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CONSUMER HEALTH INFORMATICS Dr. Ali M. Hadianfard Faculty member of AJUMS

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Presentation on theme: "CONSUMER HEALTH INFORMATICS Dr. Ali M. Hadianfard Faculty member of AJUMS"— Presentation transcript:

1 CONSUMER HEALTH INFORMATICS Dr. Ali M. Hadianfard Faculty member of AJUMS

2 Further reading  Biomedical informatics computer applications in health care and biomedicine (3 rd edition), Edward H. Shortliffe, 2006 (chapter 14).  Consumer Health Informatics, Deborah Lewis, Gunther Eysenbach, Rita Kukafka, P. Zoë Stavri, Holly B. Jimison, 2005 (whole book, specially chapters 1,4,5,8,9,11,12).

3 Definitions Health information consumer as a person who seeks information about health promotion, disease prevention, treatment of specific conditions, and management of various health conditions and chronic illnesses. Consumer Health Informatics:  Is the use of modern computers and telecommunications to support consumers in obtaining information, analyzing their unique health care needs and helping them make decisions about their own health.  Is the branch of medical informatics that analyses consumers’ needs for information; studies and implements methods of making information accessible to consumers; and models and integrates consumers’ preferences into medical information systems.

4 Definitions - continue The CHI includes patient-focused informatics, health literacy and consumer education as well as Information Resources, Communications, Remote Monitoring, Videoconferencing, and Telepresence. The focus is on information structures and processes that empower consumers to manage their own health--for example health information literacy, consumer-friendly language, personal health records, and Internet-based strategies and resources. The shift in this view of informatics analyses consumers' needs for information; studies and implements methods for making information accessible to consumers; and models and integrates consumers' preferences into health information systems. Consumer informatics stands at the crossroads of other disciplines, such as nursing informatics, public health, health promotion, health education, library science, and communication science.

5 The areas of interest to consumer health informatics 1. Bringing medical knowledge to consumers 2. Making electronic health records accessible to patients 3. Building decision aides to support consumer’s choices 4. Developing quality control mechanisms for health information available over the Internet

6 Consumer action When patients (healthcare consumers) have a serious medical concern, they don’t just accept whatever treatment their local doctor offers. They’ll spend hours and hours on the Internet learning about their condition, communicating with other patients and clinicians who share their interests, and tracking down every lead they can find on the best new treatments.

7 Consumer action – 10 Level Dr. Ferguson has delineated 10 levels in which consumers participate in the access and use of health care Information  Level 1. e-Patients search for health information.  Level 2. e-Patients exchange e-mail with family members and friends.  Level 3. e-Patients seek guidance from online patient-helpers.  Level 4. e-Patients participate in online support groups (discussion groups, mailing lists).  Level 5. e-Patients join with other online self-helpers to research their shared concerns.  Level 6. e-Patients use online medical guidance systems.  Level 7. e-Patients interact with volunteer online health professionals via chat rooms.  Level 8. e-Patients use the paid services of online medical advisors and consultants.  Level 9. e-Patients engage in electronic conversations with their local clinicians.  Level 10. e-Patients receive one-way electronic messages from their clinicians.

8 Self-help Since 1980s: The importance of the patient as a full participant in health care. A shift from the patient as the silent recipient of ministrations from a wise, beneficent clinician to an active collaborator whose values, preferences, and lifestyle not only alter predisposition to certain illnesses but also shape the characteristics of desirable treatments. Patient participation takes many forms:  Shared decision-making by Evaluating and choosing therapeutic strategies from a set of acceptable alternatives  Self-care by Self-monitoring  Collaborative practices by Implementing the therapies and evaluating the effects.

9 The application of technology in consumer informatics Technology Application Information ResourcesWeb-based information resources, patient access to electronic medical records, direct access to health information MessagingE-mail, chat groups, consumer health networks, personal clinical electronic communications (PCEC) TelephoneScheduling, triage Remote monitoringRemote monitoring of pacemakers, diabetes, asthma, hypertension, CHF. Remote interpretationPACS, remote interpretation of radiographic studies and other images, such as dermatologic and retinal photographs. VideoconferencingWide range of applications, from low-bandwidth telehome care over telephone lines, to high-bandwidth telementoring and telepsychiatry TelepresenceRemote Surgery, telerobotics

10 Telepresence  Telepresence involves systems that allow clinicians to not only view remote situations, but also to act on them e.g., Telesurgery, nursing home and other long-term facilities, remote video rounds  Telepresence requires high bandwidth, low latency connections.  uses Real-time (live interactive or Synchronous) technology

11 Roles of Health Professionals in Consumer Health Informatics  1. professionals serve as sources for content e.g., Working in conjunction with software designers  2. professionals provide important guidance in moderating public electronic discussion groups and responding to patients’ electronic messages  3. clinicians become information brokers and interpreters for patients

12 The quality criteria of Consumer Health Information web sites Quality = totality of characteristics of a product or service that satisfy stated or implied needs of the user  Ethical Principles  HSWG quality criteria for health web sites  Silberg’s criteria, 1997  The American Health Information Management Association (AHIMA) also has published “Recommendations to Ensure Privacy and Quality of Personal Health Information on the Internet

13 Ethical principles A number of organizations have provided ethical codes or high-level ethical guidelines for provision of consumer health information on the Web:  HONcode: the Health on the Net Foundation, 1995 - The code originally consisted of eight broad principles for medical Webmasters  eHealth Code: by Internet Healthcare Coalition  HI-Ethics Code of Conduct: by a group of leading for-profit consumer health information Web sites  AMA: the American Medical Association  E-Europe Criteria: In 2002, the European Commission published a communication called “Quality Criteria for Health related Web sites”

14 Health Summit Working Group (HSWG)quality criteria for health web sites  The quality criteria were adopted by the Institute of Electrical and Electronics Engineers (IEEE) and the American Public Health Association (APHA)  Credibility: includes the source, currency, relevance/utility, and editorial review process for the information.  Content: must be accurate and complete, and an appropriate disclaimer provided.  Disclosure: includes informing the user of the purpose of the site, as well as any profiling or collection of information associated with using the site.  Links: evaluated according to selection, architecture, content, and back linkages.  Design: encompasses accessibility, logical organization (navigability), and internal search capability.  Interactivity: includes feedback mechanisms and means for exchange of information among users.  Caveats: clarification of whether site function is to market products and services or is a primary information content provider.

15 Silberg’s Criteria  Authorship: Authors and contributors, their affiliations, and relevant credentials should be provided.  Attribution: References and sources for all content should be listed clearly, and all relevant copyright information noted.  Disclosure: Web site “ownership” should be prominently and fully disclosed, as should any sponsorship, advertising, underwriting, commercial funding arrangements or support, or potential conflicts of interest. This includes arrangements in which links to other sites are posted as a result of financial considerations. Similar standards should hold in discussion forums.  Currency: Dates that content was posted and updated should be indicated.

16 Privacy Principles According to these principles, consumer-oriented commercial Web sites that collect personal identifying information from or about consumers online would be required to comply with the four widely accepted fair information principles which can be summarized as : “Notice” “Choice” “Access” “Security”

17 Notice Means that Web sites should provide clear and conspicuous notice of their information practices, including What information they collect, How they collect it(e.g., directly or through non-obvious means such as “cookies”), How they use it, How they provide choice, access, and security to consumers, whether they disclose the information collected to other entities, and whether other entities are collecting information through the site. This is typically done in a privacy statement that is easily accessible from the home page and from all points of data collection.

18 Choice Means that Web sites should offer consumers choices as to how their personal identifying information is used beyond the use for which the information was provided (e.g., to consummate a transaction). Typically this is implemented by opt-in checkboxes within the form used to gather personal information.

19 Access Means that Web sites should offer consumers reasonable access to the information a Web site has collected about them, including a reasonable opportunity to review information and to correct inaccuracies or delete information.

20 Security Means that Web sites should take reasonable steps to protect the security of the information they collect from consumers.

21 Protecting health information special regulations exist for exchanging and protecting health information. In the United States, the Privacy Rule of the Health Insurance Portability and Accountability Act of 1996 (HIPAA) creates a set of requirements and restrictions for he handling of so-called Protected Health Information (PHI) PHI refers to individually identifiable health information that is or has been electronically maintained or electronically transmitted by a covered entity, as well as such information when it takes any other form.

22 Accessibility “Access” to information is another major issue often discussed in the context of consumer health informatics. On a macro level (policy level) “access” mostly refers to physical access to the Web. On a meso and micro level, “accessibility” of information is also often quoted as a “quality criterion” for health Web sites.

23 Levels of accessibility barriers Level 1 - Physical accessibility: the Internet is accessible from home, or only from a library or school, in terms of convenience, privacy, filters, and costs. it is in the hands of health information providers to prevent false-positive blockings—by labeling their health Web site with an appropriate metadata vocabulary. Level 2 – Findability: This refers mainly to an appropriate listing in search engines and directories and cross-linking from relevant Web sites, so that users become aware of the Web site (external findability). However,it also refers to findability of a certain piece of information within a Web site (internal findability). use appropriate keywords on all Web pages, Keywords should match terms users would use and also include frequent misspelling Level 3 - Readability, comprehendability: font size, font, and colors Level 4 – Usability: is determined by the way the information is grouped and presented, by how the user navigates through the information, and by the amount of help the system gives, accessibility for special user groups such as seniors or disabled users

24 User’s guide: A CREDIBLE web site A health information web site is trustworthy when is CREDIBLE C urrent and frequently updated R eferences cited E xplicit purpose and intentions of the site D isclosure of sponsors I nterests declared and no conflicts of interests B alanced content, lists advantages and disadvantages L evel of E vidence indicated

25 Health Information Delivery Methods  Push: the user may initially join the system, but subsequently the user receives information without the need to request it further. E.g., mailing lists, pop-up notification systems. Information “pushed” to the user is assumed to be filtered so that it is of interest to the user and the user will wish to view most items.  Pull: where resources are available for users to search or browse and the user must take specific action (e.g., clicking a link) to retrieve an information resource. Information that is “pulled” comes from large data sets and only a small fraction of the data, which is identified by the user as of definite interest, is retrieved for viewing

26 Health information distribution systems There are several Ways to distribute health information:  File Repository: File Transfer Protocol (FTP); e.g., Doc, PDF(PDF file viewer Adobe Reader)  Electronic Mail: in the body of e-mail messages or as e-mail attachments  Mailing list: includes Announcement list or Newsletter (a one-way conduit of information), and Discussion list (any opt-in subscriber may post)  The World Wide Web: includes text and hyper text documents (Hypertext Markup Language, HTML)  Usenet: Newsgroups, It includes a world-wide network of bulletin board servers accessible through the Internet. The system contains many thousands of active discussion groups covering a wide variety of topics. Newsgroup servers use their own communications protocol and client software  Web-based discussion groups: e.g., Discussion Forums ; Weblogs or blogs are similar to Web-based discussion groups except that the primary postings are usually all written by the same person.

27 Using E-mail in patient care Prescription renewals Appointment requests Referrals to specialists Name, address, phone number, or insurance information changes Non-urgent medical issues Monitoring chronic conditions (e.g., diabetes, asthma, headaches) Monitoring effects of therapy Follow-up on behavioral interventions (e.g., smoking cessation, dietary changes)

28 Situations in which E-mail should not be used Medical emergencies or time-sensitive issues because of its asynchronous nature Issues requiring lengthy messages Issues requiring negotiation through long volleys of messages that become cumbersome Communicating bad news, which is best done in person Sensitive issues at risk of disclosure due to potentially weak security mechanisms When confronted with a patient who is unable to response electronically

29 Disability Informatics Disability informatics,a subfield of medical informatics, seeks to understand better how individuals with disabilities can use information technology and information systems to address any functional issues they encounter, improve their self-efficacy, and empower them to be as independent as any other persons. Disability informatics broadly defined can be any application that collects, manages, and distributes information related to disability to persons with disabilities, as well as to care providers and family and to healthcare and rehabilitation professionals.

30 Disability Informatics- continue A major area of disability informatics involves identifying and addressing the particular needs and requirements of the disabled population to utilize general information systems. The main resolution is then educating and raising awareness of these issues to information technology professionals and the information technology (IT) industry.

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