a tool to assist them in managing the information that is paramount to self-care and self-management. Supply information to health care providers. PHRs are a communication tool, and may contain information that would aid the provider when determining the best treatment. A PHR can help bridge an information gap between what a single health care provider may know, and the total picture. For example, a patient new to a physician practice provides access to her PHR, which contains information about recent health services and conditions. Having this data helps to avoid an order for tests already performed, saving both time and money. Integrate the delivery of health care and place the consumers at the center of their care. PHRs can support the shift from episode-based care, to a more holistic view; where, instead of health-records centered around the provider, there are patient-centered records.

Consumer Health Informatics References – Lecture a American Health Information Management Association. (2012). Pocket glossary for health information management and technology (3rd ed.). Chicago, IL: Author. Centers for Disease Control and Prevention. (2010). Genomics and Health. Retrieved from http://www.cdc.gov/genomics/public/index.htm Centers for Disease Control and Prevention. (2011, May). CDC Social Media Tools. Retrieved from http://www.cdc.gov/SocialMedia/Tools/ 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, October). Impact of consumer health informatics applications. Evidence Report/Technology Assessment No. 188. (Prepared by Johns Hopkins University Evidence-based Practice Center under contract No. HHSA 290-2007-10061-I). AHRQ Publication No. 09(10)-E019. Rockville, MD. Agency for Healthcare Research and Quality. Retrieved from http://www.ncbi.nlm.nih.gov/books/NBK32638/pdf/TOC.pdf Health Resources and Services Administration (HRSA). (2003, October). Telemedicine reimbursement report. (Prepared by the Center for Telemedicine Law under contract No.02-HAB-A215304). Retrieved from http://www.hrsa.gov/ruralhealth/about/telehealth/reimburse.pdf Kaplan, A. M. & Haenlein, M. (2010). Users of the world unite! The challenges and opportunities of social media. Business Horizons 53(1), 59-68. National Human Genome Research Institute. (2010). Genetic information nondiscrimination act of 2008. Retrieved from http://www.genome.gov/10002328 Office of Disease Prevention and Health Promotion (ODPHP). (2012). e-Health. Retrieved from http://www.health.gov/communication/ehealth/Default.asp

Consumer Health Informatics References – Lecture a Ratzan, S.C. (Ed.). (1994). Health communication, challenges for the 21st century. Special issue. American Behavioral Scientist 38(2), 202-207. Robinson, T.N.; Patrick, K.; Eng, T.R.; & Gustafson, D, for the Science Panel on Interactive Communication and Health. (1998, October). An evidence-based approach to interactive health communication: A challenge to medicine in the Information Age. Journal of the American Medical Association, 280(14),1264-1269. Valdez R., Yoon, P.W., Qureshi, N., Green, R. F., & Khoury, M. J. (2010, April). Family history in public health practice: A genomic tool for disease prevention and health promotion. Annual Review of Public Health 31, 69-87. U.S. Department of Health and Human Services. (2000). Healthy people 2010: Objectives for improving health. Retrieved from http://www.healthypeople.gov/2010/Document/tableofcontents.htm#volume1 U.S. Department of Health and Human Services. (2006, June). Expanding the reach and impact of consumer e-Health tools. Retrieved from http://www.health.gov/communication/ehealth/ehealthtools/pdf/ehealthreport.pdf U.S. Department of Health and Human Services. (2012). Genomics. Retrieved from http://www.healthypeople.gov/2020/topicsobjectives2020/overview.aspx?topicid=15 Image Slide 16: Ades, J. (2009, May 1). Prescription form with DNA double helix. [image on the Internet]. Retrieved from http://www.genome.gov/pressDisplay.cfm?photoID=20158 This material Comp6_Unit8a 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 IU24OC000024.