Enhancing the Consumer Health Experience

1. Enhancing the Consumer Health Experience J. Michael Fitzmaurice, Ph.D. Agency for Health Care Policy and Research April 27, 1999

2. Overview • Government has useful web sites • Quality criteria for site evaluation are available • HITI -- Science Panel Report -- Deering article

3. AHCPR Web Page • To get to a government agency’s web site: • www.[agencyinitials].gov • E.G., www.hhs.gov or www.ahcpr.gov • Health information • AHCPR.GOV • Consumer.gov/health.htm • scipich.org • healthfinder.gov

4. ahcpr.gov • Choosing Quality Health Care • Choosing and Using a Health Plan • Consumer Health • Consumer Assessment of Health Plan Survey--consumer surveys and reporting • National Guidelines Clearinghouse • guidelines.gov • CONQUEST--clinical perf. measures

5. hhs.gov • Data Council • Nat. Comm.on Vital and Health Statistics • Hearings: agenda, testimony, minutes • Reports • Public meeting schedules • HIPAA Administrative Simplification • P.L. 104-191 • Notices of Proposed Rules, and public comments • FAQs

6. consumer.gov • Aging/Elder Care • Buying Smart • Choosing Quality Health Care • Dieting and Weight Control • Diseases • Exercise and Fitness • Health insurance

7. scipich.org • Learn about evaluating and selecting interactive health communication (IHC) applications • Evaluation reporting template • Selected resource links • Scientific articles published by the Panel

8. healthfinder.gov • A gateway web site!! • Hot topics • AIDS, Cancer, Alternative medicine, Food safety, Diabetes, Medicare, Tobacco • News • Smart Choices • Prevention and self care, Online healthinfo • Choosing quality care, Fraud and complaints • Tools--build your own health web site

9. SciPICH Report • What are the potential risks and benefits of these emerging technologies? • Ensure high quality and effectivness, how? • What is the science or evidence base? • Role of health professionals and others? • Nationally, how do we improve health for all people using these technologies?

10. Capabilities Needed • Ability to assimilate patient outcome information in a meaningful way, about • Individual patients • Similar patients • Comparable treatments • Providers, Institutions, Health plans • Ability to present information in a meaningful way for medical and personal health decisions

11. Strategies • Privacy • Personal health information (PHI) is individually identifiable health information • PHI must be protected • The conditions under which PHI may be received, used, and disclosed must be understood • May take a Federal privacy law to achieve uniformity and national consensus

12. Strategies • The more uniform the conditions across geographical areas and uses, the more efficient information transfer will be. • Look for common and innovative security solutions for health • Commerce • Defense

13. Strategies • Promote health data standards development • Medical vocabulary, syntax, codes • Data set content to support common functions • Billing -- Patient record -- Images • Medical test ordering and results reporting • Emergency data

14. Strategies • Identify priority research areas where necessary information to support private sector investment is lacking • Telemedicine • Improved medical and cost efficiency • CPR • Uniform information for patient care, research, public health, public policy • CDSS--ADE • Reduced errors in medicine

15. Strategies • Bridge the gap between high-speed computation and advanced networking and health care uses. • Demonstrations, pilot studies • Evaluations • Population research • Disease-based simulations • Modeling State and community uses • Public Health reporting • Public program enrollment (1-stop shopping)

16. Strategies • Evaluation • Technical feasibility • Application in the community • Effect on well-being • Patient health outcome • Productivity at work • Enjoyment of life • Cost-benefit analyses

17. Future • Laporoscopic Surgery • Nintendo docs • Cannot train everyone to be an MD, need consumer research summaries • What information is most useful for: • Improving or maintaining health status • Caring for aging population • Educating care givers

18. Challenges • Privacy, confidentiality, security • Physician productivity • Obtaining comparable health data • Describing and measuring concepts • Common vocabulary • Collection, storage and retrieval

19. Challenges • Realizing the complexity of medicine • How much is art? • How can we increase the science? • Evidence-based medicine • It is hard to describe medical conditions, processes, and patient outcomes • Training and education in net health infomation use for • Physicians, Patients, Public

20. Challenges • Address errors in medicine • Recent literature: • Leape -- Bates -- Others • Adverse Drug Events • Chemotherapy overdoses • Allergic reactions • Amputation of wrong limb

21. Challenges • Measuring patient outcomes • Measures • Cost of collection • Interpersonal comparisons of satisfaction • Measuring quality • Clinical performance measures • Practice guideline variances • Treatment variation in the population

22. Future • How much PHI are we willing to give up to receive the benefits of • National and regional health data bases • Better purchasing information • Targeted consumer health information • Good health information, how will we know it is good? • Role of government?

23. Enhancing the Consumer Health Experience J. Michael Fitzmaurice, Ph.D. Agency for Health Care Policy and Research April 27, 1999