Consumer Health Informatics

1. Consumer Health Informatics Deborah Lewis, Ed.D, RN, MPH Associate Professor of Nursing University of Pittsburgh

2. Definitions…. Consumer health informatics 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. Eysenbach, 2000

3. Consumer health information (CHI) is information on health and medical topics provided in response to requests from the general public, including patients and their families. In addition to information on the symptoms, diagnosis and treatment of disease, CHI encompasses information on health promotion, preventive medicine, the determinants of health and accessing the health care system. Medical Library Association, 2000

4. Consumer Health Informatics is defined as the integration of consumer health information and information technology in an environment of shared healthcare decision-making that supports effective self-health action. Lewis and Friedman, 2000

5. Integrating Process Communication Strategies that include: Information Technology… In concert with Human Interventions Consumer Outputs Informed Consumer Achievement of Personal Health Goals Improved Health Outcomes Peaceful End-of-Life Decisions Inputs Family, Friends and Healthcare Providers Accurate Health Information Current Health Status Personal Beliefs and Values Personal Health Goals Prior Understanding Model for Consumer Health Informatics

6. What has caused recognition of the importance of Consumer Health Informatics • Changing values toward patient autonomy and self-care • Changing cost models • Withdrawal or change in previously-delivered service • New opportunities for access and connectivity Adapted from P. Brennan

7. The Possibilities • For the consumer: distributed systems make it possible for information delivery to transcend the hospital/clinic environment when the “teachable moment” most often occurs. New media will make access more affordable. • For the educator/clinician: The use of web-based technologies provide for easy upgrades of content and access to multiple information sources.

8. Technology can provide a vehicle for basic information and supportive interaction (Internet). • Technology-based Media can model non-linear processes. • Computers are available whenever the patient is available.(if the patient has access)

9. Characteristics of Today’s Healthcare Consumer

10. Today’sHealth Consumer • Busy with little free time • Well educated • Less intimidated by physicians • Want choices • Eager to take control or play a major role in their own health Adapted from Hospitals & Health Networks

11. Where Do People get Health Information? Family Physician

12. They want… • Comprehensible, relevant knowledge • Communication with peers and professionals • Personal health information management tools

13. Applications for Consumers • Medical Information • Drug Information • Storage of Personal Medical Records • E-Mail to Physicians • Body Mass Index Calculators • Health Risk Assessment

14. A 32-year old mother of two living in Wausau, recently diagnosed with Ovarian Cancer, locates and enrolls in a clinical trial lead by a University-affiliated oncologist in her community. A married couple, their three children, and the wife’s mother live on a 200 acre farm and get weekly updates on ground water quality and contamination from their state’s Health Alert Network. The Health Planning Council of a medium size town conducts a resource assessment and concludes that their community lacks services for disenfranchised people (unemployed, uninsured, transients, migrant workers, racial and ethnic minorities A single father of a 7 year old child learns from her pediatrician that the child has Crohn’s disease. The father reviewed his child’s records, including laboratory tests and physician notes over the web from his home computer, and was also able to look at health information from major research universities. A 72-year old woman works out a planwith her physician to modify her medication schedule so that on the days she plays bridge she takes her diuretic AFTER the game is over

15. The Contexts of Care • Living Environment • Homes • Communities • Social Environments • Families • Cultural Groups • Psychological Environments • Illness representations • Human Information Processing • Technological Environments

16. Where do people keep health information?

19. Computer-based Approaches to Patient Education

20. Knowledge Transfer improved knowledge in Children with Asthma improved knowledge in Elderly with Arthritis improved knowledge in Adults with Diabetes improved medication knowledge in Adult psychiatric patients Health Behaviors improved self-care behaviors in Adults with Arthritis improved adherence to medication therapy in Elderly Clinical Outcomes reduced fat intake and decreased HgbA1c in Adults with Diabetes decreased HgbA1c in Adults with Diabetes decreased hospital admissions in Adults with Asthma decreased plasma cholesterol in Adults with Hyperlipidemia

21. Relationships with Care Providers • Patients prefer live interaction for some types of communication Skill Development and Decision Support • Computer-based technologies are used effectively to transfer self-care management skills in diabetes.

22. Social Factors • Rural patients and patients from low socio-economic backgrounds respond well • Gender does not make a difference Personswith Disabilities • Virtual learning environments enhance interaction, diminish feelings of isolation and improve self-esteem

23. Literacy Considerations • Use of multimedia make programs more understandable by persons with limited reading ability. • One study found that patients who were less well-educated benefited most from an interactive video program.

24. Developmental Considerations • School age children responded positively and had improved health outcomes (n=6) • Elderly clients with little prior computer experience have improved knowledge scores and reported satisfaction with CBPE (n=4)

25. The Internet

26. Growth of the Internet • 17 million Americans use the Web to search for Health Information • Average age 41 • 53% are female • Average annual income 61K • 81% have a college degree http://www.cyberdialogue.com/pdfs/articles/intel.pdf

27. What has the Internet brought us? Convenience Increased Access to Resources New Media Possibilities Concerns about Information Quality “Information Overwhelmus”

28. Issues of Information Overload and Information Quality • Amount of Information is Overwhelming • Increased Quantity of Information may not be an increase in Quality • There is an ongoing need for new approaches to assist Consumers in locating Information that is Accurate, Understandable and Personally Meaningful

33. How will we reach those who need health information most? Aging population 18-25% who are poor and uninsured 9 million Americans who are functionally illiterate. (National Adult Literacy Survey, 1993) Those without access: The digital divide

35. Communication and Information resource for Family Caregivers (Parents) of Children with Cancer Caring Place

36. “Caring Place”, will provide individualized clinical information, patient-centered information resources, and access to online family-provider and family-to-family communication for family members of children with cancer

37. Health Almanac The Health Almanac module includes a framework for summarizing the child’s clinical record. Specific information for the “Caring Place” will include the chemotherapeutic protocol, lab values and radiology reports. Information resources (found in the Information Library) will assist the parents in understanding what their child’s health information means. A calendar function will also be available to allow parents to track appointments.

38. Gathering Place Online access to discussion groups within self-designated communication groups. They will be able to decide how they wish to participate. Each family communication group will have the opportunity to access their child’s participating healthcare providers or other family caregivers who are participating in the study. The discussion group participants will be able to post text-based messages and upload external files (for example, images, video, sound files, word processing documents, or spreadsheets)

39. Information Library The Information Library module is under development. It will contain specific information for pediatric oncology patients. These information resources will be patient-centered and will include traditional patient education materials currently being use in the oncology clinic at Children’s Hospital, Pittsburgh. The traditional information resources are primarily paper-based and have been developed by oncology clinic staff at Children’s Hospital of Pittsburgh. We will include those resources that apply directly to treatment, side-effects, clinical tests, and social support. Links will be provided to selected external web-based resources. Additional paper-based resources will remain available from the information shelves in the patient waiting areas of the Oncology Clinic.

40. Review of the Prototypes

41. Family Caregivers Internet Use n=40 • 83% access Internet from Home • 14% access Internet from Work • 72% find the information they are looking for “most of the time” or always • 97% have searched for information related to their child’s diagnosis • 64% searched for information regarding new medications • 64% searched for answers to unanswered questions after MD visits

42. 78% use search engines • 39% use e-mail to communicate with care providers • 72% have not participated in online support groups • 61% are concerned about the security of electronic health information • 63% question the quality of the information they find

43. Comments from Parents • The website should contain • Current valid and reliable information resources • Easy to search • Information regarding clinical trials • Access to e-mail with healthcare providers • “The Internet is my only way of fighting this disease”

44. Usability Testing • 17 parents • Average age 42 • Time since diagnosis 1 wk – 4.5 yrs average 1.25 years • 16 have computers • 15 have Internet access • Use ranged from never (n=2) to daily (n=8) The one person who had no computer used the Internet often at the public library and carried all the information with her.

45. User testing comments • Need a disclaimer about outside sites • Need a place to ask questions • Need drug information • Information needs to be tailored to your child • Need to be able to organize all the information they give you • Need chat rooms for kids and teens“Not everyone is rationale at first, the Internet may not be the best choice for information seeking”

47. Personal Experience: First Questions • What does this diagnosis mean? • How will this change her life? • Will her normal development change? • Will she still be able to go to school? • More information about the drug? • What was the name of that drug? • How will I get help when I go home?

48. First Internet Encounter http://www.epilepsyfoundation.org/answerplace/Life/children/

49. What I’ve learned • The Internet can cause great stress • It is not always easy to find the Information you are seeking • The .gov sites don’t often appear in searches • The Healthcare team is the best resource for individualized information but they are not always available • Rationale thought leaves you when your child is diagnosed with a serious illness • There is much work to do in the area of Consumer Health Informatics • We need to leverage these new technologies in ways that will meet consumer and healthcare providers needs

50. Top Consumer Health Information Web Sites • AMA Health Insight: On-Line Health Information for Everyone http://www.ama.org • Centers for Disease Control and Prevention (CDC) http://www.cdc.gov • Healthfinder TMhttp://www.healthfinder.gov • National Cancer Institutehttp://www.cancer.gov/cancerinfo